Getting arthritis at age 20
I have been putting off this post. It is not a subject I like to think about or dwell on. But it is, sadly, an unavoidable part of my identity, much as I wish it wasn’t.
I hate having it. Of course I do. And I am nearing the point at which I will have had it for more than half my life, which is a depressing thought.
I was happy at uni, greatly enjoyed my first year, living away from home for the first time, taking this exciting new step on the path to adult life. I didn’t hugely love my course, there was too much maths, and I didn’t manage to switch. That’s a whole other post. But generally, I was having a ball.
I am not entirely sure what caused it, as scientists are not sure either. I strained my elbow and twisted my ankle at Easter time in my first year. I never rested up fully, as I had an exciting, active life and wanted to continue running around in the woods hitting my friends with rubber swords (otherwise known as LRP) or even hitting different friends with metal swords (re-enactment).
In fact, that summer I managed to get my finger broken by one of those swords. Advice: never go into battle without the proper protective gear, in this case gauntlets. They were invented for a reason!
Then that autumn I had flu. I hardly remember the details, but I think was just a fairly normal kind of flu. But afterwards I was so tired all the time. I slept so much one day I was only awake for an hour and the next day for three hours. I fell asleep in class. I felt depressed, which puzzled me.
I tried to soldier on, but the ankle was playing up too and it was hard to get about as I had no car and the university buildings where I had lectures were spread about, so I was often late through no fault of my own. If they schedule one class right after another in buildings a mile apart what do they expect?
I stuck it out until February, when it was decided that I had to give up and go home until I got better.
Although I had been to the doctors and the hospital and had blood tests, I had no diagnosis. Just the mysterious ‘post-viral fatigue syndrome’ which seemed to be a label for something they didn’t understand or know how to cure.
I spent time sleeping and lying on the sofa watching the Landscape Channel, which I loved as it was undemanding and distracting. Just lovely Classical music and scenes of beautiful nature. My favourites were the flying ones.
My Mum read somewhere that chocolate was a good treatment for this illness, thought to be similar to ME. So she made me eat 3 bars a day! Mars bars, Crunchies, Wispas, Aero, many and varied were the chocolates. I even got a bit fed up with it. And the scary thing is that I was not putting any weight. I was eating the usual 3 meals a day as well, including vegetables and protein.
Occasionally I would stub a toe or bang my hand, hurting a finger or something, and it would hurt a lot and swell up. And the ankle and elbow were still playing up. But the main symptom was the tiredness. I was able to sleep through a phone ringing loud and shrill a couple of feet from my head.
Eventually I got referred to a rheumatologist. It had taken a year or more before this happened, but I had shown up negative on the blood test for rheumatoid arthritis. It was not the best day of my life (please note, extreme understatement!). I had to strip down to my underwear and be poked and prodded by a stranger, then told I had arthritis.
Not Post-viral fatigue after all.
Not a reasonably benign illness where all I had to do was sleep and eat chocolate.
Oh no. I had an old person’s disease. (Of course, at the time I knew nothing about arthritis at all. It can affect children. I thank God for my happy healthy childhood!)
And the treatment was vile. And if I didn’t do it I’d end up in a wheelchair. Of course, I might anyway.
I haven’t. But I didn’t know that at the time.
So I had a diagnosis of sero-negative polyarthritis at the age of 21.
That’s another long fancy name for something they don’t really understand. All it means is ‘doesn’t show up in a blood test and affects more than one joint’.
It was the inflammation in my blood making me so tired.
Well, that’s probably my longest post yet, so I’d better stop there. I suppose I shall have to continue the story some time.