You know those days where resting isn’t a choice; where what you’re doing isn’t even necessarily resting because you’re lying in bed unable to move. Is that resting or is that simply being too unwell to move…
When I woke up today and realised how I felt my thoughts were “Eurgh I’ve got to do it all again; get through another day feeing like this.”
And people will think that sounds an awful lot like I’m depressed. I’m not. I’m just living a life that’s really weird and different because my body is probably a bit weird and different. And every now and again you have a moment akin to lucidity where you realise this is probably quite gruelling actually and it would be so nice to sail through a day, rather than trudge through it.
I will probably make it downstairs today, but for now I’m glad and grateful that my husband is home. I’d have to push myself pretty hard to get out of bed and make it further than the bathroom. And then we know from experience I’d be stuck down there waiting for the oomph and ability to get back up to bed where it is best for my body to be today.
There’s a new pattern emerging, where if I have a ropier day (yesterday), then the next day will be even harder. No matter how sensible I am. There used to be a plateau of a few days at the same level, but now the dip in function deepens before the plateau sets in and before I return to my baseline.
But I noticed something. This doesn’t feel like a backward step anymore. It just is what it is. A new level of acceptance may have been reached, and without me realising. There will be days like this. Weeks like this. And then there will be days and weeks when it’s not like this; not all the time at least. It is fluid and it fluctuates constantly. And I see now (or at least today) that that is the nature of the beast.
'M.E. myself and I' by Anna Redshaw 