Riding the merry-go-round

The thing about my Cerebral Palsy is that it sometimes makes me feel a bit like I’m riding  merry-go-round, but not one that goes at a steady pace and plays soothing music; one that goes far too fast and shakes you right down to the bones.

I feel like this blog has lost its positive attitude of late. I haven’t been writing about ‘fun’ topics. I feel like I haven’t said anything that might make you all smile for a couple of weeks now. Sorry about that, but when I started this blog I wanted it to be as honest as I could about my life with my disability, and that means that I have to talk about this stuff whether I like it or not. I don’t, as it happens, but I think you probably knew that already.

You see, I feel like I’ve been riding the merry-go-round lately. This happens sometimes. I get into a cycle where things don’t feel like they’re going great for me from a CP point of view, and I  just have to wait and ride it out until it’s my turn to get off again and things can get back to ‘normal,’ (don’t you just hate that word?), and I start to feel better both physically and emotionally.

It started a couple of weeks ago when I started having pains in my hip and I had to face up to the fact that I’ve been letting my physio slip. This week it’s my back that’s decided it’s going to hurt. Next week, my shoulders might well decide that it’s their turn to play up. Then again, they might not. It might be a different set of muscles or body parts, or I might feel fine, who knows?

Round and round I’ll have to go.

Round and round I will go, moving from physio and stretches to putting wheatbags on the sore area, all the while I will be continually asking myself what I might have done that’s caused this aches and pains. I’ll tell myself it’s not my fault, I’ll tell myself it is. If I can’t fix it, I’ll beat myself up over it. I’ll tell myself off for not having the answers even though I’m not a physio and no one expects me to have all the answers. Yet,  somehow, I expect myself to. I feel like I’ve been going through these cycles for so long and I should be able to stop them, but I  can’t. Maybe I’ll never learn how.

I’ll toy with the idea of asking for an appointment with my physio countless times, but I always feel guilty about asking for one. What if things aren’t as ‘bad’ as I think they are? What if I’m taking away a slot from someone who needs it more?

Around and around I’ll go, until things stop aching.




The Surgery Diaries: Banishing my hydrotherapy hatred

A couple of weeks after the surgery I was told that I’d be starting hydrotherapy as part of the recovery process and my heart sank. I’d had group sessions a couple of years before at my local pool and I hated it, although it was there that I finally did learn how to swim aged about 11.

At first I’d disliked it because I couldn’t swim without armbands and all the other kids seemed to be better than me which made me very, very sad. The physios there would make me work hard and then I’d have to go to school smelling of chlorine and answer questions from my classmates about where I’d been. They’d ask me how far I could swim, and I’d have to tell them that I could only manage five metres. I felt lame. I used to go to bed on Thursday nights and hoped that I would be too ill to turn up the next day.

Over the years though my Friday mornings in the pool paid off and I learned to swim not only on my back, but on my front AND under the water; the latter being my favourite way of doing it. Eventually I started to look forward to going, although I still didn’t particularly enjoy it. I liked it because it gave me a chance to meet other kids from other schools and everybody would try and help each other reach our targets when we could. I could see myself improving, but it got to the point where I couldn’t really take time away from school lessons to go anymore when the work became all about passing exams.

When I found out I’d be trying it again I felt really nervous because I was worried that I would have deteriorated, but at least these sessions would be one-on-one in a proper hydro pool rather than my local swimming baths.

Getting in the first time was hard work. I still wasn’t allowed to stand after the operations, so I had to slide from my wheelchair (with the help of my Dad) onto a bed/lift thing that lowered me into the water, and my feet   could barely touch the bottom once I was in. I was pleased when I realised that these appointments weren’t really going to be about swimming, but just about doing exercises mostly. The water was so lovely and warm, and it felt so nice just to be floating again while it look my weight, that I really, really looked forward to going. Luckily when I started my A-levels at school after summer was over; there was a gap in my timetable on the days that I was supposed to go so it was still okay. Schooldays felt long and tough at first so it was something nice to look forward to that helped me through my Tuesday morning.

A couple of weeks into the appointments I was allowed to try and take a few steps while I was in the water because it would support me and it wouldn’t be the same as trying to stand on my own or something. It was hard but It felt wonderful. Never again will I dread hydrotherapy.