The surgery to amputate my right leg, which I’d hoped would have happened by now, clearly isn’t going to, not least because my surgeon has chickened out (while absurdly trying to blame me for “changing my mind”). That is simply not true.
Asks the Independent. Er . . . Yes.
I’ve been a wheelchair user for 29 years. Occasionally, at first, full-time these days. I’m typing this from my chair. Which isn’t really germane – just saying.
Let me say, up front, that I have no objection to able-bodied people offering unlooked-for help – just so long as they accept that it’s my right to politely decline that help if I don’t need it (sometimes I do need it, we probably all do occasionally, if we’re honest with ourselves). I also reserve the right to tell them to fuck right off if they become insistent.
I treat offers of help with the same good faith in which I assume they are made, and if I decline I do so politely. But I expect that to be the end of the matter – get pushy at your own risk.
For some years I have been experiencing bouts of Pulmonary Oedema, though I had no idea that’s what it was, I just put it down to more COPD buggeration** – until the day it almost killed me.
**It’s primarily a symptom of heart failure, which I also have.
At that point, once I got out of hospital, I asked my GP to prescribe Salbutamol and Atrovent nebules, as that’s what the paramedics and the hospital use, my idea being to nip the moderate attacks in the bud and, hopefully, prevent severe attacks either hospitalising me or killing me. It took 8 months and another emergency hospital admission before that was successful.
I’ve finally managed to get the rucksack that I mounted on my manual wheelchair packed and ready to go. It contains sufficient for a two-week hospital stay – longer than that and I’ll have more to worry about than clean clothes. There’s two sets of PJs (the type with shorts as my legs will leak and soak long trousers, and short sleeves to accommodate seemingly endless blood and BP tests), plus toiletries, a dressing gown (I’ve never yet been in a bay that wasn’t frigid at night), and a whole bunch of leads and chargers for my electronics. And I still have room for more, which came as a surprise, so I might add another set of PJs.
But first, a little backstory. There seems to be almost as many variants of M.E. as there are people suffering from it. My own particular brand of hell, for the past 30 years, has meant that I crash in the afternoons and, since the mid 90s, that crash, I figured out, is inextricably linked to food. If I ate lunch, I’d be, at best, semi-conscious for the next 4 or 5 hours.
So I stopped eating lunch.
The soup will be puréed so no need to be obsessive about cutting up the veg**. For a veggie version just omit the chicken cube and the bacon.
**But see Update footnote.
This afternoon I stood up from my wheelchair to go into the kitchen (making soup – see the following post tomorrow) – and promptly greyed out and keeled over backwards.
Apart from the injuries to my back and pelvis from the fall (mostly bruising as far as I can tell, though a similar fall some years ago resulted in a hairline crack in a pelvic cartilage which, while not hugely painful, creaked horribly whenever I moved – at least there is no sense of a break this time).
What follows is yet another letter to my GP sent two days ago. For new readers not aware of my history, it’s self-contained and self-explanatory. It refers to my most recent hospital admission with another severe bout of Pulmonary Oedema, and my encounter with a doctor who, choosing to ignore 19 years of evidence** has decided, based on no new evidence or tests, that I don’t have COPD.
**Not to mention the 49 years prior to that of bronchiectasis and asthma, chronic bronchitis and pneumonia, that virtually guaranteed I’d develop COPD.
The result was that today I finally got the Salbutamol and Atrovent nebules I asked for. The hospital uses them together to treat Pulmonary Oedema – I want to do the same thing at home in the hope of avoiding (a) winding up in hospital, or (b) dying – a very real possibility, as you’ll see.
… and also avoiding further damage to my legs (there is no doubt in my mind that the devastating resurgence of Lymphoedema was caused by being deprived of my wheelchair for a week by the ambulance crew who refused to transport it).
Originally the chair was set up to carry a holdall in front of me. Since the growth of the ulcer on my right leg, and the return of Lymphoedema and subsequent bursting of my left, that’s no longer feasible (way too painful and potentially damaging). Add in the dangerously unhelpful ambulance crew who refused to transport my small manual wheelchair (and who also connected me to an oxygen bottle they’d forgotten to turn on!), and it all needed a rethink.
This is it:-
Trigger warning – suicidal drug side-effects.
My GP prescribed Ciprofloxacin a few days ago to treat potential infection of my resurgent bilateral lymphoedema.
It damn near killed me.
Reading the Patient Information Leaflet (PIL) and the Cipro pages, particularly those covering side-effects and drug interactions, at Drugs.com showed why.