“Dear Tutors: You’ve probably noticed by now that I don’t make it into college all the time, and I wanted to explain a few things to you…”
This is how an email to my tutors began a week ago. I didn’t really know what to say, other than that I really am, honestly, trying my best. It occurred to me that it is hard for people to understand what it is like to go through the many, many, cycles of mental illness. Someone can seem like they are falling apart or they can be jumping around with joy, but in both situations they can be just as ill. Looking through my mood calendar (cheers occupational therapy) I have pieced together the last four weeks. I have no real agenda for this post but I wanted to show what it is like to live day to day with this kind of illness and how it can morph and change.
Week One- A&E and for God’s sake leave me be…
I was doing okay as sometimes I do, bumbling through. When I found myself in A&E again. Circumstances quite similar to the time before and the time before that took me there- spending a whopping £60 in taxis for the merry outing. I was in an uncontrollable panic for no apparent reason and like before one of the less helpful voice’s ‘solution’ was to get me to whack my head as hard and as often as I could against the wall. Not a good idea. It turns out that disassociation and panic attacks cause very similar symptoms to head trauma. Throw in the fact that I couldn’t explain what I felt because I wasn’t in my body and… 111 booked me in to A&E. The doctor took one look at me- trying to do breathing exercises and stop my muscles cramping- and told me it was hyperventilation and to… breathe more. I was glad to get home.
The next day I had a delight instore- a continuing healthcare assessment. For the lucky who aren’t acquainted with this process, it is an elaborate game of ping pong between social care and health care trying to prove that your needs are in the other one’s domain. If your needs are health based, as my social worker believes mine are, social care argue for the NHS to take on the role of funding and organising your support. More pieces of paper and more number scoring systems for things that really shouldn’t be described on a scale of 1 – 10. As the process makes no difference to me either way and I was very tired from the night before I asked not to go ahead with the assessment. Having only just finished my ‘Education, Health and Care Plan‘ (another delight) I didn’t fancy yet another team rifling through my notes and my needs. So for once I saw an opportunity to protect my notes from the beady eyes of funding panels and took it. The continuing healthcare nurse left a little later once my dry answers turned to drought.
Later was my psychology assessment. Part two of four in what is likely the most boring and confusing saga the world has ever seen. Snot dribbling down my face and occassionally mentally disappearing in front of two (yes two) psychologists I babbled. My world was ending. I had people in my head telling me what to do and how I should not trust the people not in my head. I was dreaming things and then not knowing if they had actually happened or not. Anyone asking me ‘what’s wrong’ would get the most sarcastic of replies because it is everything and nothing all at once. The psychologists asked for my support workers to keep a closer eye on me and, yes honestly, some support will come right after this assessment. Honestly.
Week Two – Jacqueline Wilson With More Drugs
Week Two involved me going to see a potential future care placement. It was an adult fostering arrangement which is what I wanted to happen about 18 months ago when I first found myself in need of somewhere to live. I got the phone call from my social worker to say that the family were interested in me and that my care plans were to be sent over.
“Ha” I thought. I’ve seen my care plans and they are not too distant from one of the weaker Jacqueline Wilson novels but with more antipsychotics… (she hasn’t covered them yet, right?). There was no way they would want me in their house after reading my care plans. I wouldn’t want to live with me if I read those things.
But for some reason they read my care plans and gave the green light. After sitting in their living room for an hour I felt like it would be a viable option for me. But going upstairs to see my potential new room there was a problem. The room was as wide as my arm span and it would be a struggle to fit myself and Noodle, let alone furniture other than a single bed inside. After trying to think outside of the literal box for several days I had to turn down the placement on the logistical fact that I just could not fit myself and my furry assistant inside.
Feeling pretty crappy and unable to go to college because I wasn’t utterly sure who I was, one of my support workers took me to some fields in the dark. I like dog walking in big open spaces as there isn’t much to fall over and as I was beginning to run out of oxygen in my bedroom, the fresh air and beating heart was much appreciated. We started singing along to music in the dark and for an hour or so I thought the depression spell was lifting.
It wasn’t though, and I found myself tearing my room apart to find and disinfect away the ‘bugs’ that were in there and on me the next day. No, I would not take my medication. Why would I? It would make me tired and then nothing would ever be clean. I’d spent the day mostly silent (something that happens often in down periods) and once the cleaning commenced I didn’t want anyone to speak to me or touch me. Eventually, as I scrubbed at the soles of my shoes with disinfectant to get ‘the smell’ off them the team leader on shift cornered me with my weighted blanket and despite my protesting that I’d infect it, draped it over me. In the ideal world I would have taken my tablets, realised this was OCD I was dealing with and manned up and got into bed. In reality I took a shower with a member of staff perched on the toilet seat facing the other way to make sure I was okay. When I did take my meds after the shower I fell asleep quickly, exhausted from the events.
Week Three – Beginning to Float… Maybe.
Coming into week three my life is slowly petering back in to normality. I’m standing up for myself and am able to leave my bed for longer periods of time without panicking. It felt like this down period had been around forever. I still had dangerous urges and my body was a mess. But I was getting there.
One of the places I was going out to was a hearing voices support group. Held in the back room of a church in a town that nobody really wants to go to, we sat in an awkward circle. Cue all the clichés of group therapy. We said our names and said how the week had been. A gentleman turned to me after my emotional muttering about lack of support and he said: “It has taken fifteen years for me to get the right help”. This made me feel sick. I wouldn’t be able to wait that long and no one should have to.
The next psychology assessment I attended in my pyjamas after a sleepless night of thinking about surviving fifteen years on this mood-coaster. Or even the next week. The confusion from the psychology session before was still thick and the probing questions swished away my thin vail of ‘all is fine’. I wasn’t fine, I was lost.
I managed to stay through the whole of my exercise class that week- something that in previous weeks I had been forced to bail out on due to my heart not slowing down enough to stay vertical. I was pretty proud of myself for this and imagined each song as a ‘level up’. At the end of the class I played the Mario level complete tune in my head.
Week Four – When It Gets A Bit Fast
Week four was when things started to turn around. Not only am I feeling less depressed but I find myself laughing and dancing and singing. Not sleeping because I have the “creative drive”. The family my social worker and I went to see would like me to know they want to swap rooms around so that I would potentially have more space. I think this is the best thing ever. Something in my feet asks if in my now majestical mind would see even a wheelie bin in Skegness as a luxury home. But there is no way of knowing until this mood dampens a bit. I seem really happy and I am, but my thoughts are coming at 100 miles an hour. I go to the shops and buy lots of things I don’t need with money I shouldn’t spend. I waste a lot of time too and no I don’t need to eat because I am superhuman. I get angry at little things or when my words don’t explain the enormity of my feelings. I get annoyed when people don’t understand the encryption code my mouth seems to put on my thoughts. I spend five hours bleaching and dying my hair so that it is bright blue. Everything is fun and I can’t stop talking but when I panic I really panic.
And it is in that flurry that I write this blog post… This is my way of both filling in the blanks from when I last posted and also I wanted to share how some illnesses send you round and round in a cycle.
All GIFS: Giphy