Everybody has their own story. Everyone’s story is different:
What disease they have.
How it progressed.
How it is likely to progress in the future (if they know).
How it affects their lives.
How they manage the disease, both physically and psychologically.
And how they look past their disease to embrace life and find joy…
I, like most people, always thought of arthritis as something old people get (you’re probably sick of hearing that one). I generally thought of it as a natural progression of ageing, involving gnarled hands that hurt a little when the rain was coming. And for some people it is.
The first time I thought about how it might affect me was when I noticed my mother had Osteoarthritis and I asked her how long she had had it. She told me it had come on in her early 60s, and since I was in my early 40s, I figured I had lot’s of time before I had to “worry about any of that”.
Looking back, the first signs occurred in my mid-thirties — my whole body jolted painfully when I landed from a jump, I felt stiff when getting up and sometimes my hands ached. I thought it was a combination of getting older (in your 30s? pah, seems like a really stupid thought now), being tired all the time, as I had young children, and maybe not eating enough calcium (as the thing I thought of immediately was Osteoporosis because my sister had been diagnosed with it at 39).
These symptoms progressed slowly and surely, along with “clumsiness”, until in my mid-forties I started to realise that stress and sleeplessness didn’t explain what I was experiencing. It went beyond that. The strange thing is that (another) sister and I both developed more severe symptoms at the same time last spring — she had symptoms of Rheumatoid Arthritis while I have Osteoarthritis with a question mark over Ankylosing Spondylitis. I had noticed my knuckles were enlarged and red and that if I used my hands too much they hurt in the same way that the muscles in your legs might hurt when you exercise more than you’re used to. I couldn’t do a whole lot of daily tasks, like peeling veggies, lifting a full washing basket, holding a jug or pot with one hand…the list goes on…tucking in my bed. Not ‘normal’. And, as I have a severely disabled child to look after, my growing weakness was doubly worrying.
I went to the GP a couple of times before he felt my symptoms warranted a specialist referral. At that point, I couldn’t do much with my hands and even had trouble writing. The Rheumatologist told me I had early stage Osteoarthritis and sent me away for blood tests and x-rays.
It wasn’t until I was halfway home (driving in shock: not recommended. I mean who gets arthritis in their mid-forties???) that I realised I didn’t know what to do next. Surely some sort of rehabilitation plan was in order? I took myself off to a physio and then Handworks (who are excellent, by the way). Handworks noticed symptoms of dystonia (my hands would seize up during squeezing exercises) and sent me back to my GP for a referral to Neurology. A couple of weeks after seeing the Rheumatologist I started having trouble walking — it was like my legs weren’t doing what I was telling them to do and my right leg sometimes went into a spasm. It was a 6 week waiting list to see a private Neurologist (something’s wrong with that picture). A month into the wait I was admitted to hospital with suspected MS. Results negative. Discharged with crutches. Still no rehabilitation plan.
I had to stop working because they wouldn’t reduce my hours or give me leave (and the ironic thing is, I worked for a disability service). I knew I needed to do something creative to save my sanity at that point, so I started writing (typing). I actually started during my hospital stay. And since I couldn’t paint, or garden, or do any of the things I loved, I started learning photography and computer art. That has been such a lifesaver for me. Creativity, no matter how you express it, is so theraupeudic.
A few weeks after my hospital visit I went numb in my left leg. Prick tests showed a lowered response in the L5 nerve (the root of which is at the base of the spine). I would fall over without any warning every month or so. I went to three physiotherapists during this time who all said something different. I finally saw the neurologist, who said I presented normally. She referred me for further neurological testing (1hr 40 minutes of being electrocuted and stabbed with needles for nerve and muscle response testing). Result: mostly normal. I paid for a private MRI because the public system didn’t want to know and I didn’t want to fall over again.
The results came back in a convoluted and barely understandable letter that used words like orthrosis and spinal degeneration. I read it with a medical dictionary at my elbow and made extensive notes in the column. But my GP, Rheumatologist and Neurologist all interpreted the results differently. The Rheumatologist noted in the follow-up letter to my GP that I had tested positive for the genetic marker HLA-B27 and had spondylotic changes in my neck — information he didn’t bother to tell me, btw. What he actually said to me was that he “had no more to add to my story” and he gave me stronger painkillers (Lord, bless him, ’cause pills fix everything). My Neurologist says I’m healing from acute trauma to my lower back and has put me on Amitryptaline and beta blockers to calm my nerve responses. I don’t remember the event which caused this damage and in fact, my back pain came on very gradually in the two weeks before the second MRI. My GP says there’s nothing wrong with my spine but normal age-related issues.
I have a feeling I’m playing a waiting game and it could take ages to get real answers. The good news is I’m off my crutches and I haven’t had any falls in a while but I still find it very difficult to walk down stairs. I’m still not sure what kind of exercise is safe — I think I’ll stick with gentle swimming for now because everything else hurts.
It’s still early days for me. So many questions as yet unanswered. But I think this must be a common experience.
All our stories are different and they all need to be heard so that we can support and learn from each other.
This is my story (so far).
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