People often ask me what’s it like to have Rheumatoid Arthritis. This is what it’s like. It feels like I have flu everyday, with aching, stiff, swollen and heavy joints that actually crack when I move sometimes. My hands feel as if I’m wearing rubber gloves with padding in them and when I bend my fingers all this extra flesh has appeared from nowhere. They look like Michelin Man’s female companion’s hands (if he had a female companion). Never-ending fatigue, joint and muscle pain day and night. Distorted hands and hollows on parts of my body where muscles are wasting away. Feeling weak and ‘shattered’ constantly.
Previously simple tasks such as getting out of a seat require lots of preparation and effort. Gradually edging towards the edge of the seat, gripping on to the sides, and using all my might to lever myself into an upright position uses up a lot of energy. Standing when about to get off the tube train (or bus) involves holding on to the rail with both hands and trying (and usually failing) to remain rooted on the spot (but this is due to having Ehlers-Danlos Syndrome rather than RA).
Walking isn’t something that happens naturally now. Each step is a slow, conscious manoeuvre and my spongy knees and creaking hips are always painful. My hips and knees feel like honeycomb inside – as if they are hollowing out and becoming unstable – but I don’t know how much of this is mental or physical as I have never had a full body MRI scan and last had a DEXA scan a year ago.
Putting clothes on becomes a lengthy performance as buttons are hard to do up. I’ve actually broken the chain on a necklace twice because I couldn’t do it up properly and took it back to the shop to be told, gently, that no one else had had that problem. I was crestfallen. To their credit, they gave me a new chain each time. I then decided to buy a nifty gadget that fits on my necklace that acts as a magnet and means I don’t have to undo necklaces in the conventional way. Relatives bought me a special plastic ‘flower’ that means I can open bottles more easily without having to ask strangers in cafés or on public transport to help me. I’m on the hunt for other gadgets or innovative ideas to make living with RA and EDS easier and to free up my time to live as ‘normally’ as possible.