The Addison’s Chronicles – Part 1…

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.

Spoonieworld reality.

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!


4 thoughts on “The Addison’s Chronicles – Part 1…

  1. dont know what to say apart from 1, your teaching me a lot i never learned in my nursing career, 2. another learning curve for you too. 3. just hope you start getting more good days than bad and dont do too much at once. looks like what you did this morning was what led to the crash. i know its a pain, but next time do the rubbish on a different day to making a cake. i understand that doing only a little means things pile up. jobs pile up and little jobs become big jobs. thats when you need someone who will get on top of it for you. say once a month. i cant remember what,if any, domestic arrangements you have got already. so sorry if ive spoken out of turn there. just take care.

    • One side-effect of the hydro is a greater clarity of thought, so I’m writing more and, I think, probably better than I have for a while.

      Pretty sure this morning was an Addison’s crash as I did eventually improve after taking more. Like most drugs these days, I’m just slow to respond. Thing is, though, I did very little physically. I sat in my powerchair and ran two bags out to the bin. I didn’t even have to carry them as I’ve rigged a harness on my chair to take them.

      Then I made a cake, using my mixer, so no work there either – but still crashed.

      But, no, I daren’t let things build up – I’ve done that – it just gets away from me, so if I have a good day, I have to get the maximum I can out of it.

      Just published another letter to my GP. Addison’s guidelines say I should get 6 months hydro at a time. He said he’s given me extra – when I checked it turned out to be 30 extra tablets! Useless.

      Nope, no “domestic arrangements” for cleaning or anything else, sadly 😉

  2. i saw your more recent letter. you really should not have to be doing all this. bring back the old family GPs. if they WERE governed by money the patients never knew it,.
    do you have any Health and Well-being organisations or groups over there? or centres /organisations for vulnerable adults? My sis and her partner have had a fair amount of help from such groups etc over here,.maybe they can get you whatever help you need re cleaners, etc, or do you find such people a cartload of busybodies? i know some do… but that’s just a suggestion anyway.,

    • I had a cleaner for much of last year – more trouble than she was worth. She couldn’t understand that electronics and water didn’t mix – and I’ve got a lot of electronics – and I had to keep her out of the kitchen completely – she was dangerous as well as useless. She’d leave my sharpest knife sticking blade up in the cutlery rack and the blade is so thin that edge on it’s almost invisible – nearly lost my damn hand! And if she washed the dishes I’d have to wash them again, as she so overloaded the sink they’d come out dirtier than they went in.

      In the end I was paying £10 an hour just to have her clean the bathroom and vacuum the carpet!

      The biggest problem, though, was paying her. I don’t use cash – I use plastic for everything but, of course, she wanted cash and it was just too much hassle getting it.

      Eventually, I had MRSA and she vanished. So I just let her go. And as her brother had MRSA she could well have been the source of mine – no way of knowing.

      Anyway, I bought my lightweight Dyson so I could do my own vacuuming, and the bathroom gets cleaned as I go.

      As for my GP, god knows what’s wrong with him. Whether he gives me six months hydro all at once or a bit at a time, it still costs the same! If I have to, I’ll buy my own – one way or another, I will have the drugs I need – and find out just who the hell I complain to about this loser before he kills me.

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