Something I still can’t get used to is how so many people who see me functioning at a decent level, apply the functional version of me that they see for that very short period of time, to the rest of my life.
They see me because I am functioning at a decent enough level. Those moments are *not* a constant state.
Over the last little while I have been well enough to have visitors. And some of those visitors have since asked me, because I’m now doing “better” or “so well” whether I’d like to:
• go for a walk (I haven’t been for a walk per se since 2010)
• go out for lunch (for the most part I am still shielding and am not yet well enough to do lunch except on two occasions where I was a) well enough b) able to sit outside away from all other lunch goers as it was midweek and quiet c) with my Safe People (those who understand my health the best anyone can.)
• have another visit the next day
• have weekly visits (I can perhaps see one person per week/fortnight and don’t like one person to monopolise all of those visits.)
• drive to visit them at their house for a change (can’t drive yet post-relapse and even then it’s very hit and miss.)
These people don’t mean any harm. They are excited and relieved to see me out of bed and seemingly like the pre-2020-relapse version of myself.
But it does get a bit tiresome to remind people that I would if I could. For a long time I took it personally that they so clearly didn’t grasp what I’d been telling them about my health so years. But I’m working on that.
It’s always a case of slowly slowly catchee monkey as the saying goes.
I need a large chunk of time of feeling well enough to do something before actually giving that thing a go.
This life is a regimented one. And although to outsiders my days are free to do as I please and have visitors pop by because of that, in practice life with M.E. is quite different.
[Post written in September 2022.]