Behind The Scenes

The 25th October marks 1 year since I was discharged from a traumatic placement in an inappropriate mental health facility with no clear plan of action. I was very unwell, unable to work and was launched out into my already most difficult part of the year with no clue where I would go or how I would survive. I didn’t think I could survive. But I am still here, it’s not OK and it’s not plain sailing but I survived.

As I was discharged I was told funding had been secured for 16 hours a day of support from personal assistants to live in my own home (sounds like a lot but it’s not when you consider the fact most of that is used overnight and due to my PTSD I cannot access my house without support from another human). But we had no idea how that was going to be used, where the support would come from, how to release the funding…anything. I had rented a house as I was told to do. But I couldn’t live in it. It would be 4 months until I was able to move in – during that time I lost all my savings paying rent and bills on a house I couldn’t live in – my salary doesn’t cover my rent and bills each month and if I am on sick pay I am nowhere near.

For 6 weeks or so, after a couple of days at crisis house and away in Switzerland avoiding bonfire night, my friends and family desperately tried to support me living in my home. I spend some time on the psychiatric decisions unit and the staff were great but it is a glorified waiting room with no beds and not suitable for the overnight stays I was having. I was still so unwell I couldn’t go out alone and the pressure was too much for me and for them. I was in a constant state of crisis and that would regularly be pushed out into the public domain. I had a particularly difficult situation where I was sectioned by the police on a tram and it was covered in the local newspaper. Although I was anonymous in the article, reading the judgemental comments people made was really painful.

It eventually all came to a head. I had tried repeatedly to ask for help from the mental health team and had been turned away. I had asked that morning, and the police and the skatepark and friends asked on my behalf. It was the end of November. Freezing cold. I remember being surprised at seeing Christmas lights up as it was so far from the reality of my world. I didn’t know where to go. I felt like such a burden to everyone. I don’t want to go into details but I was encouraged down from the edge of Manchester Airport carpark by the only friend I would have been able to pick up the (video) call from in that state. Alerted by my friends back in Sheffield who had become concerned and started a search. I was taken by police to be assessed at Manchester royal infirmary and then transferred back to Sheffield. I then spent the 3 weeks leading up to Sheffield living in a waiting room on the psychiatric decisions unit. I had no bed or privacy but the staff tried their best to support me.

A couple of days before Christmas I was given a reprieve. 6 weeks at Crisis House – a warm, homely environment with staff who I was familiar with. This was a totally out of the box decision as Crisis House is usually only a maximum of 5 days. During this 6 weeks I went from not being able to go out alone, to being able to travel to another city alone. I went from 4 months off work to working all my hours again. We went from no idea about how to go forward with support at home to having recruited a full team of PAs. I moved into my house at the beginning of February feeling much stronger and more optimistic that finally I would be able to move forwards, work on the psychological stuff I needed to and live in the community.

Unfortunately it has not been that straight forward. I have not received psychological input, nor is there a plan for that. There were initially issues with the PAs and management of the care package (now, thanks to a fab new team that is easier to manage). It was very hard having to be out of the house all day every day. And then COVID came.

The world wasn’t ready for this, and only 6 weeks into the care package – neither were we. I suddenly found myself with nowhere to go in the day with everywhere closed and friends not able to come round. Some fab friends put me up for a while when most of the PAs refused to work but I found myself working 2.5 extra days a week because it was the only place inside that I could legally be. I didn’t have the weekends to rest. It was hard and it was lonely – everyone else was locked up but I was locked out and not many knew how that felt. I found myself wandering a silent city, sleeping rough at times and still dragging myself to work the next day. Things were dark and I couldn’t see a way out. Every solution seemed to be blocked, and with little mental health support I had 2 very serious suicide attempts within a month – both which required admission to resus and have had lasting physical effects. I didn’t get the luxury of having time to rest and recover physically or mentally. I couldn’t take annual leave as I had nowhere to go. So I kept on going. 36 hours after being in resus I was back at work pretending everything was normal.

The year hasn’t been a total write off though. I have become a lot more independent. Cooking, which is something I struggle with hugely has improved greatly with the help of the PAs. When we were starting to be allowed to meet more people I loved getting back into skating again, initially in the street and then in skatepark again. I’ve made new friends and rekindled old friendships. At work I feel so much more confident – lockdown has meant I actually had more opportunity to take the lead on projects and I feel I’ve learnt more skills and made new connections. I’ve got into gardening and turned my minging yard into a beautiful yarden. I’ve got my two little ratty boys Enrique and George who make me smile every day. After a few staff changes, my PA team now are great, they know me, they work together to get the best out of what we have. It’s frustrating for them – with no guidance, training or supervision when things get hard. It’s frustrating for me, feeling like I’m trying my best but getting nowhere. I still only get one daytime at home per week and it’s exhausting. I’m responsible for management of the PAs – rotas, timesheets, communication etc. And that’s tiring on top of everything else and such limited time at home. But they try to make life as easy as they can for me by being flexible and agreeable.

So we find ourselves a year on. My challenging time of year is still challenging – and this year I can’t escape to another country so I have to face it head on. I’m struggling – my nights involve nightmares, flashbacks and going missing so I get very little sleep and occasionally will have walked a long way in the night. But still I leave the house at 8am every day and can’t return until the evening. Friends are helping where they can – I’ll be honest, sometimes we have to break the COVID rules – they are not sustainable for someone like me. My PAs are being supported by an external person providing supervision pro bono and I’m so grateful for that because I don’t know where we’d be otherwise. I’m scared because I’m getting unwell and I don’t have the luxury of doing what I need to to make myself feel safe. I’m scared because the funding will run out soon and as far as I’m aware that’s it, I will not be able to access my house at all again and that’s scary.

I try to live my best day to day – seeming like a normal member of society. Turning up to work, being proactive there and taking on new things. Helping support the skate scene in Sheffield and Yorkshire. Seeing friends and supporting friends where I’m able. But behind the scenes there is so much going on and so much uncertainty looming around over my head. I’d give anything for just the constant knowledge that a safe place would always be there.

I’m still here. And I’m not planning on going anywhere. I’ve survived worse.

A Recipe For Good Care

As a service user you become expert in a variety of skills – some useful in very specific scenarios (quickest time to commandeer a real plastic mug after admission to a psychiatric ward) and some more useful in every day life (which combination of buttons to press on the council’s benefits telephone system so you actually get to speak to a real person every time). But you also become an expert in what constitutes good and bad care.

I can spot good care. I can spot bad care. I can spot bad care where the people are trying their best to get it right but just got it a bit wrong. I can spot where people are trying to give good care but the system is getting in the way. I can spot when I’m being cajoled into thinking I’m receiving good care to cover up the reality of bad care. And a majority of other service users I know will also be able to give you this information about any service/professional/appointment they have encountered. We may come with messy coatings but inside our interiors are sharp and on the ball. If you honestly want to know how your service is working – listen to your service users. We know our stuff.

I think there is a bit of a presumption that all we do is rant about bad care/are never satisfied/always want more etc. etc. But I can 100% confirm to you that when I receive good care – I literally want to shout it from the rooftops and tell my grandma’s ex-neighbour’s niece’s dog about it. And invariably, the things that make me feel I am receiving good care do not involve a degree in rocket science – but just a simple understanding of humans, a non-judgemental approach and often a bit of banter on the side.

I want to tell you about a recent very positive experience of care I received. Because it was outstanding. Nothing ground-breaking was needed to provide this care. The people providing it were just human, communicated well with each other and with myself, and respected me as a person and my knowledge of myself. None of these people were specially trained in mental health. This experience was in a general hospital – in a ward that doesn’t get many mental health patients through its doors. Which just goes to show its not books, letters after your name or years in study that facilitates people to give good mental health care – it is simple compassion and open-mindedness.

The ward in question is a ward that has dealt with me a fair amount over the last two years or so. I end up there because of something connected to my mental health. Specifically something that is triggered by past (and sometimes current) trauma, so I’m invariably not the happiest bunny when I’m there. My mental health is complex, especially in certain environments and I acknowledge I can be a challenging patient to have on a ward. This ward was no different in experiencing the challenges of Ellie, but they were very different with their response to it. Since my first visit there, this ward has become the only ward in that hospital to send staff on our mental health training for teaching hospitals staff. They weren’t obliged to do this, but they did. And that’s important.

My recent experience on this ward came 9 months since my previous visit – something that upon arrival, the staff immediately congratulated me on and commented at the obvious (positive) difference in my mental state since last time. This not only made me feel less like I’d failed and let everyone down, but made me realise that although I had slipped up, I still was making progress.

I waited for the doctor to arrive and when she came she had come prepared with my folder, which had notes and recommendations from my previous visits and what had happened and what helped. She had also spoken to other staff about this and exclaimed that she remembered me before and it was nice to have a proper conversation with me. I was sat on the floor in a bay by myself, the floor feels safest for me, particularly if my back is up against a wall. She came and sat down next to me. Note, not in front of me – blocking my exit – but next to me, indicating that she was willing to go on this journey beside me. We sat and talked for a while before attempting the procedure I needed. She spoke about how I presented last time, asked me what helped? Did I want anyone there with me? How would she know when I was too distressed? How did we want to proceed with this? Was the best place to do it in the treatment room or would it feel safer where we were? We decided that it would be easier on the floor, I played my grounding playlist which she commented on and sang along to, and I was allowed to get my pink toy bunny out. In the meantime a nursing associate who had built up a good rapport with me in the past came and as a three we discussed how this might pan out and how things were at the moment.

I tend to get very distressed when this particular procedure is undertaken. And one of the first things is I will become mute and unable to communicate verbally. This didn’t phase any of the staff and they carried on talking to me like I was a human being. We did struggle with me tolerating the procedure. But I was assured that even if we did little bits with a 5 minute gap in between each try, if that was how I preferred to get it done then they could stay as long as it needed. She didn’t push me too far into distress each time and recognised when enough was enough. Eventually it was apparent that we would need to get it done under general anaesthesia – which is not ideal but was necessary in this situation.

The anaesthetist came up to join us, and again – wasn’t bothered by my inability to speak but addressed me directly and waited as I responded by typing on my phone. The staff bantered gently around me, picking up on things they knew I found interesting/funny – such as falling at roller skating or working in the NHS as we discussed the best course of action. Because of a combination of my complicated home situation, not particularly being very calm at night in hospital and a need to get the procedure done sooner rather than later – we came up with a plan that would involve me going home that night and coming back in the day for surgery tomorrow. The nursing associate advocated for some of my needs that she was aware about. I taken through the operating room procedure and differences due to COVID. Again, I was asked what would help – including that I would be the one to hold the mask to my face to put me to sleep. I was taken home and had a night in my own bed to prepare.

The next day I was kept up to date with what was happening with the surgery list – the staff made sure that even if they didn’t know what was happening, they came to let me know that – instead of leaving me to worry and wonder.

When I was taken down to theatre, the staff understood my difficulty wearing a face mask and allowed me to use my pink bunny toy to shield my face (he also smells of parma violets and this helps me stay grounded). They bantered about the colour of my hair, the name of my toy (pink bunny), and debated the colour of the toy (the anaesthetist thought he was purple which was slightly disconcerting). The anaesthetist was different to the one the day before but he, and the other staff were aware of what my specific issues were and how to help them. One of the nurses explained that she wouldn’t be allowed to stay in the room during the intubation process because of COVID restrictions but she would take care of pink bunny. Normally I would lose my speech before even going down to theatre but this time I managed to stay speaking up until getting onto the operating table – which says a hell of a lot about the efforts of the staff to keep me calm.

When I came round, I experienced my usual distress of not realising where I was. But even this was less than before. One, the nurses reintroduced themselves from before, told me I was safe and where I was. Two, they were waiting with extra blankets which calms me down. Three, they recognised that getting me back up to the more familiar ward environment sooner rather than later was important and lastly, but by no means least – when I came round, pink bunny was in my arms – and on his leg he had his very own hospital name band. In a weird way, the fact that someone cared for my soft toy was even more important than them caring for me!

It just goes to show, that its the simple things that really help. No-one wants to be in hospital – and i can definitely think of plenty of other ways I’d prefer to spend two days of my life, but it was considerably less difficult and traumatic than it could have been and I left feeling like a valuable human being, who hadn’t messed up big time, but who was on a journey with ups and downs and by sharing that journey with others was able to help them learn for the next person.

So if you find yourself wondering how on earth you can provide good care. Just think back to the basics.

So to conclude, a recipe for good care:

  • Set your mode to “human”
  • Line with common sense.
  • Two cups of good communication.
  • A pinch of openness.
  • A generous glug of compassion.
  • Careful siphon off any excess judgements
  • Mix together with knowledge of your service user as a person.
  • Serve with a side of banter if required

Tongue-tied – what it is like to experience mutism

I received a lot of positive feedback on my first blog post – thanks to all those that read it and people that have given me feedback. I hope it continues to be something interesting and informative.

I have a couple of ideas of topics to cover in my next few posts and the order is probably going to be quite arbitrary and more to do with if I feel up to being able to write about a particular subject at a time. But the topic I’m going to be writing about here is one that is almost the polar opposite to the subject of my first post – and that is NOT talking.

People who know me well (or even those that don’t know me well at all) know I’m a bit of a conversationalist. I’m easily bored and not a huge fan of my own time and having stimulating conversations and debates with others is really important to me. It’s also kind of necessary to do a lot of talking in my job – especially the teaching and training parts. But what people don’t always know when they first meet me (or indeed if they met me many years ago) is that at times I am entirely unable to speak. It’s not something that I tend to open first encounters with – my mutism usually catches people off guard the first time they experience it.

This is not that I don’t want to speak, that I’m shy or have not got anything to say (I ALWAYS have something to say) or that I am being rude – it is that I am physically unable to undertake the process of speaking. For me it is a physical sensation – literally as if my tongue has been glued to the roof of my mouth. I can be doing something totally alone and not happening to be speaking to anyone and I will suddenly realise that I no longer have the power of speech. 9 times out of 10 it will have been preceded by some sort of factor that creates a lot of anxiety for me – usually but not exclusively to do with PTSD – but it can also occur when I’m overly anxious or overwhelmed generally. Sometimes I can’t quite pinpoint the reason for it but I do know that the more anxiety-provoking situations I am in in a day the higher the likelihood of me losing my voice for a significant amount of time.

I am not CHOOSING not to speak – it’s really important people know that. It’s that I CAN’T speak. But I would really like to…it makes my life easier!

Looking back I think I’ve actually had some sort of mutism forming for years – but was something that used to only occur during periods of dissociation (which I didn’t realise until a couple of years ago was what I was experiencing (and indeed claimed I didn’t dissociate for quite a number of years but it’s kind of hard to avoid now as it does affect me on a daily basis)) but has grown in the past couple of years to something that can sometimes last up to a couple of days. The more complicated and traumatic situations I find myself in and the less empowered I feel over my life the more the mutism grows. I don’t know much about mutism in adults – it’s not all that common compared to in children but it is often linked to trauma unless there is a root in some sort of Autistic spectrum disorder. I suspect it may stem back to my general need to be in control – but it doesn’t really make sense because being mute really does mean you have a lot less control on the things around you!

When I lose my speech I feel embarrassed. I feel frustrated. I feel like people must be judging me and thinking I’m rude or disinterested. I am trapped usually with a lot of stuff I need to talk about but no way of getting it out. Yes, most of the time (though not always) I can type or write – but conversations this way are difficult and often taken wrongly not to mention how long they take! I put a lot of pressure on myself to “just man up and speak” but this only makes the situation worse. Sometimes I can be very distressed and mute and may be struggling cognitively to even process what is going on around me. Or sometimes I can go about my day perfectly normally but silently – when I’m like this I can hold conversations, I can joke and laugh and do team activities, I can travel about…but all in absolute silence. Friends have observed how bizarre it is when I find something funny and collapse into silent giggles but equally how weird it is to see someone crying hysterically but totally silently. (Though on certain levels of PTSD-trigger occasions I do make a noise but it’s more like a roar than any noise a human would normally make).

Not speaking gets in the way of a hell of a lot of life things. I often can’t call for help when I’m distress. I quite regularly have to cancel meetings etc. because there is no point me going. Yes, I can be on the edge of social situations though it’s difficult to really get involved without speaking – a lot of my good friends are very good with trying to include me or being patient waiting for me to type a note on my phone to be read out to the group. It makes it really complicated to get out of stressful situations without being able to properly explain. I also find that depending on the situation, people can treat me very differently to how they would treat me if they met me speaking. I regularly have people thinking I’m deaf and going to Oscar-winning lengths to perform whatever it is that they’re trying to communicate with me – which has given me an insight into how it must be like for someone who is actually deaf. People often treat me like a child – talking in a very patronising way to me (to be fair I do look about 16 on a good day and if you add crying and optional roller skates into the picture that brings it right down to at least 12!) The best scenario is when someone treats me just the same as they would if I was talking – just with a little more patience and time to accommodate for the conversation.

My speech can sometimes be gone for a couple of minutes or sometimes it can be gone for a couple of days. Or sometimes it struggles to return fully throughout a day. When I do start getting my speech back often my first words are more like indistinct noises and I can struggle to speak clearly for quite a while. Thinking and forming words is a really brain-heavy process and it takes some effort I can assure you! I can also sometimes experience my voice starting to disappear- I will still be able to speak and people who don’t know me well probably wouldn’t notice the slight drop in fluency and eloquence but people who know me well will often pick up that I’m not at full capacity.

So if you come across me and I don’t acknowledge you. Or I don’t seem my usual self and don’t contribute to conversation or cancel a meeting or a talk or something – don’t take it personally, it’s not me being lazy, unreliable or unfriendly – my voice might have just gone walkabouts and I’m working my hardest to get it to come back! Treat me like you normally would and just give a little more time.

Sharing the story

So the title of this post is probably a bit misleading – I’m not going to be sharing the whole of my story – for starters you would need 31 years and 51 weeks to understand it fully and I also don’t want to be that person who walks into a party and starts up a conversation going into mega detail about the pain in their leg they’ve been having for a couple of weeks. I’ve had a pain in my head for pretty much a whole lifetime but it’s not the only aspect of me – so this blog will talk about other life experiences as well as those related to my mental health. I am lucky to have had a very varied and wide range of experiences in my life – some hilarious, some traumatic, some close to home, some thousands of miles away- and they all shape who I am today. But I’m more going to be talking about the process behind sharing my story.

I’ve often been told “you should write a book” “you should write a blog” and everything in between. To put it quite bluntly I’m too busy doing life to sit down and write a book but if someone comes up with a technology where you can just scan your memories into a computer and it’ll write a book for you I’d happily comply. But a blog seems a reasonable compromise. And I’m not sure what it’s purpose is but the more I am learning to share my experiences (and it is literally my job now to do so) the more I’m realising that my story is potentially an important one to tell. I come across a lot of people who “don’t expect those sorts of things to happen to someone like you” or who say “I would never have known you go through all that – you look so normal” (if anyone would like to draw me a picture of what “normal” looks like please feel free to send me mail!) I think what they mean is that I don’t shuffle around muttering to myself, I am capable of eloquent conversation (most of the time), I have done a lot of things in my life, I am willing to engage with treatment (that has not always been the case), I do have have job, I do have hobbies and interests and I’m not locked up in a padded cell – on a good day – apart from some visible scarring, I can show no outward signs of mental illness. Yet every minute of every day I’m battling barriers that would make most people curl up in a ball and never leave their beds. “But it’s ok for you – you’re determined and motivated and strong”or “I couldn’t do what you do – I don’t know how you do it” … kind words and I understand the sentiment – but I think sometimes people think I have some superhuman powers of coping that other people don’t have. That, to be totally blunt, totally belittles the effort I have to put in to keep myself going every day. I’m not special at all and I wake up every single morning, slightly dissociated and confused and when I ground myself I want to die. Because that’s how I’ve always known waking up to feel like…wanting to die. Exhaustion at the idea that I’ve got to battle through yet another day. But the difference now compared to a few years ago is that (usually – and this does wibble slightly) within a couple of minutes I remember the novelty that I do have a life, I do have plans, I do have a job to go for, I do have friends and happiness does exist. So I haul myself out of bed and face that day because positive memories can’t be made lying in bed.

It is possible to live with severe mental illness and lead a fulfilling life – yes it might be rather more complicated, frustrating, less in your control and certainly more effort than your average person “doing life stuff”. But it is possible. I have the odd situation of being a service user (and one of those irritating ones that gets labelled as “complex case” (I’ll talk about my feelings about that in another blog) and is quite stuck in the system) and an employee in the same mental health trust. I am also someone who needs to be in a pretty significant level of 24/7 support but I can also hold down a job. My disability doesn’t define my ability and my ability doesn’t define my disability. People get very narrow minded that because I can work and travel across the world and put my pants on the right way round (though FYI last Wednesday this wasn’t the case) that therefore I must be able to cope with everything else and I spent years trying to get services to understand this. I’m all for a positive spin on things but solely concentrating on the fact that I’ve got a really good set of hobbies and friends and totally ignoring the fact that I’m incapable of entering and moving around a building independently or making a hot meal for myself or sometimes getting myself to the corner shop – isn’t going to help me move forwards in life. It has taken me a long time to accept that “both can be true” (a good old’ DBT dialectic) but I still think a lot of professionals have a long way to come to truly understand that this can be the case for a lot of people.

Hence why it’s important to talk. It took me YEARS to learn to talk. Diagnosed in 2005 with an eating disorder I took years to actually admit to anyone there was a problem (despite not doing well at my A- levels, having to take two gap years and being chucked out of uni and a job because of my illness) – I was an expert in denial and “yeah but” was my favourite response to challenges. I think in 2012 I started to realise maybe something was wrong (by this point I was in day treatment for eating disorders but couldn’t shake off the feeling of being a fraud so wouldn’t really open up to anyone) and then after a pretty disastrous 2013 I finally accepted something wasn’t right and would start to open up in private sessions with professionals. At some point at the tail end of 2014 I made a decision to start to stop hiding my mental illness (by this point I had been in day treatment for eating disorders 3 times, was in an acute psychiatric ward and had been hospitalised several times for overdoses). Prior to this I had always covered my tracks with most people except those that really needed to know. I started to let people know and far from being rejected by all and sundry I found that the response was surprisingly positive. I continued to struggle with actually opening up about what was going on for me but I did speak out arbitrarily about mental illness and didn’t hide that I suffered but it wasn’t until I was admitted to a year long specialist admission in York that I actually learnt to talk about what was happening. And that was a huge turning point. It didn’t miraculously make me recover or improve services but it did help me start to unpick and understand what on earth was going on in that grey matter of mine – and although I am still in a very complex point in my life – this ability to speak and articulate more about what is going on is going to eventually get me closer to where I need to be.

I’m also fortunate enough to have a job role where I don’t have to hide my mental illness…in fact so far from the truth because having experience of mental illness is in the job description for my role. And that’s a complicated dynamic – and one that takes practice and I’m still learning to perfect. But how honoured am I to have the opportunity to be in a position where sharing my experiences can genuinely influence others – people recovering themselves, professionals and how they practice, and maybe…just maybe…even have some influence on how services are run. Speaking out is the most important and scary step I’ve ever taken, but it’s worth it – for myself and for other people.