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.
NB: Under my new rules I consider the following to be safe.
Like most people with COPD I’m extremely prone to respiratory infections. Normally, I tackle these myself as NICE, while paying lip service to GOLD, strenuously refuses to allow GPs to prescribe antibiotics in sufficient strength and volume to comply with its needs. So I buy my own.
However, a couple of months ago I had an infection which refused to respond when treated with my normal Amoxycillin, so I faxed my GP and asked for Doxycycline and, a major miracle, actually got it. This week I accidentally ordered codeine linctus. It’s not due yet and I don’t need it. Since I’ve been taking Oramorph I’ve needed codeine linctus only rarely – when it’s a case of take it or cough until I puke or pass out. Normally it would have been crossed out and a snotty note sent with the rest of my meds but I got it without the slightest quibble. This spirit of co-operation is very unusual and suggests he knows something about my condition that I don’t. Worrying.
Well, for a start it’s taken the hospital 18 years to admit that I have COPD, which first appeared in 1996 but which they’ve consistently denied even as late as last Winter, until three weeks ago, when I was admitted with pulmonary oedema. I am not going to put up with that level of medical incompetence ever again.
Let me be quite clear – I have no doubt whatsoever that I have heart failure. I am quite capable of reading and – more importantly – understanding, the literature on the subject and, of course, I have lived with the condition for 3 years since diagnosis (and probably much longer).
I am not allowed salt.
This is a crime against nature – everyone needs salt.
It’s particularly cruel as many of us with Addison’s Disease crave salt more than usual. What hasn’t been explained is whether this craving is driven by an actual need – I must find out. (I did, see*** at the end.)
In hospital last week, in the heart ward while the pulmonology tossers tried to claim me and the heart people – in whose hands my recovery resided and in whose ward I was – just quietly got on with their thing (I’d have preferred a more hands-on approach, like consulting me before prescribing a drug, Ramipril, I can’t take).
That my heart really is a serious problem is reflected in the fact that the pulmo pillocks have screwed up my meds while announcing no further treatment or support is needed, while the heart people have consigned me to the care of the Heart Failure Nurse service, who are scheduled to put in their first appearance on Thursday. I have no idea how this works yet – whether they will routinely visit to monitor me, in much the same way as the Community Nurses, or whether I call them at need (though, really, if I do need help I need to be in hospital).
I now have one of these:-
A Bodum Stainless Steel Travel Vacuum Mug
Once filled and locked, this thing is leakproof, which is good as on my bedside table (on wheels), it might be prone to falling over. As it’s going to be full of milk, that’s a bad idea. Filled with chilled milk at bedtime, it will hopefully remain cool enough to prevent it going off overnight, so I can use it to take my early morning meds, at 06.00, which badly need a buffer (the red top can be completely removed or the centre can be unscrewed for a drink-through facility) :-
Received wisdom in Addison’s Disease says that stomach ache can be a sign that you need more Hydrocortisone. Personal experience suggests that stomach pain can be a reaction to Hydro, and possibly a precursor to a gastric bleed. Trust me, this is not something you want in your life.
So here I am, happy in the belief that I have my Addison’s under control. I don’t have it licked, you never do, it’s a gift that keeps on giving, but I thought I’d reached an accommodation with it.
I couldn’t have been more wrong.
This past week my nausea has returned, as severe as ever it was. No idea why – that’s something I really did think I had licked, but no. Rummaging through my Addie’s documentation, of which there is a hell of a lot, I discover that “Dizziness, headache, stomach ache, extreme weakness, chills, fever, confusion, nausea and vomiting are typical signs of impending adrenal crisis.”
Finally, I’ve found something that helps me sleep. It’s effects will probably fade, as my old standby, fruitcake, finally has, but for now, it works.
Monday night, did all the usual stuff – sleeping tablets, fruitcake, reading in bed for an hour or so – and at 03.30 I was still wide awake and hurting badly.
Got up, snagged a tub of cottage cheese and a spoon, went back to bed. Ate the cheese and was asleep before 04.00.
Two things – I’m sleeping barely at all, and I’m piling on weight. Both, I believe, have the same cause. Yep, it’s Hydrocortisone again.
I’ve noticed that taking extra Hydro (an additional 20mg a day to counter the stress caused by severe pain plus a diet of antibiotics to treat both respiratory and leg ulcer infections – 1g Amoxycillin, t.r.d ), coincides with feeling exceptionally hungry – not eating isn’t an option, the hunger is an imperative – and also with being almost totally unable to sleep. I’m normally awake until 03.30 – 04.00, by which time exhaustion takes over. Then I’m liable to Continue reading
Depression and Hydrocortisone.
Hydro is, without a doubt, the major current cause of my depression – depression so shatteringly severe it feels positively dangerous.
I’m not normally depressed, but I am prone to Continue reading
Ron's Rants... 