Saturday, 24 December 2016

Me And My Fucking Balloon

2016 is the year when I've learned more than I would have wanted to about limitations. My limitations. It hasn't been easy. Those unfortunate enough to have spent time in my company cannot fail to have seen that physically I haven't been great. I've learnt a hard lesson about the dangers of altruism. I should probably explain. Approximately 3 years ago I was diagnosed with arthritis, and placed on medication that controlled the condition one hundred percent. One of the trade offs was that it meant I had to stop giving blood. I've hated this. I'm passionate about donating and have been following the vampire vans for years. As such, and taking into account that I was symptom free I set sail towards a goal of reducing the tablets to the point where I could get back to donating. From 2000 milligrams, I reduced to 1500, 1000, 500. The process took 18 months and I did so without adverse effect. Further to a discussion with my rheumatology consultant late 2015 we decided that I should try to see if I could live unmedicated, because if I could I would be able to donate again. Long story short, I ceased taking medication late February 2016, and for two months I was doing ok. Only in April I began to notice warmth and swelling in my left knee, a familiar stiffness that gradually increased in severity. I was philosophical, contacting my GP and asking if I could resume taking the tablets. I kind of admitted defeat, and just assumed that if I went back on the meds then all would be well. I had no idea that as the joint became increasingly inflamed it was putting critical pressure on the back of the knee itself. I'd simply assumed that things would settle down in due course. July 2016 was to provide all kinds of fun, not least when I experienced what is known as a Baker's Cyst,which decided to rupture, sending huge volumes of fluid down my calf and into my ankle. The lower leg and ankle inflated to twice the normal size, whilst also causing significant internal damage to an already very badly damaged knee. The result was that there were some days when I could barely walk. Days when routine tasks became stupid wars of attrition. Steroid injections combined with a huge increase in the dosage of the meds have resulted in very limited improvement, and there's no real evidence of any positive change. The medication that had me symptom free before no longer works. This means I'm having to lead a heavily restricted lifestyle. Long walks on one day can render me practically disabled for days after. Stairs are a unique challenge, whilst doing anything more than a slow walk is a bridge too far. So I'm having to learn to live within certain limitations, which isn't a road I've travelled before. I'm having to compromise, to weigh and measure what I can and cannot do on any given day. The condition impacts my sleep, my mobility, and on occasion even my capacity to drive. Add to this a neck problem which has similar costs then as you can imagine this year has worn me down. All of which is to say that if I've seemed a bit sniffy when we've crossed paths then I'm genuinely sorry. I'm probably just a little fatigued, a bit worn down by it all. I'm having to recalibrate on many levels, and I'm keen to arrive at a place when I stop craving the old certainties and begin thinking in terms of new horizons. I'm trying to remind myself of all the things I can do rather than bemoan what I cannot. Long term conditions require a steadfast mindset, an inner resilience, and on the really bad days just plain guts. This bastard condition isn't going to define me. I'm going to do the balloon thing. You know? When you try to squeeze one curve of the surface another curvature surges out. That's going to be me. I'm going to be a fucking balloon. Just you watch me.