By other people’s standards my health is never Good. So it can be hard to convince them what I mean when I say things are Bad.
There are no symptom free days. Not a single one. Nothing even close to it. But it does take a lot for me to brand a day as Bad. Monday was Bad. This week is Bad. And it perhaps feels worse because there is no identifiable trigger. Only 5 days in and I know the course of things well enough by now to know that there is cause for concern right now.
It’s simply not possible to describe the worst of this illness. I do think it would help, even a little, for people to see it in a video or a photo; to see it all.
But the last thing on his mind when the going gets tough is to capture my suffering on camera. When he’s trying to help me up to get me to the toilet, neither of us are thinking “Hang on, set the camera up, so people can see what it’s really like for us.”
No photo can ever portray how bad my M.E. can get. And I know from experience that even those who’ve had to witness it for themselves forget the brutality of it.
Monday was horrific. No other word will do. This whole week has been the closest to how severe things can get for me.
This is not my normal ‘crash’. There’s been no paralysis. What a weird silver lining that is! Of course I am too sore/exhausted/heavy to move but it’s quite different from the paralysis I can get. So the signs aren’t all that reassuring if I’m honest. Because this is like Old School M.E. Debilitation. So weird and sad to be back in this place. Although I have never been well or been anywhere near to even working, I haven’t had solid bed bound days back-to-back for some time. (Mostly, I take to my bed for preventative rest these days; to save up energy or avoid the worst of the Post Exertional Malaise after a certain activity.)
The symptoms are crushing and for him it’s been heartbreaking. In sickness and in heath hey. We know of no other way. It’s a sorry state of affairs when the white noise produced by your noise cancelling headphones is too much to bear.
And yet there’s happiness and there’s been laughter when my personality pokes through the fog of exhaustion and malaise. He’s been exceptional, as he always is. All good relationships have an element of care or caregiving in them. For us, there’s a little more than in most relationships. And right now, even more so.
I never wanted him to be my carer but that’s essentially part of the package when entering into a relationship with me. And it’s where we find ourselves, particularly this week. He’s been incredible. Lifting my legs and swinging them back into bed. Holding my elbows to steady me as I ‘walk’ to the toilet. Or acting as some kind of outer skeleton to help me walk – hard to explain is that one! Holding my drink when my arms won’t move – thank goodness for flexible plastic straws. Checking my temperature. Choosing foods I might be strong enough to chew and swallow. Holding a bowl so I can spit my toothpaste into it while I’m stuck in bed. Arranging for others to Anna-sit when he cannot miss work. He deserves better than what my health offers, but so do I. Covid-risk or no Covid-risk we’ve had my mum come in this week.
All we can ever hope for, any of us in this boat, is that tomorrow may be a little bit easier.
Sending support and solidarity to you all.
M.E. myself and I 
Anna, So sad to hear that things are this bad for you but thank you for sharing, both the frustrations it brings, as well as symptoms. This, although we wouldn’t wish it on anyone, at least lets us know someone understands – without our need to explain.
It really hit the spot when you simply say ‘it takes a lot to use terminology that . . . things are Bad !’ Like you, often need to rest after slight exertion – such as a Birthday nearly two weeks ago and not yet even been able to speak to friends to thank for cards (haven’t even seen cards – hubby read them out to me).
We try to keep things in perspective because there are no symptom free days and don’t even waste energy to explain if someone asks what sort of day but then, is surprised when been in bed all day. One particular friend, actually asks “why” if he learns that. Ironically he’s an ex nurse, who comments he’s glad his wife ‘got out of it’ implying it’s something we can get over – as she did (in months but unlike her, I’m almost twenty years in now). I also share the fact you are conscious your hubby doesn’t ‘deserve’ this – nor do you or any of us but how ever much perspective we put on it (we would do it if the other way round) we still know it doesn’t only impact but dictates our lives. It’s lovely if we have a giggle but laughter is rare, thankfully cuddles are not – even if most days I have to say ‘be gentle’
There is a saying “Today is the tomorrow we worried about yesterday.” I only say that in the hope that, today is a new day so, hopefully, if not ‘pain free’ you can feel a little joy in there. Hope this made sense as typing with sight problems – a little man (inside the computer) reads out every letter. I have so often said when REALLY struggling, if only people could see this they would understand better but as you described, that’s unlikely to happen. Keep smiling, Sending hugs Alison xxx
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Those unexplained crashes are distressing, perhaps because so much energy and time is devoted to trying to keep symptoms manageable. I wish you as much peace from this frustration as possible and more comfortable rest in the coming days.
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