Lymphoedema sucks, is painful and also dangerous. It could cost me a leg. Or two. Or it could kill me. And even if it does none of those things – well, except pain, that’s always present – it will still make my life insupportably miserable.
You’d think, then, there’d be a system in place to minimise the impact of this appalling condition on the patient. But you’d be wrong.
I need compression socks. The immediate reason for this is that lymphoedema produces “blisters”. They have a technical name – no idea what it is, but blisters is what they are. Most of the time they show as a flat, unpigmented, circular patch on the skin (mine do anyway), or they can be brown. And – of course they do! – they hurt.
Worse than that, without warning they can fill up with fluid, swell to the size of a pool ball, burst, and spend the next few years leaking prodigious quantities of lymphatic fluid and getting infected. Just one – and I had a whole crop at one point – but just one, on my right leg, leaked over 3 litres of fluid a day, every day, for almost 2 years. It is, I believe, just one of the reasons I almost died last year.
So, not unreasonably, I want to stop it happening again. I have a LOT of these blisters, dormant at the moment, and I want to keep it that way. What will help with this is knee-length compression socks. They’ll serve a double purpose, providing physical protection against the risk of them being abraded, and also preventing them from swelling and bursting. Who knows, maybe they might even reduce the pain! Can I have a prescription for them?
No I fucking can’t!
The reason I can’t is that I refused compression – except I didn’t. My legs have been compressed twice, and twice it caused a massive deterioration, the second time because they compressed a leg that was infected – WHICH YOU DO NOT EVER DO! And the infection was probably MRSA, diagnosed not long afterwards.
I pointed that out, so then I couldn’t have a script because I hadn’t had my circulation checked. I haven’t done that because when my leg was like this:-
my vascular consultant wanted me to undergo an ultrasound circulation test on my legs that even the hospital warmed me was going to be painful and result in bruising – and that’s on a normal leg. On one like mine it would have punched holes in my flesh, because on large areas of it there was no skin.
I wrote to the consultant – the same clown who ordered me into compression with an infection – explaining in great detail why the test wasn’t going to happen (even now, it would be unbearably painful), and pointing out his error in ordering compression when I had an active infection. I never got a reply from the useless piece of shit. Not even a defence of the compression, which speaks volumes.
I did have a follow-up appointment with his nurse. I asked for late morning, they gave me 09.30. I told them it was impossible and, hey, on the day, it was. So I got dumped from the clinic. As all they had to offer was compression – and I have proven absolutely conclusively that this was the wrong approach – I wasn’t bothered.
Now, though, apparently I can be left without support socks, with all the associated dangers, because I complained about an improper procedure (infected compression), and refused a diagnostic test which would have harmed me.
Doesn’t that give you a warm glow?
It fucking infuriates me, and makes me wonder how much of a part my complaint about the nurses’ repeated failures to show up is also playing in this.
So if I want them, I have to buy them. Socks that are lymphoedema-specific will cost me £20 to £50 a pair. Flight socks are more affordable, at £14 a pair from Boots, who currently have them on offer, second pair half price.
The Boots web page is hedged about with caveats, but I’m confident I know what I’m doing here and, let’s face it, that confidence has served me well so far so I’m not about to be riddled with self-doubt now!
Watch this space…