As you may know, May is National Arthritis Awareness Month and this year’s campaign, launched by Versus Arthritis, is The Painful Truth. So, in the spirit of raising awareness, here’s mine…
As much as I hate to complain about my life, I think it’s important to remind myself I am not doing this for me. The motivation behind my blog is solely to help raise awareness and work towards an end of the stigma surrounding arthritis. It isn’t about me having a place to moan or seek sympathy, it’s just my way of demonstrating the realities of living with a chronic illness.
Alongside my fellow warriors and the lovely team at Versus Arthritis, I’m excited to make some videos throughout May and continue to use my platform to raise awareness. As always, it is you guys who inspire me, so please don’t hesitate to let me know what you want to hear from from me - tips, advice, daily updates, anything at all!
So, here goes…
The truth is, my journey all began when I got Glandular Fever 10 years ago. Up until then I was a pretty healthy child. As bad as Glandular Fever is on its own, my case was definitely made worse by being prescribed the wrong medication as they thought it was tonsillitis! That led to me breaking out in a fully body rash and swelling everywhere! After a few awful weeks and over a stone of weight lost (that wasn’t there in the first place) it settled itself down just in time for a school ski trip.
So off I went - with a risk of rupturing my spleen due to the Glandular Fever – but more excited for the trip with my friends than worried about that! About 3 days later, going no more than 5mph at the bottom of a slope, I slid into a snow pile and BAM – my boots got stuck, my knees twisted. My left knee clearly could not hack it and I tore my medial collateral ligament (MCL). Or, at least that’s what they said, but then they put me in a cast for 6 weeks. Far from ideal!
”None of it was clear.”
As expected, once the cast was removed my leg had wasted away to pretty much nothing. After a little bit of physio, I was sent away as if nothing had happened. As younger people do, I didn’t think much of it and got back to normal life straight away, just with one weak leg. However, my knee didn’t want to stop there. For the next two years it continued to swell up and stop me doing things (which when it came to cross country in P.E. I was quite grateful for!) As problems persisted, I ended up going for steroid injections and procedures to extract excess fluid out of my knee. It was then I was told I had Juvenile Idiopathic Arthritis (JIA)
From what I remember, I then had a bit more physio had to wear a leg support brace for a couple of weeks. None of it was clear. Then, once again, I was discharged with no further mention and no real answer.
“I was discharged with no further mention and no real answer.”
Looking back - and now with the view of a healthcare professional – the experience was really unacceptable. I live with so what if’s now – what if I was just kept an eye on, or had a few follow up appointments, would I have discover my RA sooner and be further ahead in my treatment journey than I am now? But, there’s no use dwelling on the past. Life goes on.
Fast forward 4 years, just into my third year at Uni, a time when (after the inevitable first and second year weight gain) I’d been trying to get back in to shape and focus on fitness and strength. My left knee was just not having it! It was always pulling me back, but at that time there was no answer. I had forgotten about the JIA diagnosis so it was all dismissed as pain from the old injury.
After an injury I sustained on a night out, which was followed by recurring, unexplained swelling, I was finally diagnosed with Seronegative Inflammatory/Rheumatoid Arthritis. After a few horrible weeks on codeine, naproxen and crutches, I started on Rheumatoid medication. As I responded to the prescribed Sulfasalazine very well and rather quickly, I didn’t learn much about it and I didn’t let it affect me. Maybe a good thing, maybe just denial? Either way, I was absolutely fine for just under a year.
Then, my hands started swelling and I began to experience other RA symptoms, such as chronic fatigue. Unfortunately, all this happened at the time I was hoping to come off my Sulfasalazine, which was instead increased. I continued this way for a good year or two, masking the truth and claiming I was doing better than I actually was. I know no matter what cocktail of meds I take, the Drs can’t completely eliminate flares, but, looking back, I think I was in a continuous flare for about a year and I now realise that wasn’t good enough. I deserved better than that, especially in this day and age where medications are readily available.
“I deserved better than that”
From that point on, you all pretty much know everything. It wasn’t long then before I took the plunge and started Under Young Skin, so the rest of my story is within my blog posts and videos.
My painful truth is that, although I always advocate for the power of sharing, communication and being open about your struggles, I don’t always practice what I preach! I have days where I know I am doing enough for myself, and days where I think I shouldn’t have to feel this rubbish. But that’s just part of living with a chronic illness.
That is the painful truth of a life with arthritis.
Thank you for reading,
’Kindness Club’ jumper from spoonie.co.uk