Is my M.E. really Addison’s Disease?

 

The more I learn about Addison’s Disease the more I’m convinced it’s been creeping up on me for decades. Steroids, taken for my respiratory problems (COPD since 1996), have probably slowly trashed my adrenal glands. Taking steroids causes the adrenals to reduce their cortisol output until, eventually, they stop entirely, while also ameliorating the more dangerous effects of adrenal failure, aka Addison’s Disease – it explains so much that has no other explanation but which has tended to be written off as just more ME/CFS crapola.

Consider the timeline:-

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Why I can’t change GPs…

People keep asking me why I don’t change GPs, and I’m getting awfully tired of trotting out the same information time after time after time.

So, this is why.

First, changing GPs is no guarantee that I’ll be better off – it’s very much a leap in the dark.

And I readily admit that I am an expensive patient – I take 16 drugs and I need more for my Addison’s (Hydrocortisone is absurdly expensive), and at one point last year the dressings for my legs cost £45 a day (and might well do so again). Now, when every doctor is counting the cost of everything, I might find it very hard to find a GP to take me on. Continue reading

Sleep deprivation and other buggeration…

I’ve bemoaned the fact that I seem to be losing my creativity – yep, even a fact-based blog takes creativity – the words don’t write themselves you know.  😉 There are also severe memory problems.

Today, though, after an extremely rare night’s sleep (the past couple of months, in hospital and here at home, sleep could be measured in minutes, not hours), it occurred to me to do a little online research into sleep deprivation. And what do you know, my creativity problems – the impairment of my intellect and of what I choose to call, in a nod to the late s-f writer Fritz Leiber, the wordmill in my head – could easily be laid at the door of sleep deprivation, as could my hole-riddled memory.

It’s possible that I’m Continue reading

My first week of liberty…

I’ve been out of hospital a week now (feels like much longer), and all things considered, I think I’m doing pretty well in such a short period. Still profoundly weak, and very bad on my feet, which is hardly surprising but, more worryingly, prone to falling asleep in the evening and missing vital meds (I have alarms set – they’re not waking me). At least I seem to be in recovery mode rather than just treading water as I was in hospital.

Meds have changed focus too. First shot of the day is 16 tabs and caps, with 7 more top-up dribbles of much smaller doses every 6 or 8 hours – prior to this the distribution was more even throughout the day.

Seems to be working, though, as I tend to peak in the mornings now**, rather than Continue reading

A Look into the Darkside of Life With M.E.

I’ve been trying to decide whether I should publish this all day. I still don’t know if it’s wise, but what the hell.

***

Last Friday, I had a very good day, didn’t feel too ill, pain bearable, nausea minimal – I could get to like that.

Saturday I felt appalling, so desperately ill and hideously nauseous that I came within an ace of killing myself – and no, that’s not hyperbole. I just wanted it to stop, I didn’t care how. If it hadn’t begun to let up about then, I wouldn’t be here bitching about it now.

And it was, I’m sure, also the fact that I managed to externalise it (on Twitter), and get some perspective, that hauled me back from the brink, and I apologise to anyone whom I worried/scared at the time.

Looking back at Friday night reminded me that Continue reading

A day in a life with chronic illness and disability…

There’s a recent trend for chronically sick and disabled people to describe their lives online, in an effort to make the public, the DWP, and Atos, understand what life is like with a chronic, incurable condition – or conditions, quite often. In no particular order, the biggies are ME/CFS, COPD, O-A, FMS, heart failure and aortic valve calcification/stenosis, tachycardia, hypertension, plus a raft of less serious crap.

So, this is a look at what my average day entails, always assuming I’m not well enough to be able to get out to the pub (increasingly rare), or able to break the monotony by being well enough to cook for the freezer, because Continue reading

The uncaring side of health care…

Still totally screwed after my hospital appointment on Monday (covered here).

While the appointment with the consultant went well, the expedition half-way across the hospital to the Pathology Lab massively exceeded my normal walking ability, with which I was initially pleased – in that I could do it at all – until the after-effects set in.

Now, and for most of this week, aside from the usual suspects Continue reading

Follow-up to My life is FUBAR – a small, but vital, improvement…

I wrote about how grim things had become yesterday, and that I was in the grip of seriously worrying depression. Well, I’m happy to report that things have improved somewhat.

Oh, I’m still depressed, but the pull of my suicide kit, from its hiding place, has weakened a hell of a lot.

I have a suicide kit because, the way my health is going, there will come a point, maybe sooner rather than later, when I will become a burden to myself and/or to others. At that point I’m stepping out. I’ve already written about that before, at length, and I’m not going to do so now – just setting the scene, as it were.

I’ve managed to come to terms – to a Continue reading

My life is FUBAR…

And I have no real idea why.

There is, though, something very weird going on in my life right now, way beyond even the normal vagaries of the usual suspects (ME/CFS, COPD, OA, aortic valve calcification and heart failure are the biggies). At the risk of being accused of melodrama, even waking up in the mornings has come as a surprise the past few days –I am, quite seriously, not expecting to. Not that I’d know if I didn’t, of course!

Last Monday I was extremely ill, and profoundly, almost suicidally, depressed – no, that’s not hyperbole. So bad that I was forced to cancel a cardiology appointment I’d waited 8 months for (still waiting for a new appointment, which they’ve promised to send ASAP, after I pointed out I might not have another 8 months).

Yet, on the Tuesday, I felt Continue reading

A word of warning for those with ME/CFS – don’t get too ambitious…

You’d think I’d know, after 26 years, that I can’t take liberties with my ME/CFS, not to mention all the new, heart-related, crap. Yeah, right!

The thing is, I’ve been wanting to make sausages for a few years now, but hadn’t been able to put together the two consecutive good days it needed (yes, IDS, that’s what being chronically sick means out here in the real world, you lying sack of shit!).

I first wrote about it on March 23, 2008 and I’ve only just been able to do it, and then only by saying bugger it, and getting stuck in, regardless of whether it was a good day or not.

So, last Tuesday, Continue reading