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 I’d pigged out on carbs (I’ve not got to sleep before 03.30 for weeks, up again at 06.00), and carbs help me sleep), and I’d also added some innocuous supplements (just B6 and zinc**), to my early morning meds.

I knew the carbs would give me a hangover. What I also knew, but had forgotten, was that adding supplements to my morning meds rendered something in the mix toxic. No idea what, but the result is horrendous nausea. I’ve been taking the same combination for 20-odd years with no ill-effects, but lately it’s been making me so very ill I stopped the supplements – until Friday night, putting my meds up for the following morning, when I forgot. Added to the carb hangover, and higher than normal levels of pain that day, I was done for. Almost literally.

**Part of the buggeration of ME is a susceptibility to mouth ulcers, and zinc helps considerably with that; B6 is to counter the deficiency, caused by some of my COPD meds, which triggers depression if not treated with oral B6.

Disabling bouts of nausea are nothing new of course (though my heart condition adds its own nausea to the mix now), they’re part of the ME package for many people (FMS and migraine sufferers too, I think), and by the time the eighties ended, I’d exhausted the entire anti-emetic pharmacopoeia – nothing worked for more than a few days. Until I cottoned on to ginger.

Ginger is very good for nausea but the wine, because I don’t actually like it, is the only form I can guarantee being there when I need it. Crystallised ginger is excellent, but I love the stuff and it gets eaten as fast as I buy it, likewise pickled (aka sushi), ginger. Ginger’s not a cure, but it does make the difference between wanting to do anything to end the nausea when it’s intolerable and, with bad grace, being able to put up with it. Most of the time, anyway, but not Saturday.

I know a lot of people will think, “Oh, we all feel sick at times,” but the thing about such extreme, disabling, nausea, unlike pain, is that you simply can’t learn to live with it – every time it flares up is a fresh insight into the uttermost depths of Hell and, I’m sorry, but if you haven’t experienced it at first hand, you can have absolutely no understanding of how soul-destroying it really is.

But try…

Imagine, if you will, being devastatingly seasick on top of your worst-ever hangover, while also in the throes of a severe bout of flu, and imagine that going on and on, with no end in sight, during every waking moment, and even haunting your sleep too – and you won’t even come close – but that’s the daily reality of life with ME (or FMS and migraine), for far too many people, including your humble scribe, in addition to the pain and exhaustion and all the rest of the crapola.

It’s no wonder that people enduring such suffering feel suicidal; the miracle is that so many manage not to take that final step.

For those of you still unable to comprehend the fact that life can become too horrendous to tolerate any longer, I offer you a couple of posts I wrote on the subject – do, please, read the comments too.

Only the staggeringly immature could believe suicide is the coward’s choice…

Assisted suicide – the view from someone with a vested interest…

One final word – this is not a suicide note – I don’t want anyone getting the wrong idea. I’m simply trying to explain what’s happening here, and in particular, last Saturday.

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5 thoughts on “A Look into the Darkside of Life With M.E.

  1. I understand your need to express this and also the fine line between being able to go on. I don’t have the nausea and am so thankful for that – I have enough to send me over the edge without that! I end up the other way having to sit on the loo in the small hours while in awful pain. Life can be pretty unbearable most of the time with illness and disability – but we can only hope that we always have that “something” to stop us crossing that fine line. My “something” is my husband and my animals. I’m so lucky that way.

  2. I can fully understand what you feel and can empathise with you when the situation gets totally out of hand.
    I dont suffer from nausea or ME and although I have always worked with a client group who need support of some kind, I could not imagine that anything could lead to suicide!! how ridiculous is that.

    I have now been in some form of pain for the last 4 years, ranging from being there, to unbearable, making me want to cry when I know I have exhausted the maximum medication I have for the day.

    So yes I can now fully understand why someone would want to kill themselves, just to stop the pain!!

  3. I get the daily nausea and it is the pits. It’s worsened since the autonomic neuropathy flared up five years ago and that has changed everything with the ME. I would rather have the nerve pain than feel sick. I take peptac peppermint to take the edge off as long as it’s not near meds time. Bicarb sometimes helps as it’s mainly belching that helps shift the problem. I hope the ginger continues to help. I like the Rochester Ginger that you can get in health shops, it’s got more flavour than most ginger drinks.

  4. Hi Ron, when my sickness is really bad I take Metoclopramide 10 mg, clears it almost straight away :) I dont like taking them,, but have to when its ,as you said, really bad… :)

    • Hi Darcy,

      Glad it works for you but for me, there’s a risk that it would make almost everything that’s wrong with me very much worse. As has been reinforced lately, I have to be very careful what I add to the mix.

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