I think it might be useful to record my coming to terms with Addison’s Disease, much as I did with Chronicles of the Heart and my heart-related problems and now, as then, I’ve been lucky to survive even more consultant-related fuckuppery .
As I’ve said, my Addison’s was diagnosed a year ago, but I wasn’t told, and my GP tells me that the information sent to him was hidden, and I quote “Your specialist buried the mention of blood tests in his discharge summary…”.
I don’t know who that incompetent fuckwit was, but I do know that Addison’s can kill, and that by not informing me, or providing clear and upfront information to my GP, he actually put my life in danger. Given how profoundly ill I was throughout last year (and how much time I spent in Arrowe Park Hospital, where no-one else picked up on the Addison’s), I guess I was very lucky not to tip over into a full-blown Addison’s crisis which, because no-one knew I had it, and I didn’t have my emergency kit would have very likely killed me.
That was then, this is now…
Today I got up early, at 06.00, and read for an hour, feeling really good for the first time in years.
A busy morning, taking out the crap (using my powerchair), doing a little cleaning, and with a fantastic fruit cake just taken out of the oven (made using my Kenwood stand mixer – without my machines, cooking and baking would be beyond me, as it is, neither happens as often as I’d like), and all was going well – until around 10.45). I crashed, and I feel like hammered shit (terrible pain, nausea, weakness), and the rest of the day is probably trashed.
Just in case this is more Addison’s crap (it feels like it might be), I’ve taken an extra 10mg of hydrocortisone (hydro from here on, and in future instalments), in accordance with NICE guidelines. Bear in mind that the NICE guidelines address Addison’s in those who are otherwise fit and well. For people like me – and probably you if you’re reading this – where NICE says increase by 10mg for less strenuous activities, like hiking (from which I assume the buggers never walk anywhere if they think that can’t be strenuous!), I interpret that as “any unusual activity at all”.
I am still finding my way around the vagaries of Addison’s so, initially, there will be unavoidable errors in dosing when dealing with a crash caused by unaccustomed activity. And, of course, it’s almost impossible to know if a crash is caused by Addison’s or by any of the dozen or so other conditions I’m currently host to (about half of which are potentially fatal).
I’m normally capable of only the most minimal level of activity, like sitting here typing, or reading online newspapers. Sometimes even sitting is too much of a challenge, and I have to go to bed, or slob out on the couch. Any increase in activity, then, carries its own risks. That was true prior to Addison’s, which has added several more layers of complexity to the management of the rolling train wreck that is my life.
It’s about half an hour, now, since I took the hydro and I feel rather less pukey than I did, and a bit more alert, so a good call – it was Addison’s.
Pain is still monstrous** but I took Oramorph about 2 hours ago, so it’s a bit soon for more. Not that I give a shit – if I have to have it, I’ll take the buggerdly stuff. No virtue in suffering needlessly.
**My injured leg is failing to heal, and I’m beginning to suspect that I’ve damaged the bone. With my hydro intake it’s possible the bone might be necrotic (bone necrosis is a known side effect), so I’ll have to keep a close eye on it. On the other hand, I’m told that Addison’s can delay healing by a remarkable degree. Time will tell but, right now, I couldn’t spend 4 hours sitting in A&E if you put a gun to my head. I feel bad enough without that!