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.