Another assessment – good, and bad in parts…

For those of you who’ve been following my saga of late, things have taken a turn for the better, to be followed by a turn for the worse.

I’ve had a long meeting with the Tissue Viability Service nurse, and a treatment plan has been put together which, I’m told, should fix the leaks and infection in my legs in 7-10 days.

The underlying condition – bilateral lymphoedema – is, sadly, a gift that keeps on giving, so I’m stuck with it. And probably with Continue reading

Patients to be badgered into exercising by GPs…

NICE is apparently going to force GPs to press their patients to undertake physical activity. That will not be well received by this spoonie.

When I was well (i.e., prior to 1986, my last good year**), every holiday was spent backpacking (a sport which has nothing in common with gap-year oiks), as were many weekends, and when I wasn’t doing that I was out every available  Sunday with the Ramblers. I also, more often than not, walked to work and back – I covered almost Continue reading

Addendum to I’ve been lied to…

Working on the assumption that I do have a high plasma concentration of albumin (see last post), starting yesterday I’ve paid closer attention to my hydration – drinking regularly, not just when I’m thirsty – and taking 30mg of zinc, which acts on albumin to reduce its volume.

And today I have had the best, and busiest, day for many months. OK, I’m spoonlessnow, but that’s perfectly normal. What I don’t feel is as if I’m about to die, which has been my default state for the past six months or so after the slightest effort.

I’m also extremely hungry these days – a backlash against the months of starvation presumably. Needs watching though as I’m piling on weight very easily – and every ounce goes on my waistline. Even so, I’m still a shadow of my former, fat, self, but I still need to drop maybe 5 kilos, down to 75.

The question still remains, though – just what Continue reading

I’ve been lied to about how ill I am, and what’s wrong with me . . .

While I was in hospital, my consultant told me that, because of heart failure, my body was flooding with albumin, to the detriment of my circulatory system and internal organs, and no matter what he did, I was going to die.

He lied. (Or, perhaps he’d claim that he was telling the truth, as Continue reading

Chronicles of the Heart, Part 55 – Life with Lymphoedema & Cellulitis…

If, like me (bilaterally in my case), you have the lymphoedema & cellulitis combo, then you know just how badly it can screw up your life – as in you’ll barely have one any longer. I certainly don’t.

Because of the swelling, none of my footwear fits me, nor do my socks, and my trousers simply won’t fit over the bulky absorbent dressings (for those of you unfamiliar with these conditions, my legs and feet leak – as much as 3 litres a day at their worst. Even if I could get shoes or boots on, they’d be soaked and wrecked within an hour or two, and my trousers, likewise, would be wet to the knees.

And just to add to the joy, the Continue reading

The war on pain…

While in hospital I was constantly asked by the nursing staff, at the tedious, every two hours round the goddamned clock “comfy” check, why I claimed to have pain when I was taking “pain killers”. I got very tired, very fast, of explaining to people who should bloody well know already that pain killer is a misnomer. For many, perhaps most, people, most analgesics moderate pain, they don’t stop it in its tracks. Or, at least, if they do for others, they sure as hell don’t for me.

Mind you, my experience wasn’t helped Continue reading

Wheeliedom is upon me…

Probably for the best, too.

I’ve been talking, periodically, about becoming a full-time wheelie for quite a while, but I keep putting it off in the vain hope that things might improve. However, as getting to, and staying on, my feet brings me into sharp collision with the law of diminishing returns now, I believe it’s time to bite this particular bullet.

I got out of hospital almost a month ago, as weak as a baby and, like some  babies, I’ve failed to thrive. I am, admittedly, somewhat more active than the care assessors expected at this stage (they say Continue reading