The first time my hands froze into a claw-like grip, curling up like the crazed witch in
Walt Disney’s Snow White as she gives her the poisoned apple, I thought I was having a stroke. I was sitting in a GCSE maths exam scratching my head as I tried to work out some crazy mathematical equation and suddenly my hand just wouldn’t move. I tried putting down my fountain pen, but my hand wouldn’t let go. It was suddenly like my fingers had been glued to the shaft of the special pen my parents had bought me for school that year. I remember looking down in confusion and seeing that my hands had gone a skeletal shade of white. I remember prodding the death-grip hand with my normal fleshy coloured hand and the rising panic as my fingers started turning black as the blood failed to come back into my hand as I prodded and prodded.
Shockingly I didn’t fail that GCSE. I managed to battle through, but not until I had painstakingly prized my fingers apart, slowly moving my stiff joints until they were flat on the desk next to my incomplete test paper. It seemed to take a life time as the exam clock ticked slowly away and my future seemed to be literally slipping through my wax-looking fingers. I remember thinking that everything would be ok as long as I could finish the exam – and as long as my fingers didn’t snap off!
I was just 15-years-old.
Over the years this joint stiffness intensified until there were days when I literally felt like a tin man needing oil just to move. Every bone, joint and muscle felt like it was made of stone. I creaked when I moved, and when stretching in certain ways my bones made a sickening snapping sound.
Some nights, after gripping a pen all day or spending hours shading and sketching for my GCSE and A Level Art coursework, my hands would freeze solid when I was trying to eat. My dad would have to prize my fingers one by one off my knife and fork, pulling my joints painfully back into position. I still have to do that now. But back then it all seemed so much more frightening.
My hands went through their most challenging few months when I was learning shorthand for my journalism course. I would spend hours every day scribbling the hieroglyphic like symbols, forcing my hand to move faster and faster across the page in an attempt to get up to the required 100 wpm. It was agony. In some of the exams I had practiced so much before the test that my hand simply wouldn’t move across the page. Every second was agony. Of a night after hours of practicing i would lie with my hot water bottle pressed against my wrists trying to ease the pain shooting through my joints…I often dropped wine glasses, pens, handbags. It still happens now after long days in court, but I guess I’ve just got used to it.
Learning shorthand was like boot camp for journalists…survival of the fittest, but it was torture for my hands, and the more they stopped me progressing the more frustrated and depressed I became.
Over the years the pain that started in my right hand and wrists has spread to most of the other joints in my body. I often lie awake at night due to the pain in my lower back, my knees sometimes give way and my blood in my wrists sometimes feel like its burning as it travels through my veins. My shoulders are the worse, they always feel like they’re dislocating, and I can’t undo my bra from behind.
Despite all these obvious joint problems, and despite complaining about them to my gastro consultant, IBD nurse and surgical team, I have never had any treatment for my joints. I have always been fobbed off with the bog standard “It’s all related to your Crohns/Colitis” reply to my pleas for help. This has been going on for almost a decade.
Last week I finally got an appointment to see the Rheumatologist. I was astounded when I opened the letter, if anyone had been watching they must have thought I’d won an amazing prize from the delighted look of astonishment on my face. I went along to the appointment and after being stretched sideways, backwards and forwards by a very lovely consultant I was told I had Rheumatoid Arthritis – possibly induced by a decade of steroid treatments combined with the side effects of my Crohns/Colitis.
I would have punched the air if I didn’t have such bad joints. It was a ‘I told you I was ill’ moment that would have made Spike Milligan proud.
I already have osteoporosis, and now I almost officially have arthritis. I say almost as I have to get some tests done before anything can be certain, including a scan of my back, bloods..etc. But I am finally getting the treatment I need, and amazingly enough I have been signed up to get physiotherapy – at last.
I guess only time will tell how much damage the doctors ignoring my symptoms for the past 10 years has done, but for now I’m just happy that someone has finally listened to me. I’m hoping that the injections (humira? – which I have already been there done that) will not only mean I can finally open a bottle of pop without knocking on a neighbour’s door for help, but control my IBD which is on the verge of an especially nasty flare at the moment.
Meanwhile if any of you have any advice for things I can do to ease the constant joint ache and pain please let me know.