UPDATE: WelshStar has now left St Andrew's, but she is still blogging for us. Here's her story.
Note: Blog entries appear most recent first.
19 November 2020
Her journey and recovery story is one that inspires, and promotes hope to everyone who may be going through something similar. Today, Sarah wants to introduce herself as the person behind the written words of Welsh Star.
Sarah talks about her experiences and breaks the stigma on mental health conditions.
So, instead of reading a blog from Welsh Star, today watch a video from Sarah.
10 September 2020
“I cannot believe another 6 weeks or so have passed, every day used to drag during my time in services but now it just seems to fly by (I definitely think that Netflix & Prime have a contributory factor!!).
Well, I really hope that you are all well and are adjusting to the ever changing “new normal”. Throughout this pandemic I have continually worried and therefore, campaigned about what we are facing will be having a HUGE impact on one’s mental health and this, sort of, next chapter is really no different. I know the views of many is that it should be getting easier for people as many of the restrictions are relaxing but please do not underestimate the challenges we may still face.
Firstly, I believe that anxiety levels for many will be sky high now the expectation is to return to work and send children back to school, as well as health anxiety being at its peak for so many sufferers now that we are being encouraged to gain some normality for ourselves and our families lives.
This may continue to be a very scary time for people, and it is so important to not judge or discriminate against this just because we may have different views and therefore, not experience their continuing distress. For those who are struggling then please know that you are not alone, and I cannot stress enough how important it is for you to confide in someone so that you have an outlet for your pain and suffering.
With all types of mental health problems (in my experience and what I have witnessed with others) then I have not once discovered a time when talking has not helped in some way, no one should have to struggle alone.
For those who may suspect that a friend or relative or colleague may be finding things difficult then please try to reach out to them… I cannot stress enough that it is ok to talk about mental health.
So, a bit about what I have been up to - I went home to Wales for just over a week and had a very tiring, albeit lovely time. My niece and nephew kept me really busy as well as celebrating my Mum’s birthday. I also enjoyed my 1st ever glass of prosecco with a close friend of mine of 35 years. It was also our 1st proper catch up since 2008 when I went into services, so it was much needed and felt extremely good. I am quite fortunate to still have two close childhood friends, plus have also just reconnected to a really good friend of mine before I went into services so that feels really nice.
Being away in services for so long and doing things that I am really not proud of have definitely impacted on my friendships, but mostly from my side due to the shame I have felt rather than people turning their back on me. I think my way of coping was to shut everyone out and detach myself, and therefore not having to experience the pain or loss of coming into services.
Friendships are very important and I may only have a handful but I can be completely myself with all of them and know that I never have and never will be judged by them for my past or what may happen in the future. Thank you guys, you know who you are!
Whilst I was in Wales I met my Psychiatrist and had my 1st review meeting since being discharged from hospital. Immediately the difference I felt in confidence, ownership and independence on anticipation and attendance of the meeting compared to when I was in hospital was huge.
If you read my early blog entries then you will know that even my monthly ward rounds conjured so much anxiety for me however, there was no negative emotion whatsoever this time. I owned my last 6 months with confidence and pride whilst given the respect that I have often felt missing my in-house psychiatrists in the past.
I was definitely there as an equal and did not feel inferior one bit, I would describe it as an empowering experience and I do not think that words can actually capture how good that feels after so many years of pain and distress at these types of meetings.
I hope that shows to those who may be in a similar position to how I have been to not give up and one day you will get to experience this feeling of equality and autonomy with your team also.
Take care for now…”
26 July 2020
“Firstly, apologies for being away for so long!! I am certainly discovering that life in the ‘real’ world certainly moves far quicker than when you are in services and although I have not done anything significant, I feel like I have been pretty busy. I have been getting out a little more, discovering new bus routes and meeting up with friends which has been really nice considering how isolating it felt at the beginning of lockdown. I’m getting used to wearing my mask on public transport and in shops, I do find it more difficult when it is hot (and especially with my glasses steaming up!) but it has quickly became part of routine. I did have a really busy week with moving downstairs to a bigger flat, so I am now in a one bedroom rather than a studio and if feels amazing to have the extra space. I also now have the view of the park across the road and I get the morning sunshine coming in which is lovely. I have also started a new ‘healthy eating’ regime which I am enjoying whilst is also going well, since the 1st July I have lost a stone, so I am really pleased.
This weekend I have been doing some pebble painting for a little project I am doing for a friends garden and this week I’ve got this string art project I am going to give a go ready to give as a gift for my Mum’s birthday next month. I’m planning on going home for the week of her birthday so that is something I am looking forward to plus whilst I am in Wales I might be having my first face to face appointment with my Psychiatrist as due to covid-19 we have been doing telephone appointments. I know they are really pleased at how well I am adjusting to normal life and being pretty independent, but it will be nice to meet him and talk about the future. I was hoping to get a car when I went home but there is a delay with me getting a replacement driving license due to a change in my details since before I was in services and then with offices being shut so to print the documents I need. Hopefully, it will be something I will be able to sort out fairly soon however, with most places trying to resume normal business. It will be really good for me to be driving again, fortunately my mental health diagnosis or medication doesn’t affect my ability to drive and it had always been something that I had enjoyed plus will add to my independence.
There have also been some delays in me getting back into employment which I have tried to look at just being another set of challenges I have to overcome rather than getting bogged down emotionally by it all. I have got a lot of support in this area and am fortunate to have people who genuinely have my back. I will of course keep you updated on this. So, this evening I am planning on having something nice (yet healthy!) to eat then relaxing on the sofa with a movie. I am still reducing my sleeping medication and am now on the lowest dose, it is a bit hit or miss (and did not sleep well last night) but I definitely feel like I am getting there. Well, I hope you are all keeping safe and well and I will not leave it as long to write next time…”
27 May 2020
“As we come to the end of another month, how are you all feeling? I guess life continues to be tough for a number of reasons right now, and I just want you to know that you are all in my thoughts. So far this lockdown has been a complete rollercoaster for me, and I am doing my best to let go of judgements and expectations; this is not always easy! I just want you to know that however you are feeling right now, it is okay.
Someone special to me taught me that it is okay to “just be”, and that goes for everything that you are experiencing. As soon as you place judgements or try to analyse what is going on inside your body or mind, then I find that is when things feel messy and complicated. So, if this is a new concept to you, then today try to “just be” for a few moments at a time. If you find it is something that works for you then you can try it for longer to discover what you feel comfortable with.
In regards to what I have been up to, unsurprisingly not a lot. I have days when I feel really productive to the point I can become frustrated due to the lack options available, but then other days my sleep is all over the place so I nap a lot and then become frustrated that I have not been productive enough. It can be a catch-22 situation and what I keep trying to remind myself is that there is no right or wrong at the moment, so to again ease those expectations on myself. I have been able to enjoy some of the sunshine and had a socially distanced picnic last week which was really lovely, but I miss hugs! I have bought a new fan as I have discovered that my flat gets really hot and I have also managed to keep a plant alive for basically 2 months now which is pretty exceptional in my history of plant-keeping! I have done less diamond art and cross stitch which I am going to try to get back into today, but have done some serious Netflix binging that easily passes the hours by.
I did have a meeting regarding work and the ball is officially moving. Of course, Covid is causing some delays as well as the general process of setting up a new role, but it is definitely exciting. This next chapter of my life is so important to me for a number of reasons, and especially so in terms of my values and identity. I am going to be working in an area that I totally believe in where I can actually make changes that are needed for the benefit of others. I cannot think of a better reason to get up and go to work everyday, plus it has been a long time since I earned my own money which is also really important to who I am.
Before I go, I just want to share a little poem I wrote last week that I recorded to feature on the No Really, I’m Fine podcast all about kindness for Mental Health Awareness week… I will also try to share the link for the podcast episode which is approximately 13 minutes long, and I am on at the end.
There are only 6 letters, just 2 little words,but a powerful motion that worldwide should be heard, bringing people together, looking after each other’s minds, if you do one thing today then please just “be kind"...
It is just so important to help your friends out, listen to their feelings and support their mental health, reach out to your family and where safe, strangers too, as you just never know whether they are in need of you...
Make someone smile and virtual hugs all the way, the tiniest of acts could brighten their day, true acts of kindness are without judgement or greed but with an open heart to all those who need...
Even on yourself, sometimes it takes its toll so try to look after your mind, body & soul, if we all come together at these difficult times to spread mental health awareness and just “be kind"...
And until next time, keep safe.”
6 May 2020
“If you are like me then you have completely lost track of what day it is... I’ve checked and today its ‘Wednesday', meaning we have now been in lockdown for 45 days. I’m wondering how everyone is feeling?! Like my past entries have mentioned, for me there has been good days but I have also had some bad days.
I imagine that is the same for many of you, so please don’t think that you are alone. I have struggled with everything from routine to obsessing over the news, sleeping patterns to feeling drained of discussing/hearing about covid-19. I feel that my experiences have been all part of the process of being thrown into a pandemic within days of embarking on what should have been my new-found freedom. So far, there have been various things that I have struggled with, and right now I’m at the point of fretting slightly that I haven’t used my lockdown time wisely. I have heard so many inspirational stories of what people have been up to or projects some have ventured into and I can’t say I have really done much. Yes, I have done a lot of looking after myself which I know is hugely important. I have also adjusted into a life outside of services, I have kept in contact with family and friends, dabbled into being a bit creative and I guess also completed my online college course, but then I also feel that I have done a lot of daytime napping, TV binging and ‘avoiding' to some extent. Maybe I am being slightly harsh on myself and as we both know, I am my worst critic but I feel like I ‘should’ have experimented with some cooking/baking, made an effort with exercise and done a bit more writing... Aren’t ‘should have’s' so frustrating!! I would love to know what you guys have been up to!
There has been some progress with my future employment, which I am really excited about. There have been delays due to coronavirus, but there have also been lots of emails/telephone conversations regarding the posts so the ball is definitely moving. I say ‘posts’ as I will be doing a combination of roles in separate areas of the organisation. I think they will give me a good balance, and I am really excited in meeting with my future managers in coming weeks. I will of course keep you updated as I move through the process.
Well I know that this is not the longest of my posts although as with us all, what I am up to is pretty limited. For now, take care and please keep safe.”
21 April, 2020
“Well I hope that you are all managing to keep well and safe as we continue to live in very strange times. I’ve had a pretty good week considering. I’m still not in a great routine with sleep - from not sleeping at all for a whole night to maybe sleeping in until the afternoon on other days - but I am doing alright and I am trying to not put too much pressure on myself right now to get it right. Instead, I have just been going with the flow and as I am only responsible for myself, there are not currently any expectations on me, and I needn’t put too many expectations on myself either.
Another thing I have introduced is a walk everyday around the park that my flat opens onto, I had only been going out for shopping really and incorporating a walk with that, but already I feel better. It gives me a little bit of routine, it gives a focus, some much needed Vitamin D, a bit of distraction and feels like I am doing something (although very tiny) to help with my weight. I am someone who is overweight and have had problems with it for a number of years. It does secretly get me down but find it really hard to get into the mindset to heavily exercise or to super diet. I enjoy my food and especially right now, it is the first time in so many years that I am getting to pick my own meals, cook my own meals, eat when I want to eat and really enjoy food. It’s a tough balance and I just think it is something that I am going to continue battling for the foreseeable.
I have also been doing some creative stuff, from cross stitch to diamond art which I am really enjoying, and of course the usual Netflix binge from the new extremely bizarre big cat original to Louis Theroux’s documentary series. I continue to keep in touch with loved ones and I know a number of other people have discovered ‘House Party’, with the children in my family loving it. I have also had discussions with my future employer over the telephone and will continue to have conversations (and contact via email) until we are at a point of restrictions lessening with view of me embarking on my new career. This is something that I am really excited about; part of my role is going to be within a new team and the development of it to reach its full potential.
Last week I had an article published with the Guardian newspaper which I am really proud of. I talk about what it is like going from a decade in services to now being under lockdown due to COVID-19. I also talk about my concerns for those who have mental health problems and the rise in demand I believe we will see in mental health services due to the emotional and psychological effects of this pandemic, and how an already struggling sector will cope.
So, as you can see, in all I am doing well, and I sincerely hope that you guys are doing ok too. I want to reach out and connect with as many people as possible, so all feedback is welcomed. If you have any questions or have a subject that you may like me to cover then please send them our way and I will do my very best to answer/respond. Please try to keep well and safe, lovely people.”
14 April, 2020
“I’m aware that I have been away for a couple of weeks and just hope that you are all managing to keep safe. I had intended on having a little break as thought that everyone has got more than enough to deal with and keep up with at the moment, and I didn’t want to be ‘another’ thing - however, I have been away slightly longer due to quite a bit of avoiding/procrastinating.
What we are all facing at the moment has never been experienced before and therefore, I am literally just taking things day by day and that goes for my thoughts and emotions, too. I have especially had a rubbish couple of days, and you are kind of the first people I am sharing this with. To everyone else, my friends and family, I’m just continuing to do my own thing under the restrictions, but I have been feeling a little low, lonely and I guess, missing physical contact. The reason I want to put that out there is because I imagine a lot of people are feeling exactly the same and are not wanting to worry or burden family/friends and to some extent, if like me, are feeling a bit silly for feeling this way. It is tough for everyone, and especially for those who have a vulnerability with their mental health. I just want you to know that you are not alone.
Another of the aspects I am also struggling with is that I think it is massively important to stay connected with family and friends, as I mentioned in my last entry, but I am also exasperated by talking all things Covid-19. Due to everyone now having such a restricted/limited lives there is very little else to talk about. It is tough to get the balance right of sharing important information and getting bogged down by it all, therefore I am especially finding the repetitive conversations difficult. I did tackle this well on Friday night by having a “virtual date night” with my girlfriend and we didn’t discuss anything to do with the current pandemic, the effects, or how it is making us feel - instead we just got back to being “us”. I would certainly recommend regular conversations like this in order to help your mental health. I continue to limit my exposure to the news updates and just do a round-up after the daily government briefing, I also do all I can to avoid negativity on social media. I have been getting into various TV series including some binging on Netflix and have been relaxing with some crosstitch and diamond art. I’ve also sat in the garden over this very hot Bank Holiday weekend so got some much needed vitamin D. I admit, I need to take my own advice and spend a bit more time getting some fresh air in the garden or going for a brief daily walk. I also know that some sort of routine always helps me, and I have not been very good in establishing that with napping in the days, late nights etc but it is something I’m going to keep working at. I would recommend you do too, although we should mutually agree that we will not give ourselves a hard time if we do not achieve it perfectly as we are in very unusual and difficult time.
Until I next write, I hope you all keep safe physically and mentally.”
March 22, 2020
“Social-distancing... Self-isolating... COVID-19... These are terms that we will all be very familiar with as we as a country (and worldwide) are trying to find our feet in this crisis. It is ok to feel unnerved, scared and panicked, but I do believe that we WILL come through this as long as we all follow the advice that we are being given on a daily basis. It is quite simple, if it is not essential, then don’t do it. This will help with reducing the speed and spread of this virus. We all need to come together - not physically, but mentally and in spirit - for us to get through this pandemic. The NHS, the country and world need you to follow all advice given. I do not underestimate what this means for individuals; as humans we are social beings and not being able to socialise is understandably going to put strain on people and have an effect on our mental state. There are things you can do, though: we may not be able to meet up in person, but phone calls, video calls, messages, emails and social media are things we can rely on.
Many of my readers already have a vulnerability to poor mental health, and deepening into depression or heightened anxiety is something that could easily happen. That is why connecting to the world in the ways I have mentioned is essential for you to not feel alone. For me, I moved into my new flat on Wednesday at last (whoop whoop!), and going from living with a number of other patients and staff for the last decade, I have been pretty much alone for the last 5 days and it is strange. I also know that if I don’t stay connected to friends, loved ones and my social media community then this is going to have a HUGE impact on my mental health.
There are other things that I have also found work for me. At first I felt quite overwhelmed by all the continuing news updates and it made me anxious. I have therefore put it into my routine that I only check the news briefly every morning, and then listen to the update and advice from the government at the end of each day. Of course, if it ‘urgent’ news then I am not going to ignore it, but I find that a lot of the information is being repeated by different media channels and it can be difficult to follow and process. If you are finding it difficult to understand it all then please know that you are not alone, these are complicated times in terms of understanding facts and figures, so don’t put yourself under pressure to understand it all.
I also feel that it is important to get fresh air and experience sunlight. You are still able to go for walks as long as you can maintain the two metre distance from others. If you are in a rural area or close to parks then this should be easy and something I would advise you to do regularly. If you are not, then just some fresh air in your garden or on the doorstep will definitely give you a little boost with the large amount of time we are all now spending indoors.
I feel I have to mention the panic-buying that is going on in supermarkets etc. Come on, this needs to stop... we are all in this together and if we cannot come together now as a nation then when can we? Please think of those who are less able to bulk up; the elderly, the vulnerable, the key workers and all the NHS workers that are working so effortlessly to protect all those who are sick and poorly. I feel immensely proud of our NHS right now and what we stand for. That is why I want to share this final piece of information with you before I sign off… #clapforourcarers "
March 15, 2020
“Following my last entry and my recent ‘highs’, I’m not sure if it was inevitable but I’ve had a few low days. I think it is the combination of a few things. Of course there is always a ‘come-down’ from good news, especially so when you get the lull of waiting periods, but we cannot ignore the impact that the coronavirus or COVID-19 is having on everyone. It kind of hit me on Thursday but for me in a more embarrassing way than I’d like to admit however, I think it is important for me to share it with you too.
So, my original feelings towards what is happening all over the country was about how it was going to affect me and more so the frustration that it might ‘inconvenience’ me in some way: in my move, in seeing loved ones, sorting out my work & doing the things that I am really excited about doing with finally getting out of hospitals. I then felt guilty about feeling this way, my thought process was that people are getting poorly and even dying and I’m worried about the basics of shopping expeditions, going out for lunch with my girlfriend and seeing family/friends. I felt incredibly selfish and on Thursday it kind of knocked me.
I do think it knocked me so much because of my deep-rooted links with guilt and shame but then how I interpret that is ‘I’m a bad person’. Fortunately, I have an understanding support network around me who gave reassurance and actually validated my feelings, and that is why I thought it was important to share this with you as it is likely that many of you will also be feeling the same way but it is important to not beat yourself up.
Over the weekend my feelings have changed slightly, I wouldn’t say that I have gone into ‘panic mode’ but my anxiety has definitely heightened as to considering the real effects that this is going to have on us all as a country. I guess a big worry of mine is the effect that self-isolation is going to have on people and their mental health.
I have an elderly nan who lives alone and as much as she would probably enjoy a break with some peace and quiet with a short period of isolation, long term the effects of loneliness can be huge.
Through being in prison and high secure services, I have had periods of complete isolation and trust me it is tough on your mental state. I understand that that was complete restriction, but loneliness comes in many forms and I worry about anyone who may have to isolate on their own. I am about to move into my own flat and am very excited about my freedom/own space, but I have considered on whether, if we came to it, is it wise to stay in my flat alone or to travel home and be with family.
I think many of you will be experiencing these types of questions and I would suggest you talk them through with loved ones. If you are having mental health support, then talk to your team as everywhere is providing contingency plans for how you can still access support, therapy etc. Some people may not have people they can turn to in person but if you are using social media (and I recommend you use it in the right way rather than fueling anxiety), then there is a lot of support out there and I have seen an outpouring of people coming together this way.
I will continue to blog and will definitely let you know how my move goes on Wednesday, in the meantime, I cannot stress the importance of washing your hands.
Take care, look after yourself and if your know of someone who may be struggling or just that they may be lonely then please, please, please give them a call.”
11 March, 2020
“It has been a HUGE couple of days for me!! I had my 117 discharge meeting yesterday and got a date for moving then had a telephone chat/meeting today to discuss a future job opportunity. So, on Wednesday 18th March, I will be taking the big step of moving out of secure services and into my own flat. Then once settled in, I will arrange a face to face meeting to discuss getting back into work and exactly how that will look. I am very excited and feel ready for this next chapter of my life.
I also went home to Wales last weekend and had a really lovely time. We went out for a family meal and caught up with other family members and friends at different points which was really nice. I also spent a bit of time up in my mum’s attic which triggered some emotion as I have a whole load of stuff up there from the 11/12 years in services. I made a start but there is a lot to sort out so I'm going to take it little by little. My family have been supportive in donating any spare items they have that I can use in my new flat and my nan gave me some money to get bedding etc and the essentials I need to give the place a good clean before settling in. I hope they all know just how grateful I am to them.
I’m going to keep this short as am tired so going to get an early night but really wanted to share my good news with you.”
01 March, 2020
“Hapus Dydd Gwyl Dewi… (Happy St David’s Day) and for those who have been following me from the beginning will know that the its is the 1st year anniversary for the Welsh Star blog today!!
What a year… I feel like we have been on a real journey so I thought that u would try to capture it in this entry. So, my idea for the blog came well before March 2019 and at first the idea faced a lot of resistance. Mainly from my Multidisciplinary Team (MDT) but also others across the charity and mainly because this has never been done before. Therefore, I of course faced initial challenges but as you will all know by now, I am an extremely determined person and I was determined to get this off the ground. I had meetings with my team and the communications team, there were many discussions surrounding exactly how the blog would look, what it would include and obviously a big thing was confidentiality. I was fortunate however, that even though I face opposition, and actually had far more supporters. The idea for breaking down barriers, challenging stigma and discrimination was massively important for me and many others. It was these people who also supported me at the beginning, whilst I was at St Andrew's and even now as I still blog and am still very much on my mental health journey!! You are probably all laughing that I have now used the word ‘journey’ twice in this short piece of writing because, yes I hate clichés, but a journey is very much what it has been.
So, St David’s Day last year, the Welsh Star blog went live and this last year has been incredible for me. There have been so many ‘highs’ but a whole load of tough times too and I just hope that throughout the it all, I have stayed true to my readers to give an honest and transparent view into what it is like living with mental illness and living in psychiatric secure services. I have of course along the way had to omit some experiences or information due to confidentiality that my MDT insisted on protecting myself but also living with others who have been incredibly vulnerable and poorly. However, even with this confidentiality, I really do hope that I have given you real insight into what life has been like for me because mental illness really can happen to anyone.
My year has involved upsetting ward rounds to rewarding work placements, distressing exposure therapy to stronger family connections, challenging ward dynamics to finding love. There have been opportunities and support from the National Service User Awards and now a Twitter family, to moving into a Rehab unit and visits home, arranging events and developing skills, being brave and holding people accountable, coming off section and making real choices, expanding my voice and growing in passion every single day. I am so proud of all I have achieved, and I am so happy that I have got to be able to share it all with you. I do not, and never have taken lightly the fortunate platform I have in reaching out to you guys. Some of you know me and some of you don’t. Some have mental health problems, while some are helping people with mental health problems (and even both). I thank you all for your support, for your feedback and kind words and for sharing this last year with me. I fully intend to continue blogging and have some very exciting transitions happening just around the corner for me that really is going to feel like the next chapter. I will continue to share the good and the bad, the highs and the lows because that is what life is like, especially so when living with a mental illness.
I would especially like to thank Bobbie Kelly and Jo Lehmann from the Communications Team who promote and share my blog at every level and support me personally. To Nicola Lintott, Hayley Lucas and Annjanet Mckerral who had my back from the very beginning, supported me in the conversations to get the blog off the ground and continue to have my best interests at heart. To my family and friends who have probably found out a lot more about me through this blog and have taken it all in your stride and love me just the same. To my girlfriend who has never judged and has just understood me for who I am from the very beginning – you make my life a happier place.
25 February, 2020
“I have been full up with a head cold, but nothing was going to stop me from having the best weekend ever as I shared it with my beautiful girlfriend. This was our first weekend away together and yes; I am a bit of a romantic! I decorated the hotel room with rose petals, heart balloons, bubbly, a single rose, chocolates and so much more. It looked amazing and she loved it; she has never been treated with such love throughout her life and I have never wanted to treat someone like that, so it was just perfect. We are so in love and are really happy together. We got matching heart tattoos on the Friday then went to an amazing Mexican restaurant in the evening to just celebrate ‘us’. I can definitely go as far as saying that it was my best weekend in my 36 years of life, because of her, because of us but also because of how mentally well I am. I have so much exciting stuff to look forward to in my love life, my personal life and my work life… It genuinely feels like my life is just beginning!”
19 February, 2020
“I was asked a little while ago if I could try and explain the difficulties I experience in the ward round process, and why that might be. So I am going to try…
I think a big reason is the similarity to experiences I had as a child. During my teenage years when I was ‘off the rails’, I was known to Social Services, and would have to attend child protection meetings and case conferences. These meetings would be held in a big room with a large table in the middle. The table would be surrounded by all sorts of professionals; from social workers to teachers, family to foster carers and then there would be ‘me’. They would all talk and make decisions about me, rarely asking what I wanted or what I thought was best for me and their decisions would be final - therefore, being a child, I would have to do whatever they wanted.
Now fast forward to adulthood and looking at the ward round process, there are huge similarities. Another big room, often a large table and many professionals all sitting around discussing and making decisions about me. Although I am no longer a child, there is still a power indifference and the team’s decisions are final and you have to do (or not do) whatever they say. Feeling not listened to and unheard is extremely invalidating, and especially so for those with Borderline Personality Disorder (BPD). So, as you can see, just preparing and going into ward round is a triggering process. I immediately feel inferior, my vulnerabilities are heightened, and crying is inevitable.
Over the years, I have had lots of different experiences, I have been listened to and understood at times, but I have also had lots of distressing ward rounds where I have felt intimidated, ignored and ‘put down’. Of course, if you are making requests that are not met then you are going to be disappointed, but that in itself goes a lot deeper for me. I automatically internalise that I cannot be doing as well as I had thought and therefore, I must be failing in some way meaning ‘I am a failure’. These triggers run deep inside me and are not easy to just dismiss, and this is when my emotion often gets the better of me. This has also been a challenge and due to the responses of some team members, I feel a huge pressure to control my emotions in ward round. If I was someone who would shout, swear or kick off then understandably controlling my emotions is important however, my emotions have always been upset and tears. I have grown to realise that this is quite often an appropriate response but for years, I didn’t feel that way because of how some professionals labelled my upset. I think this again comes to a serious misunderstanding of personality disorder (even in services) as my upset has often been deemed as being manipulative in order to get my own way if my requests were not met or I wasn’t progressing how I would have liked. This in itself became distressing and led to me feeling like I was ‘bad’ for getting upset and crying.
As, I have said, I no longer feel like that, thanks to having my feelings positively reinforced along the way from good mental health professionals, but I do still find it hard when I cry in ward rounds because of what it churns up for me. Earlier on in my ward round experiences, I would cry then walk out and it would affect me for days. As time went on, I would cry but stay listening in ward rounds even though I wouldn’t talk, and now I still cry yet remain in there whilst expressing what I need to however uncomfortable it is. A little while back I was told to “stop that” by a staff nurse when crying in a ward round, which felt hugely demoralising and invalidating. The fact is that even in psychiatric services in 2020, this attitude does at times still exist, and ward rounds are an extremely distressing process for so many patients up and down the country, due to the reasons I have mentioned and whatever else that may be individually triggering for them.
What has changed for me is ward rounds are a far less scary and intimidating experience since coming off section and becoming an informal patient. Of course, this is a good thing, but I think it also says a lot for how often it feels like some professionals like the control aspect. Now being informal means there is a ‘power-shift’; we are now, to some extent, equals! I feel like I am spoken to more respectfully and properly listened to. I just think it is sad that this is only just happening because of becoming informal. I haven’t changed, my views haven’t changed but now they agree that I am making the best decisions for me, whereas before there has been doubt or thoughts that I may have had an ulterior motive. The status of being ‘informal’ also allows me to relax a lot more because at last I have choices; I have freedom and I am no longer accountable to the team but to myself. It is a great feeling, and ward rounds have not brought any upset or tears since coming off section - however I think they will always trigger something inside of me just because of the significant negative experiences I have had over the years which to some extent could have been prevented.
My message is if you are reading this and are having similar difficulties in ward rounds then do try to be brave and let them know how the process is making you feel. Not all my experiences have been bad, and there are many really great mental health professionals out there who will want to listen and help. Having an advocate in your ward rounds is also an option. If you are a professional who sees patients in ward rounds then true validation is so important, we can handle being told “no”, we can handle constructive criticism but finding the courage to open up in front of a whole team and then feeling unheard is the most lonely, demoralising place in the world… don’t let that be your patient.”
14 February, 2020
“Happy Valentine’s Day everyone… I thought it was important to write an entry today to just let everyone know that the most important love in the world is to love yourself. Don’t get me wrong, for many years I never believed that and always thought it had to come from externally, but I think you will find that if you love yourself, then you are in a much better position to be happy. So, if you are on your own today, I understand that it might be hard and probably lonely, you may even feel like nobody cares, but I do. I genuinely do care about all of you.
So, it being Valentine’s Day… let’s start today… just spend a few minutes thinking of something positive about yourself… if that is too hard for the present, then think about something in your past that you have felt proud that you have achieved or done… that may still be too hard and if so… then think about something nice that someone who knows you would say about you, it could be anything but it is important for you to just hold onto that for as long as you can manage.
Some of my readers will find this easier than others, although it is difficult for most people to be kind to themselves. Even the littlest act of kindness can go a very long way and little acts grow over time, so don’t give up. From me… if you could think of something positive about yourself or that someone else would say for whatever reason then… you matter, you are important and you can begin or work on loving yourself, even if you are not there yet.”
3 February, 2020
“Wow… its been 12 days since I last wrote and I have no idea where time has gone?! I did have a really emotional few days last week and cut-off slightly where I spent a lot of time in bed or on my own. However, after allowing myself a few ‘duvet’ days, I knew I needed to push myself so headed down to the beach for some much needed ‘head space’, then along with a few other things aligning, it all fitted back into place. I just want to add how it isn’t always easy for me to pick myself back up though, I know a lot of people think my ‘upbeat’ approach to life means that everything is now okay. That is not always the case and just because I had a great day yesterday doesn’t mean that I will not have a terrible day today. I guess life is just like that, there is no certainties. Yes, I do all I can to ‘protect’ myself from having terrible days but there are so many external factors that are out of my hands, and even the internal stuff isn’t straight forward! I just do my best…
Some good things: I really enjoyed my break away, and I have been referred to that accommodation I told you about. There should be a flat available soon with the relevant assessments currently being submitted so I am very excited and am keeping everything crossed! I have also been on a mission the last couple of days. As I may have mentioned I am planning a ‘Time to Talk’ day event for the 6th February as part of the Time to Change campaign. I am arranging a really chilled social afternoon with games and refreshments to get people talking about all things mental health, aiming to help break down those barriers that are attached. I probably won’t have time to write another entry until after the event so I will let you know how it goes, but to also say that wherever you are, there is bound to be a local Time to Talk event so why not give it a go and attend? The emphasis isn’t about your personal story and it is not pressured in any way, I just truly believe that if we face the negative stigma together then we will go a long way in crushing it… we’ve got this!’
22 January, 2020
“Only a day later but another really positive day! So, today is an important anniversary of mine and in the past I haven’t handled this period very well at all however, today marks three years without ANY self-harm. I am super proud of myself and I really don’t mean it in a ‘big me up’ kind of way, but for a number of years I self-harmed most days and I never thought I could be free of that pain… I actually am now. Don’t get me wrong, days like today bring some sadness and can be tricky at times but it is all proportionate to what has happened, and I don’t feel like I need punishment anymore. It is such a freeing feeling and you know what, I like this new ‘me’. The ‘me’ that doesn’t fight vulnerability, the ‘me’ that allows myself to experience emotion and the ‘me’ that actually likes myself. HUGE steps!
I have also gone away today for a few days, and am going to have some ‘me’ time, sleep when I want to sleep, eat when I want to eat, ignore my phone when I want to and binge on Netflix… perfect eh! So, I am writing from my hotel room now but on my way here, I diverted to have a meeting/discussions about potential work opportunities once I am living in the community. I am VERY excited about what might be available for me, I feel like there is a great platform for me to learn and I have so much to give.
I’m going to rest nicely tonight…”
21 January, 2020
“What a great day! I travelled up to London this morning to meet with Jo Lehmann from the St Andrew’s Communications Team, to go and record an episode of the ‘No Really, I’m Fine’ podcast. Firstly, it was the first time I have been to London in many years so meeting at Paddington then heading to Canary Wharf was quite an eye opener for me (as well as exciting!). The podcast is run by the Mirror Group and therefore we were right in the heart of the press offices and everything was so busy! We met up with the amazing podcast host, Gemma Sherlock, which felt really relaxed and informal and soon after meeting we just started recording. The interview lasted for about 50 mins which really didn’t feel like that long, although I did notice a soreness to my throat towards the end as we chatted ALL things mental health. From my story of entering, then transitioning through services for the last decade, to what it feels like to be labelled with BPD and the stigma attached to it, where the system could be doing better and my hopes for the future. I literally felt like I went through my own personal journey as we were talking, and you know what… I feel proud that I was able to share such a candid account of all I have been through (because there really is a lot!). The episode is available here. I hope that it does give insight into what it is really like living in secure services with a mental health condition and that it can give hope to anyone who may be experiencing what I have encountered over the years. As always, I would love to hear your feedback (or answer any questions), which you can do through Twitter.
After the interview we took the cable car over London which I had not experienced before and with such a clear day, we really could see for miles. It was just a fantastic ending to really positive day because I also received a phone call from my home team: they are no longer going to pursue me going back on section and they have identified some accommodation that should hopefully be suitable for me, so that is a huge relief and very exciting! As always, I will keep you updated…”
19 January, 2020
“Since last writing, I have had the most stressful few days that I have experienced in a long time. So, I spoke to my home team and they want me to return to Cardiff as that is where they can sort out accommodation and a community mental health team for me. I told them that that is not what I want due to a number of reasons but mainly because I do not think it is the right move for me and after 11 years in services, it needs to be right. They have seemed to take that on board and have asked whether I am in a position to privately rent? Although that is ideally what I would like to do, I am not in a financial position to do that, so it is back in the hands of my home team.
If that uncertainty wasn’t enough, I then had a psychologist from my home team come up to see me on Thursday. I just thought it would be a brief chat, however he went into all of my history of how I came into services, things that have happened whilst in services, a complete breakdown of the therapies I have done and where I feel I am at now in terms of moving on. It was a lot in the two hours I spent with him but I could have handled that; what I have struggled with is he said that his medical colleagues in Cardiff are considering whether to come and do a Mental Health Act assessment on me to see whether I should really be off section. I felt like I had been punched in the stomach. I can only describe it as freedom is something you take for granted and when I lost it in 2009 it was still not something I fully appreciated, but as the years have gone by and I have got myself well, I have discovered it to be the most precious thing in the whole world. Coming off section and getting it back last month was the best feeling ever and it scares the life out of me that I could lose it again.
To cut a long story short and after speaking to my team here and my solicitor etc, I really do not think that I will go back on section as everyone agrees that I do not fit the criteria to be detained. However, the stress of this hanging over me or even having to go through the assessment, I just feel to be really cruel and unfair. I have worked so hard and just wish people would stop seeing me for my history but instead, the person I have become today. These last couple of days more than ever, I’ve just wanted to shout, “give me a break!”. All I want to do is to be able to live my life in the simplest way possible.”
14 January, 2020
“Wow… I feel like a new person! Having a few days away from a hospital environment is just what was needed for me to see my whole future ahead of me. Coming back wasn’t hard but being back isn’t too enjoyable, as I am back to the shouting, messiness and disrespect of those who are just not in the same place as me in their recovery. I want my life back as soon as possible and I am going to speak to my home team today to let them know this. But… back to my weekend…
Firstly being back in my hometown, I got to see just how so much has changed. We were in one area and if I was taken there blindfolded then I would have never recognised where I was, it was quite strange. Seeing family and friends was sooooo nice! We just had a sort of ‘open day’ at my Mum’s on the Saturday where people popped in and out. We stayed up till midnight making dens with my nephew and niece before taking them to the Science Museum in Cardiff on the Sunday which was great fun. I had some chill time too which was nice. My friend also cut my hair and I got to put some flowers down at my sisters grave which actually meant more than I had realised it would. Although the weekend went perfectly and I am looking forward to visiting regularly, it has actually made me certain that I never want to live back there again. My Mum’s house will always be home as I spent my whole childhood there, but the town is no longer my home, and nor do I want it to be. If anything, by going there, I got some closure too which has also felt quite important in me moving forward with my life.”
10 January, 2020
“Croeso y Cymru… (Welcome to Wales). Yep, you’ve got it, I’m writing this on the train whilst I am heading home for the weekend. I feel so good and am extremely excited as this will be my first night out of services in 11 years. When you look at it like that, it is a huge step, but it is not scary in any way as I am so ready for this and I just look at it as an achievement I have worked hard towards. This is what real freedom feels like and I cannot get enough of it. I am really looking forward to seeing my family and friends but also just enjoying my own space. I will try and capture my whole weekend in a blog entry next week… hope you all have a good weekend, too.”
7 January, 2020
“My commissioner and care coordinator came over from my home team yesterday and have put me in a bit of a position, as alongside my doctor, they want me to return to Cardiff. They say that this is where they can sort out accommodation for me, which they are suggesting should be 24-hour supported with a community mental health team available for me. This is not what I want, there are a number of reasons why I do not want to return to Wales right now, the main one being I do not think it is the right move for me. I explained that I will make it work wherever I go because I have been in services for so long and I am determined to not return to hospital once in the community, however it would be a lot easier if I get the right move for me. My commissioner seemed to take what I was saying on board, my care coordinator didn’t say anything and my doctor basically said that I am in a ‘catch 22’ situation and it will be almost impossible to house me outside of my area, and if it does happen then it is going to be a lengthy wait.
So, as you can imagine, it wasn’t the news I was hoping for, but I am going to stick to my guns and push for the right move for me however long it takes. It is really frustrating as when it comes to this point, it is all about money and politics. I have always had a harder case being a Welsh patient in England, however it was the authorities who moved me out of area and kept me out of area for 11 years, so maybe they should have considered that back at the beginning. I have built parts of my life in the last 11 years in Gloucester, London, Nottinghamshire, Northampton and now down south. I feel like I have been passed from pillar to post and I have gone along with every move, even though they haven’t all been the best for me, but I am taking control now and holding out for the move I want. I will keep you all updated…”
5 January, 2020
“It’s 12 days since Christmas so it is all officially over for another year, meaning all your decorations should have been taken down - although our tree is standing strong in our lounge (and I have not got the energy or desire to take it down!!).
So, in my last entry I told you about my big news which I have to admit has still not faded and it has given me a new lease of independence. I can literally taste my freedom and have been spending longer periods of time outside the unit, whether in town, cinema, at the beach or out with my family & friends. Have seen a few good films and am currently considering whether to get a monthly pass. It will definitely be cheaper for me, but I don’t want to commit to a specific cinema chain until I know exactly where I will be living in case they don’t have that chain in the area. I have also been planning a few days home for next weekend, I am really looking forward to it as are my family & friends, and it will be a real step forward in regaining control of my life. I am also going up to London later this month to record an episode on the “No really, I’m fine” podcast which is a leading mental health podcast, so am also really excited about this. I will post you more details on this later on in the month.
Before I go, I want to remind you of my post prior to Christmas saying that if you have any questions about living with a mental health condition or what it is like living in secure services then you can e-mail the link below or DM me on my Twitter account."
1 January, 2020
"Happy New Year! How has the Christmas and New Year festivities been for you guys? I think there are so many expectations over this period to be happy & enjoy yourselves and I am well aware from personal experiences that quite often that is not the case. If you have found the holidays difficult then please don’t be hard on yourself and just focus on looking after yourself instead. I have been lucky to have had a great Christmas/New Year, especially considering I am in hospital and I would like to share my news with my loyal readers.
So, on Christmas Eve Santa came early for me; I got back from some last minute shopping to be told that if I was willing to remain in hospital then I could remain here informally and was no longer on my section. I know right! I thought all my Christmases had come at once. I have been sectioned for 10 years and was hoping to come off my section at my tribunal, but we all know how my tribunal reports had not left me very hopeful. Then my section was due for renewal on the 23rd December and my doctor decided I didn’t warrant being on a section. It felt huge, it is huge and felt like real recognition of all the hard work I have put into getting myself well and the progress I have made. I have literally been buzzing for the last 8 days, I have woken every morning still feeling like pinching myself because all of a sudden I actually now have real choices. Like, where I am living or what I am doing hasn’t changed at all, but I am choosing to be here, I am choosing to make healthy choices for myself rather than them being enforced… the realisation of this is liberating.
I’m not 100% sure of exactly what comes next as I have never been in this position before. I have my home team coming over from Wales next week so we can discuss what sort of accommodation/care package would be best for me in the community and then I guess it will be a waiting game until the right package is found. It is all very exciting, even as I’m writing this, it all feels new & exciting, the novelty has definitely not worn off and I don’t think it will due to this being so significant to my life.”
December 25, 2019
"Merry Christmas Everyone! I hope you all manage to have some enjoyment throughout today whatever situation you are in, whoever you are spending it with. If you are struggling or have difficulties to face… I want you to know that the journey we have been on together since March this year has been epic, for so many reasons, and I will be thinking of every single one of you today.
I will be taking a break until the New Year so I will see you in 2020… x x x ”
December 22, 2019
“Wow… I am shattered. It’s Sunday evening and I am winding down for the night, I’m tired, worn out, but have had an amazing weekend. Christmas kind of came early for me yesterday as I had a family visit with my mum, brother and gorgeous nephew and niece. We had such an amazing day and a really unforgettable one too for so many lovely, special and significant reasons for all of us. I met them from the train station, my brother had been on his work night out the day before, so he really wasn’t up to much, my Mum was well, and the kids were outrageously excited which just felt perfect. We took a walk along the seafront then onto the Pier where I had pre-booked wristbands for them to enjoy the rides. It was a little annoying as due to evening events being set up, some of the rides were not in operation which so happened to be most of the rides that they were only tall enough for. Although, kids are kids and were not bothered in the slightest, they enjoyed what they did go on (well apart from my 8-year-old Nephew on the ghost train!!). We spent a couple of hours on the pier where my Niece enjoyed applying lip gloss on my lips and constantly saying “look, that wall is red… our favourite colour” or “I want to hold your hand”, literally they were glued to me and was totally lush.
We then went to a restaurant for food and to open our Christmas presents, which my niece was very excited about. It also worked well as a good bribe to make her eat all her meal! They loved their presents and they got me a beautiful star necklace and bracelet which they put on me before we left. I love anything to do with stars so much.
I then walked them back to the train stations and said our goodbyes, I did feel a little sad not being able to go back with them, but I felt really good and fulfilled too because it was such a magical day. I got a message shortly after saying that my nephew had had a little cry because he was already missing me so we video called when they got home, and all was good!
Today, we’ve been to the cinema to see CATS, which I really enjoyed although it wasn’t everyone’s cup of tea. I really enjoy musicals, so much so I knew it was going to be right up my street and it has just left me wanting to go and see the stage show again (I have seen it a couple of time throughout my life).
So, I am now relaxing on my bed with my lamp on which provides a nice and chilled atmosphere. I’m going to spend some time chatting to a loved one on the phone, then I will definitely be ready for an early night. Night guys…”
19 December, 2019
"Whoop Whoop!! Another milestone as we have reached DAY 300 of this blog and I continue to enjoy sharing my life with you. I hope it still feels fresh, informative, interesting and an enjoyable read for you guys too. If you have any suggestions or there are things that you would like me to cover then you can now get me on Twitter, my handle is @star_welsh, my DMs are open.
So, I have now become a ‘Time to Change’ champion, which involves me continuing to begin discussions surrounding mental health in order to reduce stigma and misconceptions. I am really excited about the annual ‘Time to Talk’ day on February 6th, 2020 and am hoping to organise an event in my local area, which I will keep you posted about.
I also managed to navigate my way to another town today, on the bus, in the rain to find my local Mind charity shop, as I would like to do some volunteering with them. I actually feel like I did quite well considering it was all very new to me, but I had a chat, picked up an application form and got myself back, all within my leave time so I would describe it as mission successful.”
16 December, 2019
“Another Monday, another Ward Round and today… no tears!! I kind of prepared myself beforehand for bad news about my Christmas home leave so managed to have a robust back-up plan and took that into ward round with me. As expected they decided that they wouldn’t give me overnight home leave even though that had been the plan and I have done everything appropriately that they has asked of me so out came Plan B. Fortunately I have got an amazingly supportive family and good friends and they have arranged to come over for three separate days over the Christmas period, meaning I will get to see most people that I was hoping to catch up with if I had gone home for a few days. It's not the ideal set up but we are back to that saying, "it is what it is" and I guess I just have to suck eggs until they change their thinking and begin trusting me for the next step. I have said this numerous times, but I cannot do any more than what I am already doing and that is all that I can control. Hopefully the rest will just fall into place over time.
In general, the atmosphere here hasn’t been great, I have been shouted at numerous times by certain patients and I just live among disrespect. It is so difficult living with multiple other people, and some are really poorly but some are just rude and that can be really challenging at times.
I’ve been managing to get myself out everyday in the local area, have spent time down at the beach. Although it is cold, I wrap myself up and actually really love spending time down there – it feels so freeing. I also went shopping for the day yesterday, which was really enjoyable. I discovered the stationary shop ‘Typo’ which I feel in love with, especially with a 40% discount on everything! I will be going into town tomorrow, but I am pretty much sorted now for Christmas (and skint!) so will just have a wander around and sit in somewhere with a drink.
I also have a telephone call with St Andrew's Communication team and NGi Solutions in the morning to talk about stigma surrounding complex mental health and where I feel more work needs to be done. Hopefully we’ll be able to put a piece together that can be pitched to the newspapers and hopefully feature. I will of course keep you updated.”
10 December, 2019
“Today has been a crappy day emotionally as my solicitor emailed me my doctor's report that he has written for my tribunal next month and it really feels like he has a dim view of me. As I mentioned in my last blog, there had been feedback regarding me isolating myself etc which I had thought had been cleared up, but my doctor obviously does see it as a concern. Not only that, he went on to say that although I can name/describe the skills that I should be using, in his opinion I am not effective in using them. It felt like a huge blow as I have completely turned my life around over the last few years thanks to these skills. The staff who I have previously worked with have always stated that I have good insight and use my skills to great effect, so this was a shock to me.
Don’t get me wrong, I still find some things hard and need support at times but isn’t that normal in life?!?! There were other points from my doctor that I disagree with and actually am hurt by if I am honest, I am not sure how I even move forward right now. I was expecting him to oppose me coming off my section at my tribunal so I am not disappointed by that, but I am about how things are going to move forward for me whilst I am at this hospital, under a doctor who gives me no merit for all I have achieved nor believes in me or where I am at. I guess I am finding it hard also because as with any report it dredges up your history and I have done a lot of things in my past that I am not proud of because it has hurt other people. I have come to the reasoning however, that I cannot change the past, but I can be a good person in moving forward and ensure that I do not cause harm to anyone else in my life. I am completely committed to that, hence the huge investment I have put into my therapy over the years and learning about myself. I don’t know, I don’t feel great about any of it right now, but I will be alright, I just need a bit of processing time so I can then work out how I move forward…
Well this has been a heavy entry, thanks guys for being on this with me, I do find this whole process cathartic and a good way to express my thoughts and feelings constructively.”
5 December, 2019
“So, today has been mixed… my home team came over to meet with me which I was looking forward to as have not met with them before. However, it went from a low-key appointment to a meeting with some members of my team as well, and some points were raised that I was really unhappy with. Apparently the feedback my home team has been getting is that I am isolating myself in my room and not engaging with staff or peers. Firstly, It took me by surprise as I certainly don’t feel like I isolate myself at all; granted I do spend time in my bedroom when not off the ward or in sessions but that is because I enjoy my own space, as well have plenty to do in my room. As I have told you, I have recently started studying, I write this blog and have also joined the world of Twitter to express my views surrounding mental health… my point is, I am pretty busy in my room and actually doing things that are meaningful to me. Hanging around communal areas has never really been my thing as quite often you are living with people who you wouldn’t actually choose to live with, and the patient mix here is very different to my personality and needs. I am polite, chatty and get along with everyone but don’t really want to be spending a lot of my time with people who are quite frankly, not my cup of tea!
I felt a bit frustrated by the comments because I was put in a position where I had to defend myself from feedback that was not accurate and paints a negative picture of me when I feel I am doing pretty alright. I was then a little annoyed as felt that if this was an actual concern of the team here then why has nobody discussed this with me or taken time to find out as to why I spend time in my room to see if anything was troubling me? It is almost like the expectations here between staff and patients are not mutual, the staff interact with you on a day by day basis minimally, like the understanding is that if you are ok and you have no concerns then that’s good and all is well. Therefore, that is how I have been living the last 6 weeks or so because I have been ok, I know staff are there if I need them, but I haven’t really needed them. However, they are seeming to want a lot more from me, they called it ‘ticking boxes’ but in all honestly I am fed up with jumping through hoops and just want people to accept me as ‘me’. I don’t know what else I can do to show them that I am doing really well actually without being put in a position of having to do stuff that is not meaningful to me or me behaving in a way that is not ‘me’. Its difficult, really difficult… I guess I feel that I am now at a point where I really know myself but the team here are getting to know me too and once again, every part of me, every interaction is being dissected. I don’t know why I am surprised; it has been like this for 11 years now but inside I feel like screaming “give me a break”, I just want to live my life.
As I mentioned, I have joined the world of Twitter under my name ‘Welsh Star’ so if you are also on Twitter then give me a look up and maybe you could follow my journey through another angle. It would be great hearing from you.”
2 December, 2019
“Another Monday meaning another ward round for me and as you have probably guessed, it also meant some more tears, BUT I am ok. I did get a bit emotional but stayed in the ward round then came to my room, composed myself, spoke to a loved one and began reflecting on the positives all pretty quickly. I then wrapped up warm, took myself out for a nice walk and let all the emotion go which felt quite freeing. That has then allowed me to have a really productive evening - I have set up my online banking, written some cards, sent some emails and now capturing it all in the moment with you guys.
I had some family up yesterday that I mentioned in my last blog, so we went out for a few hours which was lovely. We took a walk along the beach front and pier before going for something to eat and a nosy around some shops, I really enjoyed myself and it truly felt like normality, which I find I crave more and more these days.
My college course arrived at the end of last week, I did have to do an English and Maths test online to be fully accepted on the course which I didn’t revel in one bit! School was a very long time ago, but I survived it and have put some time aside tomorrow to do some studying. I will give you my initial thoughts of the course in my next entry.”
27 November, 2019
“Wow… what a couple of days, with my leaving video from St Andrew’s being uploaded on their website and social media! It has already been viewed a number of times which I am really pleased with plus have had some lovely feedback and a great tweet from Katie Fisher, the CEO of St Andrew’s Healthcare. I am just so glad that I have managed to get my message out there in another form. On a truly personal level for me, it has meant even more as I wasn’t sure if I was going to share the video with my family, but I have, and they are really proud of me. It’s not that I was embarrassed by my story as to why I was unsure to share it, but I have tried over the years to keep some stuff from my family in order to just make everyone’s lives a little easier. It is hard to explain because I am fortunate to have an immensely supportive family, but some things have been painful, and it can be difficult to talk about, so I have kept a lot of things to myself in order to protect everyone (including myself). It feels good though, to just share ‘me’ and for it to be ok. I always knew that I was accepted but having them be proud of me really means a lot.
I have also over the last week enrolled on an online college course titled ‘Working with people with Mental Health needs’. It is only a level 2 course but if I enjoy it then I may progress to my level 3 and with it being an online course then I can develop a study timetable that suits me - I believe that I will get a lot out of it. It’s exciting times, I enjoy learning and keeping those brain cells active plus it will be something extra ‘under my belt’ for when I’m in a position to go back into employment next year.
We are currently full here at the unit, which means there is a lot going on and every day is different! It is not as noisy as my previous placement but can still be frustrating at times, I continue to keep myself to myself and just get involved in all that is on offer. I have begun some unescorted town leave, which has all gone well, plus I have finally managed to open a bank account, which is going to make things so much easier for me!
I am planning some time out this weekend including a visit with family which will be unescorted for the first time in a number of years so I will let you know how that goes. In all, everything continues to move in the right direction although that doesn’t mean that my life runs perfectly on a daily basis. I still have inner struggles (as I guess most people do in life) but I am pretty comfortable with who I am, what I can do to make myself feel better, I have an amazing support network and also a whole tool box of skills that I have discovered over the years that work for me. They don’t always have to be huge interventions, in fact most of the time they are pretty simple but when you find even the smallest of things that help you in some way then it is important to hold onto that, take a mental note, write it down and practice using it whenever it may be suitable. I always remember and even say to myself sometimes that whatever situation I am in, ‘I have got this’. Try it out…”
19 November, 2019
Happy birthday to me! So, another year older, another year in services but another day closer to getting my life back, my freedom and living in the community. I have my family coming over today to celebrate so we are going out for lunch, which will be really nice. I have also received lots of lovely messages already today from those who love and care about me. I feel so much more connected having a phone! Then, later on I might play some games with the other girls followed by a film, a piece of birthday cake, some telephone calls and my day will be complete. Happy birthday to me!
18 November, 2019
Different place, different people but same “me” in ward round… I got emotional and cried! Today has been tough. I went into ward round about lunchtime and really struggled. I had prepared what I wanted to discuss, had sought advice and feedback prior to today, I felt confident and believed I had asserted myself well. I explained that I am ready to take control of my own recovery and want my teams’ support in doing so… but it didn’t really go to plan.
I think the hardest part was that I didn’t feel listened to at all, the way I was spoken to felt quite invalidating and we all know how I find controlling people really difficult, so as soon as this was triggered inside me, out came the emotion. And then I get so annoyed with myself. I wanted to kick myself under the table for crying but there was no going back at that point. I tried to put my views across but was relieved to leave the room and hide in my bedroom for a while.
Fortunately, I was able to make a phone call in my room to someone who really understands me, and I allowed myself to be comforted which helped to ease the intensity. This then led into frustration however, as I felt like I had been pigeon-holed into a box rather than my care and my needs being treated as individual… it’s really hard. I don’t know if I interpreted everything as it actually was; it is difficult when emotions get triggered and then I accept that sometimes you can lose perspective.
What I do know is that I am ready to get my life back, like so ready, and I guess I find it hard when I feel like I am being held back. It’s also hard because I am new here and they don’t know me that well; if they did then they would know that ward round is a difficult environment for me anyways and that their approach in there was bound to trigger stuff inside me. It would be a good idea if they read my blog and could see what I have shared with you guys, as I am far better at writing how I experience things rather than explaining it verbally. I’m now really tired and I have puffy eyes from crying so I am going to get some sleep.
12 November, 2019
Hellloooo, how are you guys? It’s been 2 weeks since I last wrote and so much has changed for me, and I imagine lots has changed in your lives, too. Time is a really strange thing, as is life. I am in such a good place mentally (and environmentally) right now but I know it is not going to be like that for everyone reading this. Therefore, I hope I can be a beacon of hope for anyone who is having a tough time at present – hold on in there!
So, I have moved and am kind of living the dream in comparison to how I’ve lived my life for the last 10 years. As you know, I am from Wales by the sea and I have missed that, but I am back listening to the seagulls every morning and have views of the sea/beach from my bedroom window. I’m not so much living in a hospital but in a big house with some other patients, with the whole focus being on rehabilitation and getting us back into the community. Due to it not being a big hospital like St Andrew’s there is less to offer in-house, but many more opportunities to do things in what I sometimes call the ‘real world’.
One of the things I have already explored is going to college, and I have enrolled at an open day. I am hoping to find a course that I will benefit from, but will also benefit me when going into employment. It looks like I will be having a relatively short stay here as have covered all my therapy in my previous placements, but I have been told that a big hurdle is getting accommodation in the community and therefore, that is where a delay occurs. I have taken some advice from a mental health solicitor who thinks I have got a good case to become informal (meaning I will no longer be detained under the Mental Health Act but agree to be in hospital), and so I have been having discussions with my doctor regarding this. Everything is looking positive but there is still a process, as with anything in life, and I have mellowed to that over the years so I can accept it for what it is without getting frustrated by it. One thing services has definitely helped me with is being more patient - yes I would say that I am now a ‘patient patient’ and life has become a lot easier.
There has been so many perks since moving; I now have a mobile phone on me at all times and considering I have never had a smart phone until recently, I’ve sussed it out and am reaping the benefits from being connected with the world. I have also discovered Netflix and I have to say, I am hooked, TV will never be the same again! I have begun Recovery College here and I am also now sorting out my own medication daily (under supervision), which is huge step as I have relied on staff for the last 10 years for these sorts of things. The next step is to have a week’s supply in my bedroom and be independent in taking them at the right times daily. It is something I am keen to get implemented as it will put me in good practice for when I leave here and is my responsibility. The grounds are also really nice here, it’s just a shame the weather has been so rubbish but I am out doing something daily. I went to the village hall Christmas fayre last weekend which was cosy and nice, plus I have been shopping for my own food at supermarkets. I’ve done some Christmas shopping in Somerset, have been to the cinema and got acquainted with the buses which I realised I had not travelled by in about 7 years (although found nothing has changed!).
My loved ones are all pleased with my move and the extra contact they can have with me; they can see how happy I am and how being in a more relaxed environment suits me. I have a visit next week for my birthday which I am looking forward to, and I am hoping to go home for a few days between Christmas and New Year, so that will be pretty amazing. The someone special in my life has been a huge support with my move and I just want to do a shout out to you, so you know just how important you are to me and my recovery.
Before I go, for anyone who is following my blog but has not listened to the ‘On the Ward’ podcast then do give it a go. I feature on episode 4: Moving On, plus all the episodes give great insight to what it is like living in mental health services in 2019. You can find the link here.
29 October, 2019
It’s my final morning here at St Andrew’s but will definitely not be my final blog entry. I am enjoying this journey that we are on far too much, and hope that you guys are also doing the same. Give me a week to settle in and I will get something from my new place over to the communications team to upload for you to read. There are lots of people who have touched my life in so many ways since I have been here and I will miss you all.
Goodbye from St Andrew's but hello to the rest of my life…
27 October, 2019
Ok, I’m Welsh but I have to say congratulations to England for their win over New Zealand yesterday and getting to the final. It’s a shame it won’t be an all British final, but well done to Wales for getting as far as you did; it was a close match today boys and you have done all of Wales proud.
My news is that I am leaving St Andrew’s on Tuesday, so I am in my last 48 hours and I am really looking forward to my move. It has been quite a journey for me here. From living in a difficult and challenging environment at times, to gaining confidence and building self-esteem in the various opportunities I have had across the charity. It is certainly not a chapter of my life that I will ever forget, but actually a chapter that I can build upon and further myself in on this very exciting journey that is life. I have managed to say a lot my ‘thank you’s and goodbyes; already, and had my final session with my therapists on Thursday which was moving in its own little way. I have reflected this weekend and realised how different my ‘endings’ are from my last placement, and that is testament to how much I have grown in a relatively short space of time. I am independent now, which feels pretty special to acknowledge, and am empowered – as a patient, but more importantly as a woman who is finding her place is this crazy world that we live in! It sounds huge because it IS huge. When suffering with poor mental health every step feels huge, but I am so well right now (and happy ) and that is the biggest step of all.
Before I go, I want to mention my great home visit that I had on Friday back in Wales. Seeing family and friends is always special, and it was good to catch up with you all even though, I have to admit, I was little anti-social due to the fact I got my first ever smart phone! I hope you know I love you guys though.”
20 October, 2019
Come on Wales! I’ve just watched the close Rugby World Cup match between Wales and France, and I am so pleased that we are through to the semi-final, but will we face Japan or South Africa? I have a feeling the next match this morning is going to be just as epic! I am heading into town shortly to pick up a few things that I need for moving on, but I thought I’d check in and post an entry.
So, I had my last meetings on Thursday with the Restrictive Practice Monitoring Group and our Quality, Safety & Assurance Committee. I have really valued being a part of these groups and I feel that I have given feedback that has been able to inform and influence some of the work going on within the charity. It was nice that I got to have a chat with our CEO who I developed a relationship with right at the beginning of my time here. We have worked together closely on many projects and she has always backed me with support. It’s going to be sad leaving for many reasons, with my work within St Andrew’s being something I am so passionate about, but that passion is inside me and I will take it with me wherever I go, whatever work I undertake. Fortunately I have a couple of chill days Friday and yesterday, so I will be refreshed for our staff inductions tomorrow morning and will hopefully get some news of a date for my move.
16 October, 2019
Its official, I will be moving very soon. I still feel slightly mixed but I am very excited too. I am so ready to leave my current ward. It will be somewhere outside of St Andrew’s but I definitely feel that this is a good move for me too. As I mentioned, I will continue posting my blog through St Andrew’s so there won’t be any change for you guys, and I am really pleased that you will be continuing this journey with me.
My week has been busy, busy, busy! It was great being at our Essex site on Monday where I recorded Episode 4 of the ‘On the Ward’ podcast, which was all about discharge and moving on. It should be live on the St Andrew’s website over the next week so have a listen to it and please post feedback! Then yesterday we hosted the East Midlands ‘Recovery & Outcomes’ group run by Rethink, and we had a great session. I spoke a little bit about my story, however the focus topic was ‘maintaining a healthy weight.’ It was also nice for me as a member of staff attended who used to be my ward manager at my previous place, so we had a good catch up and I was able to tell her about me moving on. Today, I have been interviewing for the Patient Engagement Advisor post. This would be the person who I would be working directly with if I was staying at St Andrew’s, so the position feels pretty close to me. I have come away feeling a lot of things from the interviews so I need to sleep on my thoughts and have further discussions with the team tomorrow. I also need to get an early night, as I am involved in back to back meetings tomorrow so I don’t want to be yawning throughout – good night!
15 October, 2019
I have some good news and bad news. The good news is that following my CPA and discussions with my home team, I am being fast-tracked to a rehabilitation unit. The bad news is that it means I will be leaving St Andrew’s!
I feel a mix of emotions, hence the reason I have needed some time to process everything since my CPA. Of course I am really excited as it will mean a relatively short period of time in hospital before moving into the community, but I had seriously considered setting up a life for myself here in Northampton and I am going to miss the work I do here. There are two rehab units that are in discussion which are both a lot closer to home. I already have a preference, and I will let you know which one I will be moving to as soon as I know for certain. More news is that I will definitely be continuing this blog through St Andrew’s, so you will be able to access it exactly the same way as you do now. Hopefully I will be able to share another view of things through transitioning and being in a less secure environment where I will have a lot more access to the community, and hopefully a whole new set of opportunities. These are exciting times for me, with the move expected to be pretty quick so I will keep you updated on everything.
I hope you enjoyed my special blog for World Mental Health Day. I am going to our Essex site on Monday to give an interview for the ‘On the Ward’ podcast, so I will post more details on that next week.
30 September, 2019
I had my 12 week work placement review today and all has gone well, so I now switch over to voluntary hours where I will be doing a little extra too. I really enjoy my role with the Patient Engagement team and time certainly flies by when I am working. After my review I spent some time scoring job applications for the advertised Patient Engagement Advisor role that I will also be interviewing for soon. It was the first time that I have done competency scores before actually interviewing so I really wanted to get it right but I felt confident and am happy in how I have scored.
What I really like is that my input is 100% valid; it is not tokenistic in anyway and it was recognised that I would be directly working alongside the new Patient Engagement Advisor and, therefore, it made perfect sense that I would be fully involved in the application process, and would even take the lead.
Don't get me wrong, I am guided and can have as much support as I need in my role but I am treated as an 'equal' and completely part of the team. A thanks really needs to go to my supervisors in this because they really wouldn't have it any other way and this is an example of true patient involvement and co production at St Andrew’s.
So, tomorrow I should find out about my future move and step down from this ward, I really do hope that I get to stay at St Andrew’s as I am full of ideas and am involved in various projects that I would like to continue with. It is my CPA (Care Planning Approach) meeting on Wednesday so hopefully a plan will be put into place. We have these meetings every six months and it’s an opportunity for my whole team to meet within and outside St Andrew’s to reflect on the previous months and make plans for the next. They are always anxiety-provoking meetings for me as they are a larger scale ward round and we all know that I am not a fan of them, but they are really important and I just hope that I can feel confident enough to say all I want to say. I will let you know how it all goes.
BTW, look out for my Blog Special for World Mental Health Day on 10th October.
25 September, 2019
It is only Wednesday and I already have had a really mixed week.
I got off to a great start on Monday morning, with a big group at inductions that seemed to receive our presentation really well. I work alongside another patient when doing inductions and I am in a great position in helping to boost his confidence and help him achieve to his full potential. We have got a really good partnership and I just want to say well done to him because he is doing so well. I think the kind of 'mentoring' role might suit me!
It was also great to see at inductions that we had some new starters for a new role around the hospital of Peer Support, which means St Andrew’s employing people who experience of mental health services. To those new starters- I hope you have a good week of inductions and settle well on to your new wards.
Afterwards I continued with my Patient Engagement work placement, which was mostly about catching up and planning our next few sessions, it was all going in good stead.
In the afternoon I was due to speak to the new Preceptorship Nurses (or newly qualified) about the importance of a Care Co-coordinator role but due to low staffing, I couldn't attend. This did frustrate me as if my unescorted leave was established then it wouldn't be a problem for sessions like these that really boost my confidence, help my recovery and give a good insight to staff across the charity.
Anyway, Tuesday came and again I was expected to be involved in the Preceptorship training, but this time I found it difficult to attend due to some dizziness that my observations showed was due to low blood pressure. I was fine sitting/ lying down but walking to the main building for the training just felt like an impossible task and so I didn't attend.
Now today, I feel ok but I have not got anything on and I haven't been able to get out on leave either.
Wednesday is normally our DBT therapy day but we are having a break this week so I think I will just do some relaxation and meditation on my own in my room this afternoon before having a busier day tomorrow.
22 September, 2019
Hmmm... I'm bored! Anyone got any exciting stories of what they are up to or have been up to? I was struck down with a sickness bug on Wednesday and Thursday which was really rubbish, normally I can handle being sick pretty well but at one point, I just sat in my bathroom on my own and cried, I felt pretty poorly. Then Friday came and I wanted to eat anything and everything, I basically had two breakfasts and two lunches.
I was supposed to have gone into town in the afternoon with my care coordinator so was banking on a McD's, but she had to go home sick, which was a bit disappointing but we'll get to go out this coming week instead.
However I did get to go into town on the Friday morning for my volunteer charity shop placement, which I am really finding my feet at.
It is amazing at how much goes on behind the scenes of a charity shop and is definitely more demanding than your average high street store. I am already feeling like I have a purpose there and it is helping me to regain a good work ethic that is hard work yet rewarding too. I am quite lucky that St Andrew’s are supporting me in this placement and I would recommend to others who are in a similar position to me.
Unfortunately, I haven't been able to get out on any leave this weekend due to the ward dynamics and low staffing, I try not to get too frustrated by it as 'it is what it is' but with it being nice weather, it would have been nice to have got out.
OMG, I'm talking about food again... but I also like to go to our on-site cafe, Tompkins, for lunch on a Sunday, as I am not really a fan of the Sunday dinners they deliver to the wards, but I have had to make do today. In fact I am not really a fan of much of the food here and especially so at weekends, I never really thought of myself as fussy but I guess I must be! Well, I told you that I was bored and I suppose this has been a boring entry so I will write again in a few days.
16 September, 2019
Whoop Whoop! We are 'DAY 200' of this blog and what a journey it has been so far. I continue to enjoy sharing my life with you and hope that you are also benefitting from following this blog. I am sorry that I have not written for a while, there was a mix up in sending my entries through to the right person to upload but you should see that a few entries in one go have recently been uploaded and here I am again now.
So, my biggest news is that a doctor from Wales came to assess me today and he is arranging for my local Rehab team to come and see me. Hopefully this will be during the next two weeks and prior to a panel sitting on the 1st October to discuss where, and when, I move to next. I am still hoping to remain in St Andrew’s and expressed that yesterday although nothing is certain and I guess I just have to keep my fingers crossed!
I have been really enjoying my work placement and have thrashed about some good ideas on moving projects forward within the patient engagement team. I am also planning a patient engagement newsletter, so those internally can look out for that hopefully next month.
It was great to see the new starters at inductions this morning, it was a very small group and I hope you all benefitted from hearing from us. It will be good to see you on the wards and I have had some great feedback from recent new starters who really valued the patient input at their induction and if anything, helped them to decide to take on the role here as they believe they can help make a positive difference to patient lives — great news!
My ward is still unsettled at times but I am plodding through, I am pretty much off the ward or in my bedroom so try to distance myself away from it all. I am really sad as the member of staff who used to come on my day trips with me, has left so I am really missing her positivity and the support she continually gave me. She will be missed by a lot of us and I'd like to wish her all the best for her future.
I have got a quiet day tomorrow but I am attending the research committee on Wednesday afternoon, which is a first for me and am looking forward to it. Research has always spiked an interest in me and hopefully I'll be able to bring a different perspective as a patient voice.
I then have a busy Thursday and Friday so will catch up with you this weekend and let you know what I have been up to.
25 August, 2019
Who is enjoying the sunshine on this August Bank Holiday weekend??? Not me... I have been in bed the last couple of days with a sore throat and headache thing, that just won't shift. I love the sun, but not this weekend which is really, really annoying!!
My trip to Cambridge however, was really nice and we did have good weather too so we had a picnic down by the river and just enjoyed being away from the hospital for the day.
I really am ready to move on from my current ward and time away from the ward just emphasises that. I really think it will help me with my recovery. All of the my healthcare team at St Andrew’s and in Wales agree I’m ready to move wards. But the process is just very slow, I just feel like I am 'existing' which is a pretty rubbish feeling to have.
A move could probably be pretty simple if it wasn't for the fact that I am from Wales who ultimately make all the decisions. I just need them to come and assess me to see that a move within St Andrew's would be the best option and then all systems could be go. I really want it so much.
Before I go, a birthday shout - out to my Mum for yesterday, and who has taken my Nephew to London for a couple of days, I hope that you are having an amazing time.
20 August, 2019
Well, my last few days have been busy beginning with a visit from my Mum on the weekend which was really nice. She travelled by train up from Wales on Saturday morning and I took her into town for the afternoon. We just mooched about the shops where she picked her upcoming birthday present and then we went to a certain pizza place for food which we enjoyed.
She stayed at the hospital accommodation on the Saturday night, which she said was really nice and then we had a visit at Tompkins (our restaurant) on the Sunday where we had some lunch before she travelled back. In all, she said that the travelling was pretty straight forward, which I'm glad. but . It is also good to know when it gets to the stage for planning my visits home using public transport..
So, yeah I had a good weekend although was annoyed yesterday as I couldn’t go on my inductions and my work placement in the morning.
My unescorted leave within the hospital and progressing into the community will be so beneficial as it will just allow me to have my independence back, although the whole process is proving to be very slow and very frustrating. Anyway, today, I was at Morrison's first thing to get my picnic stuff ready for my trip to Cambridge tomorrow and this afternoon I assisted in an interview at William Wake House within the psychology team. I'll be getting an early night tonight as I've got an early start, I'll let you know how my day out goes.
15 August, 2019
Today I attended my first team meeting with the PALS, Complaints, Carer & Patient Engagement Team which went really well. It is a monthly meeting and one I will now be attending regularly. I really feel embedded within the team and enjoy giving input as well as learning from those I work with.
Together, we have got a lot of experience from a variety of angles and we work really well. I feel valued & respected by all members of the team and so yes, this is a little shout - out to you guys, I really enjoy working with you!
After the meeting I met up with another patient who I do a lot of work with and a member of the research team to discuss where we could assist in the consultation of research policies. It was a useful meeting with a plan ahead of spending some time reading a set number of policies in view of giving any feedback from a patient's perspective.
I'm now just going to relax tonight and am going to a well-known dessert restaurant tomorrow afternoon with my care co-ordinator before she goes on leave so am looking forward to that.
11 August, 2019
Just a little entry for you guys to check in. I hope that you are all enjoying your weekend although it is a little blustery!
I have had a quiet few days, but have a busy week ahead with lots of stuff to look forward to too.
I am off to the cinema again on Tuesday evening and am going to a quaint little Italian beforehand from what I have heard it is really good food. It is just across the road from the cinema and we have been eyeing it up for ages so it's time to give it a go.
I have then got my Mum coming up on Saturday, so I am heading into town with her for the afternoon, she is then staying overnight at the visitors accommodation here and we will have another visit on Sunday before she gets the train back to Wales. I'm looking forward to seeing her plus showing her around a bit.
I have been trying to arrange to trip to the beach for the following week but it either takes a forever amount of hours to get there or it is really expensive so I think I'm just going to have another day out to Cambridge which I really enjoyed last time.
A nice picnic in the park and a look around the town, I think a day away from the hospital is just what I need right now.
I say that because the ward continues to be unsettled so I spend a lot of time either off ward or in my room so yeah, I fancy a day out without alarms & the stress of the ward.
Oh, I just realised the time and I'm heading to Tompkins for lunch so I have to go but I will write more soon.
8 August, 2019
Today was our BENN's (Birmingham, Essex, Nottingham , Northampton sites) meeting and it went really well. It was much better attended so a big thank you to our CEO who gave a much needed push for the right people to attend (whilst also attending herself) and well done to all the patients who came to raise really interesting & valuable points.
I felt much better about the meeting as a whole, I feel that we now have a really good working agenda and we are achieving the overall aim for this type of meeting.
It was my second time at chairing the meeting and I felt quite composed, until I realised that my 1:1 Psychologist was there who is also Clinical Lead for our /PU.
However, I received some positive feedback prior to the meeting from our Advocacy representative based on the previous meeting and in the end I just took it all in my stride and felt that I did a good job!
I really hope that we get the same level of attendance at the next meeting in October even though it clashes with the Executive Board meeting; we changed the dates for the BENN's for it not to do so but the dates of their meeting has changed and therefore, we might have a problem.
Unfortunately BENN's is still not known charity wide so if there is anyone working at St Andrew’s or living here who is reading this and would like to attend or even just more information of the BENN's then please contact Hayley Lucas at the Patient Engagement Team who will be more than happy to help.
Thanks again to all those that attended today and especially the group that travelled to us from Essex, it was great meeting you all.
02 August, 2019
It's been 10 days since I last wrote and my time has been really mixed. After my last entry, I decided to be kind to myself and gave myself a 'duvet' day, which was much needed and understood by my team, even though I missed our group Dialectical Behaviour Therapy session.
The following day I felt much more motivated. I attended the Executive Board meeting for a 20 minute slot to discuss our Birmingham, Essex, Nottingham, and Northampton sites (BENNS), my work placement with the Patient Engagement Team, and my blog. I was nervous attending the Executive Board as it was kind of a big thing and I’m not sure when a patient last attended, but everyone helped me to feel at ease and yeah, I think you could say, 'I smashed it. I think it went really well.
I then held a focus group in the afternoon to discuss our Patient Charter, which lists patients’ Rights and Responsibilities. I hope next time more people will be able to attend to give their feedback, but we came up with some good points that will be fed back at the next BENNs.
Then on Saturday I had a very exciting day as I went to ComicCon in London which was pretty awesome. I want to say a huge thank-you to the member of staff who took me, I'm so glad that we got to be superheroes together for the day!
Life has been a little tough on the ward this week, living with people who suffer from lots of different mental health issues can mean that life can feel a little unsettled at times. I want to be back in the 'real' world more than anything right now, but writing this blog helps me to express how I’m feeling so I can continue with my recovery.
I didn't then have the best start to this week mainly due to the ward and lack of sleep so I missed Monday’s Inductions and have just taken it really easy on myself.
I went to see my therapist yesterday, it was good to catch up. And I am off to the cinema today to see The Lion King with a few other patients from the ward.
I am not planning on much over the weekend, I will probably hibernate in my room quite a bit, catch up on some sleep and take some time talking to those I love & care for over the phone.
If anything exciting does happen then I will be sure to write. Have a good weekend.
23 July, 2019
This is like the saddest entry that I have written as I feel really sad right now and I don't know what to do with myself.
I'm currently sat in my room typing on my laptop. I normally use the ward computer room, but I can't bear to be out on the ward right now. I have cried so much today. The ward environment is so stressful as many patients are quite unwell, but it’s actually the first time that I have felt that I can't cope with it; I'm literally hanging on with a thread.
Being on my own isn't a great thing right now either however, as all my head wants to do is cut off and shut down, but I have tried being in the communal areas, but many patients are really unsettled at the moment so it’s hard for me to be around them. Some of it has even been aimed at me today from a patient I have become friends with, so it is hard to not take it personally, even though she is lashing out at a lot of people. I just feel so stressed and feel completely done with this ward and I’m ready to move on.
As the people around me are so unwell it’s starting to affect me. I am normally pretty resilient and can take a lot, but I still suffer from some trauma symptoms and I had a really bad nightmare last night so am really not on form. I feel exhausted but am scared to shut off as it has not always been a good thing in my life.
It is early evening right now and the alarms have literally only just stopped going off, the staff are ridiculously stressed too.
I’ve brought up some of the issues and hope going forward it improves. I remember being unwell myself and can empathise to some extent. Being in a mental health care hospital can be hard at times. This is the reality. There are good times and bad times, as today’s blog shows.
My piece of advice to patients or anyone who just can’t see a way out, is to open up and speak to staff and take little steps just so you’ve got something to focus on.
21 July, 2019
Hey, so I thought that I would add a post as I am just relaxing before going out for a few hours this evening, which I am really looking forward to. Not a lot has happened but it has been over a week since I last wrote and so here I am!
I did go to see the new 'Spiderman' on Friday night at the new cinema complex at Rushden Lakes, which was very nice by the way, and the film was pretty cool albeit different from the previous style of movies. The graphics were incredible and I would recommend to go and see it, even if you are not a superhero geek as me, but just to see the effects. Afterwards I went to a well-known burger joint which never disappoints!!
Oh, I do have news... so, that meeting took place on Thursday and it’s been agreed that it is time for me to move into a less secure environment so my care team are arranging a Gatekeepers Assessment for the next few weeks. Basically that means that I will be assessed by doctors from Wales, even though I wish to stay in Northampton, but they pay for wherever I am placed so have the overall say, and will decided what level of security and where I will go next. I have about 7-8 weeks work left with my therapist so I am hoping to move about then as I am definitely ready.
The ward continues to be quite unsettled with patients being quite unwell in their various behaviours, but I keep myself to myself and focus on evenings like today where I'm going out and connecting with the 'real' world as that is where my future lies.
I have my work placement in the morning with the Patient Engagement Team, which I always look forward to. I find the role so rewarding and it is only early days, I really feel like there is so much that I can achieve and strive to achieve.
I don't know where my work will lie when I am in the community and I was talking about this to someone close to me last night, but I know where my passion lies and that is what I am going to follow.
The day that I am no longer passionate about what I am doing then it is time for me to do something else and re-look at myself. Well, that probably sounded a bit deep, which it wasn't meant to for a Sunday afternoon, lol. Enjoy the rest of your weekend.
12 July, 2019
What a busy, exciting & scary week I have had so far plus today I have been at St Andrew’s for 1 year which feels quite significant. It means a year without any incidents and shows to me (& everyone else) that I really have changed and can manage challenging situations however, difficult they are. It feels so good to have such distance from my self-harm, for a number of years, hurting myself became a huge part of my life and yeah, I just hold more value on myself now to not want to put myself (& my body) through that trauma. Something that was traumatic this week was a choking incident that scared the hell out of me. It was pretty serious and shook me up for a while.
Fortunately I had staff around me who I could almost go as say as pretty much saved my life, you know who you are and I thank you guys. Also those who stayed around and came to the hospital with me afterwards, I really needed you and am just sorry that I snotted & cried all over you!!
So, the exciting of this week was that I had my 1st home leave from St Andrew’s and it went amazingly. Spending time with my family was pretty awesome, I haven't seen my little brother for quite a while so getting to chill out with him was something really special for me. My Mum also spoiled us with a roast dinner that was on par with Christmas Lunch and a homemade white chocolate cheesecake which can only be described as heavenly- thanks Mum! Having to come back to the ward afterwards was pretty rubbish but not just because I was missing my family; it is just that I want to be part of the real world. Being home was so normal, my Aunty & childhood friend also popped in and I miss the normality.
I have not found the ward I am currently on therapeutic for some time and I think that is just because I am in a different place than others on my ward in where I am within my treatment (and services). I am desperate to move to a less secure environment just so I can be more independent and move closer to my goal of living in the community. I'm not far from it and there is a professionals meeting here next week to discuss me moving on so please everybody ... keep your fingers (and toes!) crossed for me. I will keep you updated."
07 July, 2019
"I know, I know, I have been a bit of a stranger but I am back on it and you'll hopefully get a steady flow of entries from me now. Things have been a bit all over the place if I'm honest. Throughout my experience of doing this blog, I always said that if I felt under pressure then I won't write and will take a break. I guess with a lot of things going on, I did feel a bit under pressure so decided not to force it & just let it 'be' and now anyways, I am back (and I'm feeling good!) but sometimes things change quickly.
So, I have begun my prolonged exposure trauma therapy which was extremely tough to start and probably why I didn't write the week before last. However, it is slowly getting easier and yeah, I acknowledge that I'm doing good (that is normally really hard to say!). Like with any therapy, it's hard but what I am doing is definitely going to give me a better quality of life and just lose some of the high intensity anxiety that I have for years carried around. I am definitely making progress!
Then last Tuesday I went to Drayton Manor Theme Park for the day which was a great day out however, I didn't know it was possible to get as wet as we did on the Log Flume!! The following 2 days I was in bed with a banging headache so maybe the mix of getting older and going on extreme rides doesn't quite mix - I was definitely feeling ropey! I have had visits with family today and I am going on home leave on Wednesday which I am really excited about. Everything is going in the right direction for me.
I have also now officially started my 'Expert by Experience' Work Placement with the Patient Engagement Team which is something I have been working towards for a while. I can just feel the positive things that are coming for patients here at St Andrew's. This is a new work placement that I feel I can really contribute to making successful change. We have inductions in the morning so I look forward to meeting all you new-starters and I hope that you settle into life here at St Andrew's really well. For my regular readers, I hope the last 2 weeks has been good for you but if it hasn't, don't give up, we are all in this together and together we can achieve anything. If you have currently lost hope, then please know that we are holding that hope for you..."
18 June, 2019
Hey guys! How has the last few days been for you??? I'm good; I had inductions yesterday morning at the Great Hall which went really well.
You were a quiet bunch but gave great feedback from our little activity! I value being involved in inductions so much, there are many reasons why I take it as an important part to my role in St Andrew’s and here is a little story as to why...
Last Friday, we were short staffed on my ward and 2 HCA's came to support us. They both recognised me from inductions a few months ago and we got chatting. I discovered that one of them wasn't sure whether this was the right role for her but attended the induction in hope to finding the answers. Her feedback was that it was my speech / chat/presentation (whatever you want to call it) was what inspired her to take the job here at St Andrew’s as she felt she could not only do the role but make a difference to patient's lives too.
Talking to her was so lovely; she was down to earth and just valued the normality in the role that I talked openly about in her induction that every patient wants. Hearing that I had inspired her to come to St Andrew’s with the hope of enriching patients lives really felt humbling. This is why I take part in inductions every fortnight, this is why I shake it up for you guys who are on induction and talk so openly about not only my experiences but my hopes for a good staff member too. It shows that patient's input in these inductions really do make a difference and as a charity this is the good work that we are quickly spreading throughout the rest of the hospital so that patient involvement is at every step of the way.
Following inductions yesterday, I went and met the team that I will be working with my 'Expert by Experience' work placement who all seemed so lovely and I just see myself fitting into the role quite easily. It is a great opportunity for me and a role that is being completely supported all the way up to our Chief Exec, Katie Fisher.
Patient involvement in St Andrew’s isn’t tokenistic, it is the vision and the way forward in all that we do.
14 June, 2019
"And more rain!!.I have had a busy couple of days, as you will probably know by now; Wednesday is our DBT Therapy day on the ward so there is always stuff to think about. Then yesterday I went to Nottingham for an 'Impact' Event about co-production. It was a really interesting day, very busy with a variety of disciplines all over East Midlands and a lot of networking got done. However, the reason we were there was to discuss the theme of 'transitions', what works? and what needs improving?
The morning started with the Directors/ Executives of the East Midlands letting us know their commitment in making sure that we work together to make better transitions for patients and then they partook in a Q&A with the room that went down really well. I will admit, some of the things they talk about are way over my head, there is a certain jargon that I find difficult to get my head around but even with that I felt completely involved. There is a blended pilot beginning here at St Andrews which means one of the women's wards are becoming a medium/low secure ward which if it works, will be amazing for the transitions for women in services.
The whole idea of a blended ward came from a piece of research that had been carried out by 3 service users alongside NHS England which looked at the length of stays in hospital for women, the distance they were from home, what helps their recovery & what makes it more difficult and a variety of other information of what a women's journey is like through secure services. All this information has been put together with such a powerful message that big changes are beginning in the way that secure services work together.
I feel really privileged to have been involved in this research in my previous hospital and pleased that alongside many other service users/patients we are having a voice and are being heard."
10 June, 2019
"What a wash out of weather eh! Who else is waiting for the June sunshine? However, considering it has been a miserable day outside, for me on the ward and in Ward Round was pretty bright. Yep, you heard me right; Ward Round went really well and easily without any tears. We talked a lot about my future, options of where I can move to once I have finished my current therapy on this ward and also what we can do in the meantime so that I am continually progressing. I sometimes find it difficult as I have mentioned before with my RC (Responsible Clinician) and although he couldn't stay for my part of Ward Round, I had a positive 1:1 with him prior to it and yeah, I'm happy.
I've got lots of reasons to be happy in my life right now and moving in the right direction here, towards my future really helps me to remain well and focus on what it is I want to achieve in my life both short term & long term. A goal for a while of mine has been to begin an 'Expert by Experience' work placement here at St Andrews (I may have mentioned this before?). I do a lot towards the charity anyway and a lot that would come under the placement although it only actually got finalised today and I am really pleased about it.
I am so passionate about trying to 'break that stigma that we do still get in here even though we are inside the hospital. I want to change that and therefore, see a massive part of my role in getting additional patient input to what matters to them whilst bridging that gap between patients & staff. I have been here at St Andrew’s for nearly a year now and I have already seen changes happen (and happening). It is a really important role for me and I am looking forward to see how far I can take it ... I never just settle, I always strive for more. I like to see it as a quality of mine although some may disagree but it keeps me driven to meet effective change!
Well, I think I have said enough for one day and finally I just want to emphasise just how powerful a positive Ward Round can be to your mental well-being."
8 June, 2019
"Whoop Whoop... today we are celebrating 'DAY 100' of my blog and I want you to know that I am enjoying every aspect of it. I also want to say a HUGE Thank-you for all you guys who are following me because it wouldn't be such a success without you, my readers, and it feels pretty special to be in this with you.
Well, today I was planning a 'fitness walk' but it has rained & rained & rained some more so I settled for some lunch in Tompkins meaning my healthy plans soon led to cheesy chips!! I am also going to an all you can eat Chinese buffet tomorrow evening with one of my friends on my ward so am looking forward to that and will definitely have to get back on with a fitness walk on Monday. I think I have got a pretty average week ahead; there is the possibility of me going to Nottingham for the day on Thursday of which I will tell you more about when I get some more details. It is the following week when I am really busy but I am still trying to live in the moment thing and right now I am feeling pretty content. There is some good stuff going on in my life at the moment so a shout-out to those who go the extra mile of making me happy - you know who you are.
One thing we need to tackle this week is Ward Round on Monday. I am hoping to start discussions surrounding moving on from my current ward and to lesser security (don't worry I will still be writing!!). It would be a really good move for me and a move I feel completely ready for so that is what I need to express in Ward Round even though we all know that I don't do that great with the whole Ward Round thing. I will write on Monday and let you know how it all goes, fingers crossed for me & no tears again eh!!
I hope you guys get to have a good weekend whatever you are doing and I will be back in a couple of days.
3 June, 2019
"Heeellooooooooo... I'm having a bit of a silly day; we all have to time to time eh! I am looking forward to going to a local Caribbean restaurant tonight for food & 'mocktails' then off to the cinema to see Aladdin which has had great reviews. I really enjoy the cinema and go whenever I am able. I have seen that 'Dark Phoenix' is out on Wednesday so I will need another trip soon!
We had our staff inductions again this morning which went really well, since starting to do them I have always thought that we could improve the way we deliver the information & stories, and today we tried it differently. It was a real success, we had a slightly smaller group of the new starters than usual which I think helped my co-peer as it can be very nerve racking but I am so pleased at how well it went (and how well it was received). Together with the Patient & Carer Engagement team, I would say that we 'smashed' it; genuinely it could not have gone better. Of course I gave a shout-out for my blog so I am hoping for some new readers, and remember, I love receiving your comments & feedback, it is a real incentive to keep going & keep writing when things get tough.
A bit more news that I can share as I have talked with my family and my plan is to stay around the Northampton area when I am discharged from St Andrews rather than move straight back to Wales. It was a pretty big decision for me to make and I have really thought about it but this is where I see the next stage of my life being. I am getting to know the area which is really helpful and there are opportunities here that I feel I could explore which I don't necessary have if moving straight back to Wales. I guess although I am in hospital, I am happy here and there are not many places in my life where I have been able to just 'be' & be happy. My family have taken it well; especially my Mum who I was worried about telling due to her having to travel around the country to visit me over the last 10 years but she gets it and all is good. I'm good, like really good and it is a nice feeling to have!!
29 May, 2019
"I'm really good at the moment, I have got a lot of positivity going on inside me and I have been thinking a lot about my life outside of hospital. I know I am a bit away from that right now but hopes and goals are really important whilst you progress through the system. It is weird, but I just know that I am going to have a good life shared with good people when I get out of here. I am determined for it to work for me and those closest to me and I am actually quite excited about it.
Today was our DBT therapy day although our lead psychologist couldn't do our teaching session this afternoon so we just covered everything this morning. On the one hand it was nice to have an afternoon free of group therapy, but I got pretty bored too so am looking forward to another day being over!
I did meet up with the PALS, Complaints & Patient Engagement lead who I work closely with on a variety of projects throughout the hospital and we got some good work done. I am officially starting a work placement with the team (I might have mentioned this before) and I am quite excited about it. We already have a long list of areas where my input could be useful and we are constantly adding to it. Today, we completed the Terms of Reference for our BENN's meetings as the one in place was well outdated and pretty vague. We now have our aim, the purpose and what we want to achieve from the meetings and hopefully we continue moving forward in making BENN's a success that it 'should' and easily 'can' be.
So, although a quieter day, it has also been productive in some areas which I am pleased about. I don't know what is wrong with me but I just can't spell when typing tonight, my brain is all over the place but it's all good and as I said when I started this entry, "I'm good too".
24 May, 2019
"Wow, it feels like I have been away for ages although it has only been 5 days. I have had such a busy yet productive week and have just found myself chilling out today. So, my adventure at the safari park was pretty amazing, we got to see all the animals as well as a scary encounter of a pack of lions fighting a metre from our car and a giraffe wrapping its tongue so tight around my hand, I had to use my other arm to pull it from its mouth!! There was also a baby giraffe that was soooo cute and we took lots of pictures. There was also a theme park there and considering I haven't been on rides for well over 10 years, I am quite proud of myself and managed to keep up with my much younger friend. It was altogether an awesome day and we are now considering another trip to a different theme park in July before the kids break from school (I don't want to be queuing for hours to get on a ride!).
Then on Wednesday I spent a good chunk of the day at Cliftonville sitting on the patient panel in interviewing potential peer-support candidates. St Andrew’s are currently recruiting for Women’s & Brain injury services and I was impressed by the applicants who had applied. It is always difficult when a candidate loses where they are at due to the intensity of nerves and my heart really went out to some of them. In essence though, I think it is a brave decision to apply for a role where you have had lived experience and I want to say 'well done'.
The following day I also found myself down at Cliftonville as we had our bi-monthly BENN’s meeting and the first one that I had the role of chair person. I was nervous as I have never chaired a meeting like this before and especially not so of one that was to be two and a half hours long. I think I did ok, I could have done better but I finished with in time and that was one of my worries. It was a disappointing meeting overall however, as alongside the manager of PALS & Complaints we have worked hard in trying to make the BENN's a success and part of that is having the right attendance.
Our Essex & Birmingham sites attended whilst Nottingham managed to dial in but we didn't get the attendance from the management based here at Northampton and therefore, it was very difficult to address action points and get the answers that patients needed. I feel that it is great to give patients a voice through the set-up of BENN's but if there is no-one there to direct the issues to and therefore, there is no effective change then you are actually taking that voice away. I think it could be quite invalidating and that needs to change. I have committed myself to the BENN's and am therefore, not going to give up on it but I hope that the right people can take note at how frustrating it is for us as patients here.
And today, chill day... Generally some really good stuff has happened to me over this last week inwardly and so I am just going to enjoy the feeling and... and that's it really. Have a good weekend.
19 May, 2019
"Hey l I have just come back from Tompkins (our hospital café) and celebrating a 'friend's birthday who is on a different ward. I think there was 6 of us eating together but with the accumulation of escorting staff we took up more much of the café! It was nice though, it is always good to socialise and see 'friends from previous paths of life. Now back on the ward and I'm bored, it has started to rain outside even though it is still warm but I am not going to get a sun tan in the rain! I actually have no idea what I am going to do to keep me occupied so I will just ramble for a bit.
I went into town yesterday for a few hours which was nice and on Friday I had a busy day with /PU meetings, timetabled sessions and my 1:1 therapy. That has given me a lot to think about, my therapist has got the knack of really getting into my head and making me think but it is important stuff and will actually help towards me having a better quality of life. This week ahead is also busy, on Tuesday I am going to a Safari & Theme park with a friend which I am looking forward to. It's going to be a long day but I won't have time to rest as I am back to back with stuff on Weds/Thurs but I am not going to think too far ahead right now. I am trying the whole 'living in the moment' thing but it is pretty tough, my head is like an untrained puppy (all over the place!).
Last week I decided that I needed to do a bit of soul-searching and found myself back reading a book very close to my heart. I kind of thought that I would sham the book with you but... this sounds very sappy... it is kind of sacred to me too and I am not sum whether I am ready to do that sharing yet. I hope that doesn't annoy anyone but instead please try and understand my reasons why. I just have weird ways with some things that either you will appreciate or cause you to stop following my blog. I definitely would rather if you stayed!
So, I am back to the same point and having no idea as what to do, we are short on staff so I have got to find something I can do independently and there is not a lot on a lazy Sunday afternoon. Usually sleeping would be the option but for some reason I have struggled to nod off in the daytime so I am looking for something to do whilst being awake!!
I wonder what you guys are up to on this damp but warm Sunday afternoon? If you have got any ideas to share then please do. I won't get your responses today but we have a lot of boring Sunday afternoons!?!?
I am just going to finish off with a shout-out to someone I know and to remind them that birds have feelings too so please avoid them when out driving!!!"
13 May, 2019
"It is good to notice that more of my posts have been uploaded and I hope that you are enjoying reading! I have had a really productive day today with speaking at the inductions this morning so a shout-out to all you lovely people that are about to start with us within St Andrew’s. I really enjoyed & valued the time spent with you today and I hope that you all settle into the charity well. Then this afternoon I had my monthly Ward Round and guess what? I didn't cry ... I actually asserted myself really well; I got across the points that I wanted to make and all feedback was positive so most definitely a success!!
I am planning a few trips now too, so will be heading to Cambridge next month to go punting & have a picnic. It is something that I have always wanted to do and it is a real feel good factor when building positive experiences. I really appreciate that I still get to do the things that I enjoy & interest me whilst I am in hospital as I had a totally different experience at my previous placement. And the biggest news is that I am booking my tickets for ComicCon in London for the end of July. I have never been to one of these events before so to say that I am excited is an understatement. I have got a bit of work to do in the meantime though as alongside the member of staff that is taking me, we are going to make our own capes!! Any tips would be most welcomed ..."
3 May, 2019
"I am still here for those who may have thought I had stopped writing, I've just had a quiet few days and my link the communications team who upload my entries has been on leave so sorry if you are getting bits in dribs & drabs. Big News... is I went to the National Service User Awards on Wednesday and had a great day. The event is run by Cygnet Hospitals annually which gives recognition to the exceptional work that is continually carried out by service users around the country. The venue was so beautiful, a huge marquee overlooking a river with gardens full of fountains and stunning plants I wildlife etc. I managed to do my presentation without too much of a stutter (I do this when I am nervous) and although I didn't have the sound working with my PowerPoint, I think I did my course justice which was the essence of me being there. It was a long day of about 12 hours, I went with a member of staff from my team who I get on great with and we had a really enjoyable day. It meant it was also the longest I have been escorted away from the hospital and the fact that it was a success means I will be-able to plan future trips. I am hoping to go to ComicCon in London at their July event so watch this space...
I know this is a relatively short entry but my highlight of the week was these awards and because of the long day, I spent yesterday in bed elevating my leg as I have a few problems with it due to past DVT's and therefore, it needed a little TLC! I am hoping for a sunny bank holiday weekend and will definitely be around to blog some more."
25 April, 2019
"Boring, boring, boring… I have had a really quiet week so far and the sun hasn't lasted as well as I was hoping for it too either! I know some families are still on the Easter holidays so I hope that you are enjoying yourselves although I'd expect by now that you are also looking forward to the kids going back to school! I have got another few days of not much happening but am then going to an Awards ceremony next week so will let you know how it goes. On a separate note, who is going to watch the new 'Avengers' movie today? I wanted to go to the midnight viewing but am not going till next weekend now so like 'Game of Thrones' I don't want any spoilers!!! Like I am a bit of a superhero geek and I did cry when Spiderman died in the last movie so I will probably be a blubbering mess next weekend - tissues on the ready please!
I can't believe that I am out of things to say, not like me eh but then I did say how boring my week has been and it is not so easy when you are in hospital to just find things to do. I used to enjoy driving so would quite often go for a nice drive on the coast when I was in the community and having a quiet day, they are the simple things in life that I, really miss BUT I know I'll get back to that and you know what, I am really going to take advantage of those simple things! If you are able to, then you should too, there is always space for you to have a bit of 'me' time and that space is really important. Never underestimate the power of good mental well-being and that's my bit of advice for the day - enjoy your day!"
18 April, 2019
"Hey. I hope you are all well. Sorry that I've been away for a few days although I'm not sure if it'll be noticed. So, for those who have been following, I had my CPA on Wednesday and there were no tears, which in terms for me and meetings, means a great success! I was pleased with how it went and had some really good feedback, I've got my goals now for the next 6 months and hopefully then there will have been discussions regarding moving onto a lesser secure environment. I'm going to try and firmly listen to my RC (Responsible Clinician) and to focus on the goals (the little steps), and then everything else will fall into place.
I also want to mention about the opportunity I had on Thursday to meet and speak to Band 4 staff in training. I only knew about the meeting 48 hours in advance and only actually knew who and what I would be speaking about approx 2 mins before I went in, but it went really well. I actually feel really grateful at how welcoming and open the staff were in listening to me, my experiences & what is important to me in see in a staff member. It went from me talking, to lots of questions being asked and then a more general group discussion. I hope those who were there found it beneficial and I just want to thank you all as I got a really good vibe that you are doing your job because you generally care about us, those you look after. #high-five
So, the rest of my week has been pretty pants as I've spent 2 days in bed with some sort of sickness thing, I've just felt really weak and all-round rubbish. However, I'm pretty much back on form today and had my 1st trip to Rushden Lakes. It is a really nice place, a little nippy by the water but I did some shopping, mainly window shopping, and something to eat so in all a great few hours out. Coming back to the ward, it is nice and settled, some peers are in front of the TV box-setting, some are cooking and the rest are doing their own thing in their rooms. I must add there is one huge negative for me today and that is we do not get Sky Atlantic at St Andrew's so unlike a lot of you, I will be missing the first episode of the final season of a well known series tonight so am feeling kind of jealous! My dilemma is... do I ask about it tomorrow? Or do try to avoid any spoilers until it comes out on DVD? What would you do?"
9 April, 2019
"I ended yesterday having an early night with puffy eyes & a headache as I had ward round in the afternoon and I just struggle with the whole thing. For those who don't know, we have ward round once a month where my clinical team meet with me to discuss my progress, any current concerns & plans for the upcoming month.
It sounds simple but for me it is a daunting experience where I feel anxiety for that entire day. I just find the whole thing intimidating when they are there as a team and there is just 'me' on the other side. They do really try to make it comfortable and some people are fine with it but nope, not me. It also reminds me of meetings that were put in place when I was a kid to discuss my care when my view was pretty much ignored, and as much as this is a very different situation, I can't seem to completely shake it off either. So, I won't bore you with the content of my ward round but it often feels like 'they don't believe in me' or 'I'm not doing that great' and I really try so hard to maintain doing well. It's tough, the whole thing for me is an emotional rollercoaster and yesterday (like the previous month) I came out in a blubbering mess. I sought haven in my bedroom and although nursing staff tried to support me, I just wasn't ready for talking and fortunately they knew I was safe and respected that.
Fresh eyes today and yes, I feel a little more optimistic to how my ward round actually went and feedback last night from my ward manager shows that they are willing to take chances with me providing I can prove, with the steps put in place, that I can manage. So, my next ward round is 27 days away but I have my CPA (Care Planning Approach) meeting tomorrow which we have every 6 months - and they are a bigger version of ward round and therefore, just as anxiety-provoking. Sometimes you've just got to accept that 'it is what it is', which I can usually do but after the emotions have lessened! So, wish me luck for tomorrow and I'll put another post out later on in the week."
7 April, 2019
"So, another weekend has almost passed and as usual it has been quiet. I had a bit of a tough day yesterday, didn't sleep too well on Friday night (my sleep is often disturbed) therefore I was already vulnerable and I struggled intermittently with flashbacks. This is a term we often use in hospital - we all know what we are talking about but to those that don't, for me, it is when I re-experience a traumatic memory in the here & now.
They can be really difficult, it is not always visual for me but sounds & smells also play a part and they can come with such intensity that I am completely re-living the traumatic experience again. My flashbacks are often on a scale of severity and yesterdays, although distressing, was also manageable with some distraction. I played cards, some doodling & chatting then finished watching a film in my room once my head felt less wobbly. With my flashbacks I have found that there are two options; fighting them or accepting them. I have fought them numerous times over the years but I always feel like a failure as I remain distressed and they come back. I have now tried accepting them, that doesn't mean that I like them... but it does mean that I understand that they are there because of my experiences and they can lessen if I use distress tolerance skills. That makes it sound easy but it really isn't, it takes a lot of practice and it is only in the last couple of years that I can experience these flashbacks without switching to feel a physical pain or numbness and self-harming. Fortunately I'm generally in a good place
at the moment so with a little support I got myself through yesterday and I'm having a good day today.
I just want to add that what I have described about my flashbacks is how I experience them and that they can be very different for other people."
5 April, 2019
"This is only going to be a short entry but I just wanted to say a huge thank you for all of the feedback that has been posted and sent to the provided e-mail address ([email protected]). This is the very reason I am doing the blog, to break that silence around living in hospital and showing that there are no 'set' ways of doing things. Life is full of possibilities and living in hospital is no different, granted the possibilities change but there is still so much that can be achieved. It is great that staff are reading this blog from a variety of professions within St Andrew's, but it is also great that the message is getting out there to those in the community. I recently had a message from someone who was preparing for an inpatient assessment the following day, and this blog showed her that her life doesn't have to stop her from doing the things she values just because you are in hospital. It gave her hope. Diolch yn fawr (thank you very much) for the awesome feedback you sent, providing hope for others is just going to keep me writing & writing. This is a journey for all of us and for as long as it is beneficial for us all then this blog will continue."
2 April, 2019
"Who knew that shopping and eating out could be so exhausting! Today I went to Milton Keynes by train - my first train journey in about 11 years. What I learnt is 'train stations and trains don't really change'! Nah, all jokes aside, I really enjoyed myself. Milton Keynes shopping centre is huge and far too much to get around in a few hours, but my intention was to get a new outfit, and that I achieved. So, what you probably don't know about me is that I'm a bit of a tom-boy. I live in trainers and comfy clothes, trackies/jeans and oversized hoodies. However, I am going to a black-tie awards ceremony on 1st May so can't really rock up in my Vans. This meant shopping for a outfit was the focus and I did manage to get trousers, top, shoes & bag. It wasn't really enjoyable shopping for these things but it was a case of job done and then I could relax. (Btw, I did then go on to buy a pair of Vans too, my defence... they were in the sale!). I bought a few bits for other people, a couple of Blu-rays for myself as I am a bit of a film buff (Marvel & DC especially) and then we ate at a well-known burger place that was sooooo good. Now I'm back on the ward feeling well tired and can't wait for an early night (is 4pm too early to get to bed though?!)."
1 April, 2019
"My anxiety levels were all over the place yesterday following my 1:1 psychology session. We discussed the options of maybe beginning some exposure work due to an aversion I have developed following an early trauma. Talking about this sort of stuff is never easy, and yesterday was no different. I know that doing this trauma work will definitely give me a better quality of life so it is something I want to do, but I also want to totally run away from it when my emotions kick in. I sometimes feel a bit stupid (well actually you will notice that stupidity comes up a lot for me) for allowing something from so many years ago to keep affecting me, and at times I describe it in my head as a bit of an 'irrational' fear. However, one part of DBT therapy is to always check the facts, and I guess the facts show that it is probably normal to have this sort of anxiety based on my early trauma, even though the threat is no longer present. I probably sound like I'm quite wise whilst describing all of this, although the credit definitely goes to my therapist. It was he who embedded this into my head just yesterday to stop me from being quite so hard on myself and I guess (for now) it sticks.
Fortunately my therapist has a great imagination when trying to explain various points. It always feels like we are going way off somewhere with his stories, but it always comes back to make the very point he was trying to help me understand. I guess we 'work', working together.
Another thing from yesterday was that I went to the BENN's (Birmingham, Essex, Nottingham, Northampton sites) meeting which was definitely better attended than the last meeting but we still have a long way to go. This is not just my own view but also of other patients and staff therefore, the main focus of the meeting was about planning our future meetings. We discussed a variety of questions such as the regularity of meetings, a change of dates/times so that they do not clash with other board meetings, who we want attending and most importantly what do we want to achieve. I felt that it was a very productive meeting with great ideas and a firm understanding that we (patients & staff) are in this together and we want it to be beneficial for all that we do. The PALS team (Patient Advisory and Liaison Service) are now running the meetings going forward and I am the new chairperson! I don't know if that is a good thing or not, I have not really had a lot of experience in chairing meetings."
26 March, 2019
"I feel like I have been away for far too long but at the same time nothing that exciting has happened. Today I have had a 'duvet' day or maybe what I should describe as an 'avoidance' day. I have spent many years of my life in avoidance mode which has quite often led to periods of depression, self-harm and substance misuse so it is really important that I keep in check with so-called 'duvet' days! I am open about this cycle of mine with my team, especially with my therapist and my nursing team know me well enough to check in with me when I have days like today. I am fine though, sometimes it is just nice to let go of my responsibilities (without affecting anyone else) and just spend a day on my own without expectations upon me. So, I guess it was a semi-avoidant day, but I will be back steaming forward tomorrow with our group DBT therapy day.
I expect we get all get stuck procrastinating at times but it is important that we don't get stuck in unhelpful cycles that have a negative effect on our own mental health or affects others. I guess that's my tip of the day!
Don't forget that if you want to make a comment or drop me a message then please do so at the provided e-mail address ([email protected]), I will get all comments albeit with a slight time delay."
21 March, 2019
"Well, what a day, it's only nearly 6pm and morning felt like a lifetime ago! I actually had quite a good, pro-active morning with an Arts & Crafts session first thing and then a community leisure walk with some friends from another ward. My only problem is that I get rather car sick so the journey back from the country park wasn't great and I ended up needing a lie down when I got back to the ward!
I did feel better so went ahead with my 1:1 DBT therapy session which ended up being really tough. I guess therapy is always tough but I had a particularly difficult session last week so found that today I really had to look at the inner "me". That is never easy but I have a really experienced therapist where we have built a good relationship. Having him looking at myself with me means I have a great source of support but at the same time it can be even harder as nobody wants to share those things inside you that we get wrong. It is also difficult because I get worried about being judged and a big one for me is feeling not being good enough. I have such high expectations of myself but my therapist taught me a great lesson today... I can still be good enough whilst wanting to better myself. Even if I hang onto a bit of that then I will have improved from the point I was at in my difficult session last week.
I value the relationship I have with my therapist so much but I know it is definitely not going to be plain-sailing. However, I know that as long as we repair any ruptures along the way, remain transparent with each other & apologise if we get it wrong then we'll be ok. This is a tough road but a friend taught me to believe in myself and I know that I will be ok too."
16 March, 2019
"The first thing to say is congratulations to the whole of the Welsh Rugby squad for achieving the 2019 Grand Slam. I feel proper proud to be Welsh (not always easy when you are in an English hospital) and hope that everyone in Wales parties happy & hard tonight. Scotland, you did your country proud too!
My whole day has been taken up by the rugby but it has also been a patient's birthday so we have celebrated with 'Mocktails' (cocktails without the alcohol) and if I'm honest, I didn't miss the vodka one bit. We have also had a pub quiz with nibbles and a finale of chicken & chips (plus lots of extras). As I think I have already mentioned, we take pride on our ward in celebrating birthdays, we always go big and do some pretty cool things together as a community. It has been a good day although I think I will be singing the Welsh National Anthem in my sleep.
14 March, 2019
"I thought it might be interesting for you to hear what an average day looks like for me on my ward in St Andrew's. I am up at 7am most mornings as the bedroom corridor opens at 7.30am with the expectation that everyone comes into the day area at that time. In reality there are probably 4 or 5 of us that come though at that time; those who can't wait for a hot drink, and me. I don't drink hot drinks but like to get up at my own accord rather than constantly being prompted by staff!
During the next half an hour whilst the day shift are getting handover, the patients gradually come to the day area in dribs & drabs and mostly snuggle back up in their chair for as much rest as possible. I have done the same myself although annoyingly can never fall asleep in the day area so I mostly enjoy the quiet time or read, I read so much nowadays! Medication times throughout the day are 8am, 12pm, 5pm and 9pm and mealtimes tend to follow. So, breakfast starts as soon as morning meds are finished, lunch is at 1pm, tea at 6pm and there are snack times at 3pm & 8.15pm. I tend to eat at all mealtimes; I don't especially like breakfast but it is a condition if I want to utilise my leave on the grounds that morning.
I tend to get 30mins ground leave a day where I can go to finance, the post room, Tompkins cafe but mostly just a nice walk. The grounds here are pretty amazing where I could never get bored! Although most of us have leave written up for more than 30mins a day, due to staffing it is difficult to offer us anymore on a regular basis, however if there is something specific we want to attend like the hairdressers, beautician or activity sessions then leave is normally facilitated. I attend quite a lot of extra sessions so I spend a lot of time off the ward which I find rewarding and enjoy. We also have quite a lot of ward-based sessions everyday ranging from Healthy Lifestyle groups, Mindful music, Arts & Craft and Self-soothing groups. There is a rota so that we can use the therapy kitchen to make breakfast and lunch, and there is also the opportunity to do the weekly food shop at the local supermarket for these cooking sessions. Generally our sessions stop around 4.30pm however, there are some evening social sessions on the grounds on a Tuesday & Thursday night, with us also having a ward movie night on a Friday evening. All of our sessions are decided with our OT team and they are always keen to hear and try out new ideas so that our timetable doesn't feel too repetitive.
I am fortunate to have a really busy timetable because I also attend Community Leisure groups and have 1:1 Community leave. I am also really involved with the Patient Engagement and Experience team so take part in our fortnightly inductions for all new starters to the hospital. There are opportunities to attend meetings & forums, taking part in research projects and to sit on the panel to interview potential new staff for our hospital. It is a role I feel proud to be a part of and one that I am deeply committed to.
My mind is in overdrive thinking about all the things that I take part in at St Andrew's but I am sure that overtime as you get to know me you'll get to find out exactly what I enjoy and I what I get involved in. We have an area here called 'Workbridge' that I have not even touched on but is a place where so many great things happen; I will tell you more over time.
So, as you can see that my days are structured around medication & mealtimes but what goes on in between is based on my hobbies & interests. I am on a DBT therapy ward (which I will talk more about in a later post) therefore 1:1 & group therapy is very important to my weekly timetable and is something I take seriously. Therapy is tough but that is a whole another conversation!
I hope that this has given you some idea to what an average weekday looks like here for me at St Andrew's. Will write more soon..."
9 March, 2019
"I've had an amazing evening with 2 'life-firsts' and a first for about 10 years! At about 5pm I went out to eat at a Turkish restaurant, which I have not done before but I will definitely be doing again. I then went to the cinema to watch Captain Marvel, with it being my first 3D movie and I loved the experience. I wear glasses anyway so wasn't sure about putting on an extra pair but I found it fine. I did however feel like I was going a little cross-eyed at times, but it never took away the excitement or the enjoyment. The screening didn't end until about 9pm so I had referred to it as a "late night viewing" all week, much to the amusement (and ribbing!) of my Ward Manager! I feel sooo grateful for the extra opportunities St Andrew's offers me, and I am proud of myself too. It has not been an easy road for me over the years and these may seem like little things to you, but it has been 10 years since I was last out after 9pm so it has felt like a real achievement tonight. My next aim is to attend a midnight viewing, so watch this space!
Oh before I go, a big shout-out to all my fellow ladies with International Women's Day being yesterday. #gogirls."
7 March, 2019
"Hey! I hope this entry doesn't take too long to upload as I've had a few teething problems with my team this week. They wanted the blog to be a weekly thing as they didn't want me taking on too much. I want it to be more frequent, so at first I was really frustrated, but in fact I can now see that their concern is only because they care. Rule number one is always reflect. It definitely helps me to become more centred and allows me to see the bigger picture! Fortunately I have built a good relationship with my team and was able to express how it was important for me to remain in control of this project. I also discussed how I wouldn't put myself under too much pressure, and if they become worried then we should re-evaluate my commitment (albeit the commitment is only to myself and how I visualise this blog going!). And I say not "too much pressure" because I always put pressure upon myself. I see it as I'm a bit of a perfectionist and work better under a 'healthy" level of pressure anyways! I've just realised that I have rambled on about dynamics that you probably have zero interest in, although I guess it does show that I'm not just "me" whilst I am in hospital, I am "me and my team" and sometimes this can cause difficulties!?
What I really wanted to tell you about today is my attendance at the Charity's Quality and Safety Assurance Committee (or if easier, QSAC!). It was a first for me and for patients to attend in general, although fortunately I was joined by another patient from the Essex site. I received the papers for the meeting a few days ago - all 60+ pages of it. It was definitely heavy reading and if I'm honest, all a bit over my head too. So, as you can imagine, I was a little anxious prior to going today and a little concerned that I had agreed to attend a 3-hour board meeting but... I feel good. Everyone was really welcoming and made me feel comfortable to raise my points, whilst most importantly I felt listened to. I feel my points were valued and will make a difference meaning that I have achieved exactly what I was hoping to do. I feel I have "given" today; given to my peers, to the staff, to the charity and to myself. I am learning that little voices can make a difference, and today, my little voice was heard.
4 March, 2019
"Hi! I've done some really nice things over the last few days which help you to not quite forget, but minimise the negatives of being in hospital. Birthday celebrations have always been a big affair whichever hospital I have been in, and here in St Andrew's is no different. I kind of make sense of this by the fact that it gives everyone a focus to look forward to; there is the feel good factor of contributing and a real sense of togetherness as we join as a sort of mini community. So for me, yesterday was joining in with a variety of party games whilst food was being prepared for us to sit together and enjoy a pizza night. Which is nice about these events is that the staff join in with us too, so there isn't that patient/staff divide that I have experienced at previous hospitals,
Now, today is the official birthday so I woke up my friend by playing "Happy Birthday" to her on my ukulele that I have been practicing all week! It is also a member of staff's birthday who I get on with really well and is on my team, so a few of us celebrated by going for a meal at a local restaurant this evening. It was really nice and I am now really full! A little nicety for me was the fact that we had candles which is normally a big no-no in hospitals. Sometimes it is easy to forget that the little things in life are the things that you actually value - and miss - the most. All in all it has been a lovely couple of days, both of the birthday girls have enjoyed themselves and I have noticed that when we come together as a ward doing something positive we have far less incidents, which is a good thing all-round.
I am going to rest nicely tonight before falling asleep,"
1 March, 2019
"Hello! so if you have read my introduction then you will know that I WelshStar and I am beginning a new blog from within St Andrew's Hospital, Northampton. This is a first for St Andrew's and a first for me. I hope that over time we can build that relationship between writer and reader that mutually benefits you guys and my mental health journey.
This is an exciting opportunity for me and I feel fortunate for the full support that St Andrew's have given me. I have a passion for writing (although make all sorts of judgements for not being great at it!) and I have an even bigger passion to help quash the stigma surrounding mental health.
I have not thought too much about exactly what my entries will include as there are never two days the same, but here are a few facts that you might like to know about me...
I am a 35-year-old female with a Personality Disorder diagnosis and I have been at St Andrew's for approximately 8 months. I enjoy the outdoors, being creative and the simplicity of learning. I have found that being in services can take a level of control away from you that has left me feeling powerless. Over the years I have been stripped of my possessions, my family and friends and the freedom of making my own choices. However, I discovered that my knowledge, what is inside my mind, can never be taken away. Understanding this gave me the freedom of my mind and a comfort with hope.
Already I have touched on parts of my life that I could really explore, but there is no rush and being in services definitely teaches you to be a "patient patient". Today I have had a good day and this weekend I will write some more. By the way, Happy St David's Day to all."