When I was very young, I struggled to walk always preferring the pram and when I did walk I walked with my knees bent, my foot turned in with every step. After a while I was diagnosed with arthritis, the swelling and inflammation of the joints with pain, stiffness and the restriction of movement. Mainly I suffered with my knees, jaw and hips. From then on I became very used to hospitals, every week I had physiotherapy sessions, check- ups, monitoring etc etc. I was given exercises, rules, restrictions all to help prevent further damage and perhaps future crippling of myself. I wasn’t to sit with my legs bent, I wasn’t to participate in any activity which could cause joint damage, it was important that I follow the rules and exercises I was given to actually make me walk properly and not end up crippling my legs, and so that I could deal with the pain. If I were to sit with my knees bent for 10 minutes I’d be unable to move and cry out in pain. Mum was the biggest part of helping me deal with this. Mum with me at the hospital, mum wrapping me in cotton wool so I didn’t hurt myself, and mum up with me every night crying with pain that my joints were suffering through. I went through 2 operations as a child under anaesthetic and had so many tedious and tiring hospital appointments just so that my legs would grow and develop properly. Which they have done now, I was on a height progression aiming to being 6 foot the doctors estimated, the arthritis stunted the growth of my legs so I hit 5.9ish and stopped, thank god! I hate being this tall as it is. I was given medication that eventually became higher and higher in dosage but I never liked taking tablets, I still don’t. I believe in fighting and dealing with things alone.
Over time the arthritis travelled to the back of my neck, this has been the worst thing because my shoulders hurt a lot. My knees though I got used to the constant aching. They always hurt, even now as I’m writing this my knees are aching and I just ignore it because it’s always been there. When I get cold and wet it’s a disaster. Going in the British sea for half an hour means I won’t be able to walk for three days later. If I get wet and cold I hit frantic anti pain mode, I strip off as soon as possible, wrap up in fresh warm clothes, thick socks are the most important thing and then I get warm quickly. I always sit in a place I can straighten my legs out, god forbid I’m trapped with my knees bent for longer than 10 minutes! Uni friends might notice I always sit on the end of the row. I carry my slippers and fresh socks basically everywhere, weird to most people and I’ve gotten some stick but those people don’t appreciate the difficulty I have sometimes. I have to take precautions. I haven’t been to regular hospital appointments for years now, and I cope very well I think compared to how I was as a child. I learned how to judge when I’m in danger of hurting myself and when I’m fine. I learnt to tell the difference between general muscle pain after exercise and joint pain. I’d say the thing I hate bout my arthritis is that in winter I struggle, and I know it weakens me. I hate weakness in myself. I don’t like feeling like I can’t do things because my arthritis restricts me. I only get frightened by my arthritis when it’s really cold winter and my hands become crippled and half the time unmovable. It’s these occasions I can’t hold it in and I have cried with the pain of the cramp in my knuckles and this means I can’t write, I can’t draw or paint. That frightens me. If I ever reach a point in later life where this is a regular occurrence I don’t know what I’ll do. If I can’t write and create then I am pointless. If I were to awake in hospital randomly the first thing I’d ask is…”Are my hands ok? Can I still use them?” Without the ability to create I would be a soulless person.