Since getting out of hospital I’ve been puzzled as to why I feel better than I have for years, but unable to account for it.
Finally remembered that they found my adrenal glands had pretty much failed and filled me up with hefty doses of hydrocortisone over a period of weeks, before switching me to a maintenance dose indefinitely.** THAT’S why I feel better!
**There were two old women sat behind me on the bus one day, both apparently well into their 80s, and one said, in a deeply aggrieved tone “I’ve got to take these tablets for the rest of my life!” I manfully resisted the temptation to turn round and says “Well, don’t worry, it won’t be long.”
I mean, what is it with people and tablets? They announce that they have to take them the rest of their lives, either with immense pride, as if it’s some great personal achievement, or they’re gravely affronted by the imposition. Just get on with it, people, no-one cares.
It’s also why my COPD and ME have both improved. This is something I told my GP years ago when, taking Prednisolone (a corticosteroid), for a respiratory problem, my ME pretty much vanished as, indeed, it has now, but he just didn’t care.
The problem is that steroids are supposed to make ME worse, but for me they’ve always had the opposite effect – just one more thing that makes me wonder if I really do have ME. Anyway, after 27 years the question is probably moot!
On the other side of the coin things are a little darker, as my research into Lymphoedema continues, I’ve finally figured out why the consultant told me I was dying. Even though he got the reason wrong, he was right in his prognosis.
He claimed I had excessively high albumin levels, which would kill me. I researched that, found it was a side effect of dehydration and not remotely fatal. What I had, it turns out,** and probably still do to a degree, is excessively low levels of albumin caused by protein loss in the massive leaks from my legs, a condition called lymphorrhoea***, not excessively high as he said.
If you get the urge to print that web page, be aware that it runs to 51 A4 pages in 14-point Times New Roman.
***This is the name given to the Lymphoedema variant in which the fluid pressure in the limb is so high it simply forces its way through the skin, as happens in my case. And yes, it is as much fun as it sounds.
Neglected, albumin deficiency could still kill me but ensuring an adequate protein intake will remedy the problem now I know about it. As will reducing the leaks as much as possible. Of course, more protein means more calories, which I can ill afford – I need to lose weight, not gain it as I’m 5kg over my target weight as it is. I’ve been fat, I will not be fat again! My ideal weight for my height, as I’ve said elsewhere, is 62kg, at which level I’m positively skeletal. My feasible ideal weight is 75kg, at which point starving Africans stop sending me food parcels. Currently I’m 80.6kg.
The solution, I suppose, is to reduce carbs and increase protein, not to the extent of the Atkins diet, which would be arrant foolishness, but just enough to compensate. Fortunately, we only need a couple of ounces of protein a day, so the calorific burden of, say, doubling that, can be easily compensated for. A simple way of adding protein without much in the way of extra calories, would be to have peanut butter on my morning toast, instead of Clover. True, dunking it in Bovril is probably a bad idea, but not doing so is a small price to pay 😉 .
Adding protein can be very cost-effective too – it needn’t be prime steak, or even meat at all. Peanuts have a very good protein content, as do pulses, grains and grain products, eggs, fish – cheap coley is as nutritious as expensive cod and, for me, tastier.
I also have a tub of protein supplement, bought just before I went into hospital. It weighs 1.6kg and, when I got it, I couldn’t lift it – a good indicator of how hideously weak I’d become.
I’ve also confirmed what I was told when I first arrived in Admitting at APH – that the infection can poison my entire system (and major side effects are malnutrition and protein deficiency – presumably because so much protein-rich fluid was simply running out of my legs). Explains the massive weight loss, at least, in addition to not eating towards the end.
And you know, there are times when I think I might be happier if I had no interest in medicine but, having said that, I’d probably be long dead now if I didn’t.