In school, I had a particular teacher, my art teacher, who I had a really great bond with. He had a great sense of humour, was a huge influence on my taste in music (thanks to him I properly found Guns N’ Roses, pre American Idiot Green Day, Queen and a whole host of other bands), was always so understanding about my disability and how it impacted me, and was always the one I felt I could go to if I had a problem. I remember one piece of advice he gave me very clearly: if everything becomes a struggle, write down everything that’s worrying you before you go to sleep, and put it somewhere out of sight for the night. I did this throughout my exams, and found it really helped me. It doesn’t get rid of the issue, but I found it stopped me from becoming overwhelmed and I could look at it with fresh eyes when I felt ready and refreshed.

Here I am then, once more taking his advice to heart, if for no other reason than to get it out of my head. I’m having a really hard time right now. You may remember that in 2018, the pain in my back was bordering on chronic thanks to the damage the seat is doing to my spine and that in September of that year, having moved into my own place and thus changing GP practise: I found a wonderful doctor who understood immediately and put the wheels in motion for a plan to make things better: meds, physio and most importantly a referal to the special seating service.

Unfortunately, and I can’t recall if I told you this here at the time, that appointment was an absolute nightmare – they were reluctant to change the seat (I had asked for a re-mold, a longer process but what I need for the problem to be solved.) They stuck another piece of foam in the seat & essentially told me to “sit in it less”.

I hate this part of being a disabled person with every fibre of my being: people always act like they know your body and what’s best for you better than you. I’d love to be able to sit in my chair less, but when you want to be an active, outgoing member of society and do lots to fill your week including looking for a job, you can’t be without the thing that you need to live your life. Sure, I can take time out of it to lie down and I try to, but it doesn’t solve the problem and being really blunt, if I did that every time I was in pain, I’d never get out of the damn bed!

So, life at the moment is a cycle of medication that I don’t feel is working ( 2 Gabapentin 3 times daily plus paracetamol if needed), pain & frequent, intense crying jags. Being in pain physically is really fucking exhausting and I’m scared about where my mental health is headed. I’m so drained of energy, struggling to sleep and consistently bailing on plans with friends, choir and to spend time working on my novel.

I have a virtual appointment on Wednesday with the wheelchair service after my second referal was delayed thanks to two doctors sending incomplete paperwork. I’m not holding my breath as they didn’t take our concerns seriously last time, but I can’t deal with this anymore and something needs to be done. I’m even thinking about funding privately for a new chair, but that’s something to think about when I know where I stand.