When you’re living with my form of Cerebral Palsy, you find that the physical problems often have a massive impact on your mental health. Being confined to my wheelchair most of the day means two things: your range of movement is limited so your muscles become weak as they aren’t being used – in my case this is particularly true of my legs. Secondly, it often means that you’re often in a heck of a lot of pain. My back is the worst culprit here, followed by my shoulders which have been described on many an occasion by separate members of my family and all of my different PAs as massive knots.

People often ask me what the back pain feels like, and it’s hard to describe – it’s always when I move from one position into another, from bed to chair, chair to toilet and so on: my back seizes up, and the pain shoots up my back and it feels almost like it’s burning. It subsides after a few moments, but it’s agony and hard to breathe because the pain makes me tense. Nights are the absolute worst – I regularly go to bed in tears, especially if I’ve had a long day in the chair due to any theatrical shenanigans. Though some days are worse than others, it’s a given that I’m always in some degree of pain and discomfort.

Normally, the particularly bad days can be soothed with a painkiller or with a little help from my tartan heat pack. Recently though, I’ve noticed that pain free days are becoming few and far between, and it’s starting to get me down. Being in pain is exhausting, physically and mentally. I often feel lacking in energy because I sleep so badly, and am often irritable and struggle with motivation.

When I was growing up, I had regular physio and hydrotherapy sessions to help keep me active and as loose as possible, but frustratingly as soon as you turn 18, this support stops and you’re left to your own devices. I had one appointment with the DART (Disabled Adults Resource Team) whilst I was still living at my mums where, despite my protestations that we didn’t have the right set up (my bed wasn’t appropriate to use for my physio) and my PA saying they didn’t feel comfortable doing them with no proper training, they left us with a sheet of exercises and disappeared off into the sunset never to be heard from again. Also, my interactions with social workers here have been piecemeal at best, mine closed my file a month or two ago now I am “settled” in my own home – because of course I don’t need support now I’m functioning as a normal adult with a disability that is lifelong and still presents challenges, right?

That’s the infuriating thing when you live with my disability – its an almighty, sometimes daily battle getting people, especially healthcare professionals to take you seriously. The last two occasions I visited the doctor with my back pain, I was told:

1. “Are you sure you haven’t done anything else… fallen or anything?”
2. Almost three weeks of persistent, severe, tears on an almost daily (sometimes more than once a day) inducing kind of back pain “wasn’t cause for concern”.

After that second occasion, the doctor did deign to give me codeine but sent me quickly on my way. I took it once and it made me feel so sick and totally out of it that I swore I never want to take it again. These experiences don’t exactly inspire confidence about going to my GP, and even though I have now moved and am under a different practise, I’m still loathe to go because the fight is just so draining.

Others have said to me that I need to just “get out of my chair more” but I wish it was as simple as that. I do have another chair that I can use, but its a massive purple reclining armchair that, whilst comfy as hell, I cannot control under my own steam, so I’d rather not sit in it and keep my independence. I could also get out and lie down, but if I did that often and every time I was in pain, I’d never get up!

All this has led me to a realisation that I want things to change: I’m tired of the low moods and being reliant on aspirin and want to try and do something for myself. To that end, thanks to a friend I was put in touch with a personal trainer, and we met last week. While a lovely lady and eager to help, she told me that she hasn’t ever worked with anyone with my disability and as such, before we can get started, she wants me to go back to my GP and fight to be referred back to a physiotherapist, so she can work in tandem with those who have the experience she lacks. We’ve talked about trying other avenues too, like osteopaths and acupuncture, because I’ll try anything to help me manage my pain better. The trouble with that is, while these people might be willing to help, their places might not be accessible in the way that means I can use them (I hate the blanket nature of that term so much), so a physiotherapist might be a better bet.

We also talked about my nemesis: swimming. I don’t have a phobia of swimming per se, but due to a number of bad experiences around it and water more generally, I choose not to do it, because it makes me anxious. I’m reliant on other people to make sure I stay afloat and while I know nothing bad will happen, that’s a heck of a lot of trust you have to give someone. It’s daft really, because I know it will do wonders for me, it’s just a mental hurdle I need to work through and face my anxiety. Both Emma & Shelley (my PAs) have said separately they are happy to take me, but we have yet to set that up.

I’d also like to join the gym, but again as usual I don’t know of any that would cater for my disability… but I’m looking into it and in the meantime have bought myself a 1kg weight to try and build my arm strength! The gym would also do wonders I think for those low days, just having something to focus on and share with other people.

It’s so frustrating that us adults living with disabilities are left with the inadequate support we have. So, I’m gonna try and take back some control and get active the best I can. Stick with me to see how it goes…