I’m 22, and I’ve got ankylosing spondylitis, and I was diagnosed with that about two years ago. I wasn’t really sure what triggered it off, but I remember when I was 11 years old and in my last year of primary school, I was playing basketball in PE and I jumped down and as I landed my left leg just buckled underneath me and I didn’t think anything of it, I thought I probably like ricked my ankle or something.
But I got home and I couldn’t sit down, I couldn’t lie down, I couldn’t stand, everything that I did it was so painful. And I was crying my eyes out and my parents didn’t know what to do with me. I didn’t know where to stand, what to do with myself. And then they took me to casualty and they had no idea what was wrong. They x-rayed me and said there’s no breaks, they said there’s no sprain, we don’t know what’s going on, we’re going to give you some ibuprofen, and it kept coming back like over the years I’d wake up one morning and the pain would be there, or I’d be I don’t know doing a sit up or something, and I’d just hear a click and that was it, it was just, I knew then that for the next week or so I’d be in a lot of pain.
And for a while I thought it was growing pains because when I did get it felt like one leg was longer than the other, and I was like walking with a limp because I just couldn’t put both legs on the same level, it just didn’t work.
And I was getting pains in like my buttocks, like all down the back of my legs and in my lower back, and I went to a Chiropractor in the end and the Chiropractor had no idea what it was, but she’d like poke around and click my back and my neck and everything and it was handy cos I always had like neck aches and things.
So and it got really bad when I was about 16. And I remember going into school and one of my friends going, “Why are you walking like a penguin?” And she said it right out loud in the middle of the corridor and I was so embarrassed. I hadn’t realised until then like how I must have looked when I was walking. And it got worse and worse until the point where I was, I wouldn’t, I refused to take part in things in PE, ‘cos I thought I’d just end up with a flare or something.
And I came to university and it was okay in my first year, and not, it wasn’t that bad. And then like there were some mornings when like I couldn’t get out of bed and I had to roll off the bed and crawl around on the floor, but it would get better during the day and in the end I would more or less forget about it. And then it wasn’t until my second year where I had my exams that things started getting really, really bad, and I couldn’t sleep at night. I was crawling around on my hands and knees a lot, to the point where you know other people were noticing…and because I was not sleeping at night I would fall asleep during the day when I was supposed to be revising.
I couldn’t breathe properly, so my ribs felt like, I can’t really describe it, it was like they couldn’t open to let me breathe deeply, and when I tried to it was like they were on fire or something. And I couldn’t twist, so I couldn’t turn to pick things up, I couldn’t, I couldn’t like wipe my own bum. It was just so painful just to move the tiniest of movements. I couldn’t sit down, I couldn’t stand up, I couldn’t lie down, it was like back to the beginning all over again but a hundred times worse.