Since becoming an occupational therapy student I have found that professional use of social media can be a great source of information and experience. Reflecting on the warnings given to us in a lecture about social media use and the Royal College of Occupational Therapists Social Media Guidelines, I felt it would be a good idea to make some kind of disclaimer about how I intend to use the online space.
During my first year at university I began to feel like I had two lives- ‘OT life’ and ‘Art Life’. In my art life I create work about my experiences with disability and mental illness and hopefully make people feel less alone. My art life has been in place for many years. However in my OT life during my first year I aimed to be the polished professional, a concept not cohesive with my art life in the slightest. The polished professional is healthy, well, and on most topics very neutral. So I, a disabled woman actively campaigning and lobbying for policy change, felt like I may have made an error in my online presence. I ran through mentally if there was a way of finding a new pen name for my art life to siphon it away from the occupational therapy world, but six years down the line I think that ship I feel has long sailed. I thought about how I could ‘scrub the decks’, deleting more political or confronting content left right and centre. But trying to separate my two professions felt like trying to unravel matted wool, because in some sense they feed into each other really well- my experiences as a patient will no doubt will make me a better professional. But in having shared and continuing to share things about my health (mental and physical) online I have no doubt some people will think of me as unprofessional.
My interpretation is that having one self, with occupations that are deeply important to that identity, combined and owning our lived experience is central to the ethos of occupational therapy. Following this, my art life should be part of my being. On this site I have anecdotes dating back to 2014 from when I was a CAMHS inpatient, experiences dealing with mental health services, and living with disability and mental illness. I’ve been told over the years that these blogs have been useful for many people. I’d never shared anything that I wouldn’t want the public to know, I’m not ashamed in any way of these experiences and really don’t mind who knows these things about me. I rank it in the same class as people knowing my birthday. Due to developing a significantly better writing style over the years and the fact I had no idea I’d be a trainee healthcare professional when I wrote these blogs, I am reviewing them and editing where relevant. Many of these posts will return back to the site and I hope they will go on to help more people. I might even write more looking back on those days. I feel especially with the strength of hindsight these blogs demonstrate how things do change and things do get better eventually.
As a disabled woman it can be hard to hold my tongue at times when politics seems to do nothing than beat people like me down. The activist in me finds it incredibly hard to remain neutral as guidelines suggest. At the end of the day I will always stand up for the rights of disabled and vulnerable people, no matter who it is I am having to stand up against. I will celebrate successes and contest injustice, no matter what the political party is. In my mind, what kind of professional would I be if I didn’t?
So here’s a promise.
- I will never participate in (or tolerate) hate speech or discrimination towards any minority group.
- I will always stand up and fight for the rights of vulnerable people.
- I will, to the best of my ability, share the most accurate and current information possible.
- When posting about my own mental health I will never publish anything that will make people concerned for my immediate safety.
- I will never identify service users online or break any confidentiality agreements relating to them online. I will also only identify colleagues with their specific permission to do so.
- If I make a mistake I will apologise wholeheartedly and do my best to put it right.
I realise this may seem a very odd post, but I feel if I have this written out I am making clear my expectations of myself and what others can expect of me. If any of this is contrary to guidance or unwise I would appreciate input on this from colleagues.
Today I turn twenty. Most people will celebrate their 21st birthday as the major milestone, but I’m partying today. Well when I say ‘Partying’… I’m drinking tea and feeling grateful. Partying.
To put it bluntly: I’m here. My teenage years are over and I made it. I got through. I did it.
This may sound over dramatic, but there were many times where it really was a close call. It’s hard to look back, but I am proud of myself now, really bloomin’ proud. Ten year old me wouldn’t have been able to dream up all the things I am doing at the moment. I hit rock bottom, yes, but the only way to go from there is up. I live in fear that the lowest of low will return one day and I won’t be so lucky, but hitting the bottom of the pit turned out to be a catalyst for change.
I feel such relief. Relief that I wasn’t allowed to just die. I am so grateful to those who brushed the dirt from my face, inspired me and believed my life would change. They dreamed of what my life could be like when I couldn’t dream it for myself. They encouraged me no matter how many times I screamed at them to give up. I can’t thank these people enough. You saved me.
I don’t think anyone could call me mentally well, but it’s not terminal. My illnesses aren’t going to kill me anymore- with the help of a whole lot of medication.
The day I am editing this (may the 12th) is international nursing day. So from the bottom of my heart thank you to those nurses who gave friendliness along with professionalism. For the hours I’ve had them by my side and for the hours I’ve cried on their shoulders. I’ve met nurses who are unshakable: They can handle any combination of crises and chaos. They are rushed off their feet on busy wards but still pop in to check that you are okay. The best nurses I know give more than just medication, they give genuine love and care to patients.
New year is difficult. You feel the pressure and exhilaration of trying to make this ‘your year’. If you have OCD this can become a compulsion. All year long I promise myself that I would do better on a huge array of things. Some people call it determination, I wouldn’t say that. It is constant feelings of disappointment and perfectionism and it is intensified by the season.
For example last summer I received my AS level results. I opened the envelope and was relieved that I had done well in two exams but received a ‘U’ in my other subject’s main paper. A ‘U’ is actually worse than a fail, and as I had received pretty respectable grades in mock exams despite being poorly I had no idea how I’d managed to get such a low grade. Had I gone into an episode during the exam? Somebody would have definitely noticed. Anyway, I went home in tears and used a drawing pin to attach the piece of paper to the side of my wardrobe. The purpose of this was to ‘make me work harder’. I knew deep down that I had worked hard anyway and that the grade was unusual for me, but I accepted and internalised that it was because I was rubbish.
A week or so later my tutor ordered my exam back to see how I’d got it so terribly wrong. She opened the paper and found that three quarters of it were missing. The exam board had lost all but one of my questions before marking and I was given a U. It wasn’t my grade after all and so it got corrected, however the piece of paper is still nailed onto my wardrobe. I must be a glutton for self torture.
The same thing haunts me with coursework. It takes ages as I read it again and again irrationally fearing it contains a murder confession or expletives, I can never hand it in because there is always something in my mind that I need to add or do to make it ‘better’. I set a lot of resolutions this new year, most of which talked about improving on 2016. What I didn’t think about when writing them into the front of my journal was that last year wasn’t a bad year. I wasn’t locked in a ward and there was no major traumas. It was pretty alright by previous years’ standards. By desperately trying to improve too much, mostly on things I can’t change, I will likely send myself back into oblivion and that would not make 2017 good at all.
This is a rambly post because my head made the first post of the year into a big deal, when actually it shouldn’t be. What I’m trying to say is:
Just try not to have a worse year than the one before and do what you love. That’s enough.
Two years ago I was in the back of an ambulance.
I waited in A&E for my turn.
I got out 369 days later.
It was a bloody long turn.
In the first six months I learned:
They could restrain me,
They could drug me,
They could detain me,
But I would survive.
I could survive:
Being forced to eat,
and my heart would still beat.
After the tyranny freedom was elected.
I was no longer an animal- held down and injected.
I found that words made me lighter,
Each time I said or read them I shone a little brighter.
My talents lay in living and not dying
and every step forward is a person I’m defying.
Once it is broken the glass does not fear the floor.
Tell me I shan’t.
Tell me I can’t.
I’ve heard them all before.
As I move from the care home to an adult fostering placement I cross an invisible boundary between mental health services. Moving across borders within the NHS is somewhat like going on a pilgrimage for treatment. Before you go you are promised that things are brighter on the other side: more resources, more funding and more staff. My voyage -from an area which didn’t have a pot to put pessimism in as far as mental health services are concerned- was tough. The new team didn’t pick my case up for over a month. The team I had moved from, clearly glad to see the back of me, didn’t send any notes over at all. They probably burnt them all in a bonfire to celebrate my departure. Frustratingly this means I haven’t received the findings from the psychological assessment which I waited six months to complete. Three hours of shaking and crying and no one seems to have bothered writing it up. Ho hum.
One thing I have discovered about moving is that community teams like to do their own thing. They trust their psychologists and their psychiatrists, so even if you come brandishing a 100 page assessment they will likely still want to conduct their own. I’m in a bigger team now, so thankfully the waiting times are shorter. I’ve also, for the first time since leaving CAMHS nearly a year ago, been granted a community psychiatric nurse- something that a staffing crisis caused short supply of in my original county.
So I have a community psychiatric nurse, or CPN. A CPN’s job is to work with you towards recovery or towards getting some form of therapy. They know about medications and, hopefully, all the symptoms you experience. They are generally very useful people to have on your side.
When… Let’s call her *Sue… Turned up she had no knowledge of my background. No transfer notes and no discharge summaries- she didn’t even know that I had been out of CAMHS inpatient services for over six months. Nevertheless I was very glad to see her, with visits every fortnight and her specialism in mental health rather than social work she is the first mental health professional I’ve had regular appointments with since inpatient.
Being in a bigger NHS trust certainly has it’s benefits as there are more support groups and, though still not many, a lot more resources. Coming out of the first meeting with Sue I had a psychiatry and psychology referral- something which took an age to get in my old trust. Over the last few weeks I have been trying to get to know her as my CPN and tentatively hoping that the support won’t fall to pieces beneath me- a process I am too familiar with. In this scenario I appear to have benefited from the postcode lottery.
I left home when I was 16, I became homeless and started sofa surfing at 17, then I was in hospital until I was 18. Now I finally have a home just before my 19th birthday.
Since the start of my desperate search for accommodation I have wanted to live in a family. Residential care is so rigid and clinical and never felt ‘normal’ to me in the slightest. Communicating with a large care team hurt my head and I was living with people who had completely different needs to me. As a result I chose to look into a ‘shared lives’ system, which is in effect fostering for adults. People who need care and support are matched with families who can give it. It takes people out of care home settings and is a much more informal way of receiving care. I am now living with a family in another county, using two 24hr carers instead of 10+ rotating staff.
“There’s a family interested! Can I send over your care plans?” Is where it all started way back in February.
‘Ha. I won’t be hearing from them again!’ I thought as I reluctantly gave file sharing consent to my social worker. I’ve read my care plans. They are not pretty and I certainly wouldn’t want me in my otherwise very nice life after reading them. But this particular family gave the green light for me and my world to merge with theirs. I went to stay with them for a few days and popped in for many, many, cups of tea. Then a week ago I moved in for good.
Getting used to the more relaxed care is a challenge but so far I’m loving it. The move seems to have been nothing but positive.
Of course I had to consider health care and my furry family before moving. I finished work with *Esther on the day I left, she told me a referral is in for me to be picked up by the nearest Community Mental Health Team. I’m really hoping this CMHT can offer more support than *Esther’s team could. Noodle and Mél the hamster are exceedingly happy in our new house, even if Noodle is still a little alarmed when she sees an over excited two year old hurtling towards her! Mél has the comfort of remaining in her own house of course, though she does venture around the living room after the tiny human’s bedtime.
So… I think we’ve finally got ourselves a home.
In French there is a saying: “le mieux est l’ennemi du bien”. Translation: The best is the enemy of the good. I can’t think of a phrase more truthful about mental health recovery.
The best is doing everything. In my head this is running around; getting top notch A Levels, spontaneously producing poetry and blog posts, finding somewhere great to live, learning more languages, pointing my finger at the government on Twitter and… Being healthy I guess. But if I’m honest my ideal doesn’t specifically contain being recovered. It’s just a fact that in order to achieve these things I would have to be. I haven’t achieved this basic requirement but I’m still going for it full throttle. Day in, day out I’m turning up to the tracks wearing pizza boxes on my feet and hoping to be Usain Bolt. I’m tripping and falling and generally being stupid because, the truth is, recovery is a load of balls!
You have to, like everyone else, juggle like crazy to catch all the things life throws at you. You didn’t learn to juggle properly so, inevitably and without warning, you lose control. You drop everything and have to start again.
The bit I need to get my head around is that no one learns to juggle with eight balls. They start with one and work their way up, dropping odd ones on the way but eventually getting into the rythmn of life. Of course you can stop juggling and put them all down: but that is your decision. You’re being strategic and stopping for a break before everything crashes down. After you’ve rested, eaten a few cheesy snacks and gulped a cup of tea you can start juggling again. Crisis averted.
I apologise for the long analogy. But recovery is a load of balls and I have to learn to juggle one way or another. It’s just deciding what takes priority. By trying to get the best am I missing what would actually be really, really good for me?
After the saga that was my ‘peer mentoring’ (dis)appointment I didn’t do too great. On the day I posted my blog I ended up being semi-dragged into the walk in at the Community Mental Health Team office. I expected the worst, “WHY ARE YOU WASTING OUR TIME?!”, and all the other phrases I have become accustomed to.
But it didn’t come. I took one of my support workers and just talked for a bit. I expressed my concerns about having a care co-ordinator who is under the illusion that I am just a disobediant child and how everything felt very hopeless. It was the CPN from the previous meeting and she listened carefully and said she would take it to the Multi Disciplinary Team again the following day.
My phone eventually rang mid afternoon on Friday. I was told that a change of Care Co-Ordinator had been granted and my CCO was now the CPN I had seen as a walk-in. I was over the moon, this CPN had understood me so much better. I cried with relief.
My first appointment with… (time to think of a pseudonym)… Esther… was this afternoon and it went really well. We played the facade of ‘who sits where’ that always comes with a patient and worker entering one of those small white room for the first time; our positions yet to be molded by therapeutic routine. I took the high backed seat nearest the door and hoped dearly that my choice wouldn’t be psycho-analysed. We talked about my moods and how they are erratic and the ‘base work’ that needs to be done whilst I am on the enormous waiting list for therapy. Things like emotional understanding, trigger recognition, crisis prevention and so on. Generally the aim is that I will feel better for a bit before therapy churns everything up again but I should be able to deal with it. We didn’t pick up anything heavy other than the very background details of my trauma. Esther noted down a few of my questions so that she can ask the psychology team. She also reiterated that she will be having supervision from the psychologists following our sessions to make sure she is doing the right things to help me. Again with the complex case stuff: cringe.
It might be my ‘exaggerated moods’ but I feel super happy. Like everything is going to turn out fine. The lions den wasn’t as scary as I feared. The lion has been replaced by Esther the domesticated moggy!
For the last eighteen months I have been homeless. I have never slept on the street, I don’t do drugs (except my prescription ones of course) and I don’t drink. These are stereotypes people jump to when they think of a homeless person. But did you know that ‘homeless’ means literally without a home? Not house– home. There is a big difference between the two: a home is a space that you have some kind of control over and it is somewhere permanently there for you for as long as you need it. There are thousands of homeless people in the UK that do not sleep on the streets. They sleep on sofas, hostels, B&Bs and maybe even hospitals.
For the last eighteen months now that has been me. Sleeping on friend’s sofas and hostels. Anywhere that would have me. I didn’t have any other option and it was one of the most unstable times of my life. It’s no great surprise that it lead to me being hospitalised.
For the past year of that time I have been in CAMHS psychiatric units. I came when I was seventeen and I am now eighteen and three months. I shouldn’t be here. I was formally discharged from the unit in march but I had nowhere to go. Duty of care means that the hospital cannot chuck me, blind and severely mentally ill, onto the street with only my guide dog for support. It would look really bad on their part. But with family members ruled out for many reasons by professionals what could be done? Children’s social services had refused point blank to help me. Insisting that despite professionals seeing safeguarding issues I could still return to family. They felt that I was making myself homeless. If only.
On my eighteenth birthday adult social services got involved. They tried to help me and at first it looked promising. But the longer I was in hospital and in the horrible predicament of having nowhere to live my mental health deteriorated. It was an urgent case and the social worker I had been assigned only managed to see me twice and made little or no progress in finding me accommodation. Eventually I was referred to a team in social services that deal with complex cases, often people with multiple disabilities like myself. I was very lucky to get a fantastic social worker this time and within a week he had found me some very promising looking accommodation options.
Yesterday I was given the news that I had been given funding to go to one of these places. After being in hospital for nearly a year I now have a way out. Things now look a lot more positive. I have been given a chance at having a safe and stable place to live. At long last. I haven’t written about my situation with homelessness before because I have been gagged by services. There were just too many ‘ifs’ ‘buts’ and ‘maybes’ for me to write anything coherent. All anyone could see was red tape and no one could seem to be able to cut me free of it. Four psychiatrists, five social workers and many mental health professionals later we’ve got some sort of movement.
I cannot be the only person in the UK that this has happened to. No one should have nowhere to go, especially not children or vulnerable adults. One of the main problems I faced was that because I was in hospital, or staying with friends, or anywhere but on the street I was deemed as ‘safe’ by social care and not a priority for support. I was in hospital so could not claim benefits due to not having a permanent address and to live outside of tier four care I need everyday support. The problems seemed to just multiply like maggots.
There is something going seriously wrong with the system. However, I’m getting out of hospital on Monday! It is going to be terrifying but rewarding and I’m ready for the next chapter.