It’s been only three days since I took to my wheelchair more or less full time, and I have no doubt at all that this is the way forward.
It’s not perfect – my flat is largely unsuitable but I don’t want to move as my neighbours are reasonably quiet – and if you’ve never lived in a flat, you have no idea how important that can be.
There’s another reason, too – I don’t have the spoons to survive a move. My last move, five years ago, wiped me out, and I’m a hell of a lot worse now than I was then.
Well, I’ve spent the afternoon and most of the evening in my chair, and my pain has been greatly improved. In addition, the dramatic worsening that happens every night between 21.00 and 21.30 simply didn’t happen (though it’s setting in now, at almost midnight). For the second day in succession I’ve got by on two shots of Oramorph. Yesterday that was a major battle, today it wasn’t.
History has been made – I’m sitting here, tweeting from my powerchair for the very first time.
Since my surgery, now, isn’t guaranteed to happen wheels are essential. Yep, I know I’ve said that before, but I keep putting it off as there’s no way back once committed.
Today I wrote and published a normal blog post before 09.15. OK, it was just an addendum to the second post yesterday, but I can’t remember how long it is since overwhelming pain prevented me from doing something that used to be the norm.
Today, I tweaked my pain meds, adding more morphine.
I am the owner of a large, and ever-growing, leg ulcer, and the problem is finding a dressing that will absorb the increasing exudate and bleeding, that is bactericidal (I don’t want a repeat of last year’s infection marathon and I most definitely want to stay out of hospital), and does not gratuitously cause me more pain. Apologies for the pic if you’re squeamish, but I find it helps people who haven’t fallen victim to this most foul affliction understand the problem. Two months ago that was two tiny, almost painless, lesions, each the size of a 5p coin. Why it’s now one big one no-one is able to tell me. I’m told it’s a venous ulcer and, indeed, it looks like one. However, it also has the characteristics of an arterial ulcer (pain when my leg is elevated, relief when sitting). So, can an ulcer be both venous and arterial at the same time? Based on my experience, it would seem to. More research needed.
That mantra was very popular with motorcycle designers in the 60s. It’s also a very good policy when putting together a photographic outfit, especially when one is disabled. My current outfit – a DSLR body (Oly E-420), three zoom lenses covering the range from 35mm to 600mm (35mm equivalent), a flashgun, a tiny camcorder, lightweight tripod (yes, I know there’s a downside), spare batteries for everything, and a 7” tablet computer for previewing my pics – all of which is just too heavy.
Things are going to change. I said recently that they needed to and, in pursuance of that idea, I went out last Tuesday, with the support of a friend, to take some photos of wildfowl and whatever else I came across. It was, as I’ve reported, a disaster. I still haven’t fully recovered – it’s taken me three days to write this, I just can’t concentrate and being drugged to the eyebrows doesn’t help – not that the alternative is any better. I could have sworn I’ve written a blog post about this, but if I did I can’t find it and I definitely didn’t publish it. Ah well…
Not done a leg report for a long time – there’s probably a limited market for gross photos!
Things, though, are going very bad, very fast – I have two bleeding and infected ulcers in my leg that are getting worse by the day. The bleeding, I’m told, is “a good sign”. Colour me unconvinced. The bleeding is likely to provide an avenue for infection to enter my system, resulting in septicaemia – in what possible way is that good?
This is what greeted me when I took my sock off.
Two things – I’m sleeping barely at all, and I’m piling on weight. Both, I believe, have the same cause. Yep, it’s Hydrocortisone again.
I’ve noticed that taking extra Hydro (an additional 20mg a day to counter the stress caused by severe pain plus a diet of antibiotics to treat both respiratory and leg ulcer infections – 1g Amoxycillin, t.r.d ), coincides with feeling exceptionally hungry – not eating isn’t an option, the hunger is an imperative – and also with being almost totally unable to sleep. I’m normally awake until 03.30 – 04.00, by which time exhaustion takes over. Then I’m liable to Continue reading
I can’t help noticing that in parts 2 to 4 I dropped the terminal s from Chronicles. Apologies. I can’t do anything about that without confusing Google but, from now, it’s back.
One of the first things I learned about Addison’s is that it slows down healing dramatically, especially recovery from infection, which explained why I had such an horrendous year in 2013.
Additional Hydro would have helped, but as the fuckwit endocrinologist at APH failed to tell me I had Addison’s, and my GP failed to spot the reference in my discharge notes until I poked him with a stick a year later, by which time I’d figured out what was wrong with me myself, that didn’t happen.
What I didn’t know, and only found out a couple of days ago, while poking around the online version of the British National Formulary, is that
This, I hope, will be the last letter I have to write to my GP. I’m writing this because he is challenging how ill I am, and my contention that even something like vacuuming is, for me, on a par with running a marathon for someone as fit as I used to be. I chose the marathon because it’s something most people are aware of, and can relate to on some level. Not, it seems, my GP.
He also – descending to full-on fuckwit mode, because he’s seen me only about 8 times in 10 years, and most of that was during last year’s extended crisis – accuses me of abusing my meds.
I take 16 drugs, about half of them dangerous, plus 10 supplements used as drugs to treat my ME – currently a total of 56 tablets and capsules a day, plus 3 inhalers multiple times. Why the fuck would any sane person want to take more by abusing them?
This, I hope, with the addition of a suitable introduction, will set him straight:-
