Baseline – the level at which your daily energy supply allows you to do certain activities, each day, with the minimal amount of suffering during or afterwards.
It seems my baseline is now at a level that allows me to get out of bed by 11am and stay out of it for the majority of my days.
Most days I am also able to get dressed. Some days I can even have a shower before doing so!
I can get myself a cereal bar out of the cupboard. So that’s breakfast sorted. I can often boil eggs or heat soup for myself. So I don’t tend to starve at lunch time.
I can watch an hour or two or television in the daytime while Mr Tree Surgeon is at work.
But that’s about it and I am at a loss as to how to fill my days with more. That is, without suffering for it afterwards.
I am very rarely able to sew, and each time that I do, I suffer more than you’d imagine.
Reading has the same effect as sewing does, although it is lesser.
Visitors are lovely but scarce and again the stimulation of having company and conversation cause suffering afterwards.
So what am I to do? Or rather what are we, the sufferers of this wretched and wicked illness, to do?
I cannot go out for a walk. I could scoot round the block but again it requires concentration and is not something I could do daily or even weekly sometimes.
I find myself surfing social media some days for want of something more exciting to do. More exciting than just sitting!
But as everyone else goes back to work about the Christmas holidays I can’t help but feel a little flat that the majority of my days are spent doing very little. And yet I am so lucky that my days are as ‘full’ as they are because once upon a time, not so long ago, they weren’t.
5 thoughts on “Monotony ”
Hi. I just thought the above post was such a true view on what our daily lives are like. I hope you don’t mind me linking to it from my ME website at http://www.York-ME-Community.ore. Take care.
Thank you Bill
❤ have you heard back about a social services care assessment? I just wonder whether some help with food and maybe personal care (even if it's just getting the clothes out ready for you) might help you save some energy for other things?
My day tends to be filled mostly with the Internet but I tend to boom and bust a bit. I'm trying to diversify it a bit. I've been having a tricky few weeks and finding solace in some guided meditations on insight timer.
I’ve had my OT assessment and need to chase up the care one. That’s what we’re hoping for – help with the ‘basics’. I have family and friends doing it at the moment. Have a blog post coming on it.