On Wednesday morning, the nurse was horrified by the state of my legs, and phoned the GP surgery to tell them I needed an urgent home visit.
I didn’t get one – I got a phone call instead.
In three years none of my GPs have ever seen my legs – they refuse to look at them because, to quote one of them “They’re horrible!” – I wonder what they think it’s like to have to live with them? With the blood, the pain, the suppuration and the stink? They have no real idea of how horrendous that is. And they sure as hell can’t comprehend the pain.
Anyway, at least I got the senior partner, with whom it’s possible to have a sensible conversation, on the phone, and he sent antibiotics round – Ciprofloxacin – arriving a day later than promised** by which time my left leg had burst, paving the way for invasion by opportunistic infections. I’ve no doubt that my equally swollen right leg would have burst had it not already had a gaping hole in it (the ulcer).
**I’ve just been on to the pharmacy chasing up my main morphine script (the surgery tell me that it’s been awaiting collection by the pharmacy, which is in the same building, since yesterday morning! The pharmacy say they’ve been in half a dozen times and it wasn’t there – you really couldn’t make this shit up.
The leakage – high-protein lymphatic fluid – requires a high-protein diet to compensate for the losses, and luckily I have just made a high-protein version of Caldo Verde, which you can find here.
Why has my Lymphoedema returned so dramatically? The blame rests squarely on the ambulance service who, when evacuating me to hospital recently, refused to take my wheelchair, claiming lack of room in the ambulance (in the event there was ample room**), and only slightly less so on the hospital, where I was refused permission to leave for half an hour, once I had a bed, to come home and fetch it. As I had no money and no phone I needed them to send me home at their expense, though I offered to reimburse them. In future ample money will form part of my hospital kit. I will not be trapped again.
**I am, by any measure, a small person (165cm tall with, these days, no muscle mass to speak of). My manual wheelchair was made to fit me and is equally small. It also folds. It could have been taken in the ambulance, there is no excuse.
So, in hospital I was forced to walk to the toilet a dozen or more times a day (the frequency caused by my diuretic plus diarrhoea from the antibiotics), and asking to be taken, or for a bottle or commode, would, as I know from experience, have resulted in an inordinate delay – not helpful when my ME causes double urge incontinence. And it was the walking that caused my legs to swell again (at home I’m a wheelie), until Wednesday night, when the pressure finally proved too much and broke through.
Oh yes, and the fuckwit doctor referred to in this post told me that because I could walk (though very slowly, with crutches and only with extreme pain), I really didn’t need a wheelchair! I asked her if she would willingly subject herself to pain that was so far beyond severe it was another universe, when there was an alternative. No answer. I don’t think she even understood the question.
And some of you wonder why I fucking hate doctors!