Blimey, I’ve just counted and it’s 139 days since the last ‘Azathioprine update’. That’s 4 blood tests, 4 lots of results, some random appointments and a whole lot of readjusting since I went back to ‘Square One’ in July.
On the whole, it hasn’t been too terrible and there’s still no green, scaling skin, newly grown limbs or unusual superpowers to report. The worst of the joint pain is still being held at bay (hurrah) and I’m definitely a hell of a lot more mobile than I was this time last year, or the one before that, or the one before that…
Fatigue-wise, it’s all much of a muchness, but that was always going to be the case. There is NO drug, quick fix or cure for chronic
slothitus fatigue, more’s the pity. What I have learnt, or rather, what I keep learning, but never seem remember, is this: I can manage day-to-day as long as I do absolutely nothing.
Ok, that sounds a bit bleak, I admit. What I mean is, as long as I don’t try to push myself, be overly ambitious, think I’m more capable than I am or do anything resembling reckless, I can, for the most part, get stuff done. That said, I still have very regular relapses when energy levels are at zero, zip, zilch and nada.
The approaching winter is, however, definitely throwing up a few curve balls. During the last 6 weeks or so I’ve bounced from one thing to another, never quite having the chance to come up for air or recover in between. Is this down to the Azathioprine? I’m not entirely sure.
Having put the infection and headache behind me, I promptly came down with the flu. Not that I actually realised it was the flu, until I was already halfway through the whole aches, pains, coughing and wretched snivelling. That, in itself, just goes to show how many horrible symptoms someone with Lupus will pass off as ‘normal’ before they even entertain the idea that something else might actually be wrong.
Just for the record, I did line up with all the OAPs in the village for my flu jab this year, but clearly, that wasn’t worth the nasty pain in the arm it gave me. Either the head honcho at the Influenza Immunisation Programme picked the wrong strain to target this year or my body plans on surrendering to every single virus comes along.
With a cough still lingering a couple of weeks later, I’m now wondering just how well my now suppressed immune system is going to fare this winter. I’m practically housebound as it is, and when I do go out, the cold weather shocks my body into one sort of head-to-toe meltdown after another.
So I choose to stay inside, dress in fleece onesies and whack up the thermostat. A perfect solution, you might think, except for the fact the central heating seems to bring on a whole host of other problems: even drier eyes, terrible headaches, sniffs and sneezes, additional tiredness, wooziness and increased brain fog. But turn off the heating and the Raynaud’s and general miserableness kicks in.
I think that’s what you call a lose-lose situation.
So, what pray is the answer? Rethink my choice of drugs? Completely avoid civilisation? Wear a full germ resistant biohazard suit? Or perhaps I should just do like a hedgehog, disappear under a pile of leaves and hibernate till Spring?
Either way, I am slightly concerned that by the time the trees have regrown their leaves in 2017 I’m going to be translucent in shade, socially inept and adding muscular dystrophy to the list of woes.