One of the most difficult things to deal with when you have M.E. (or any invisible illness) is other people's perception of it and their response to it.
I'm ashamed to admit that years ago, before I got sick myself, I went to university with a woman who had M.E., she had special permission to put her feet up on the sofas in the refectory if she felt she needed to and I'll be honest- I wasn't convinced! We were all frazzled - couldn't she just push past it?
Now, I find myself in that same boat, I cringe at my lack of understanding towards that poor woman and although (thankfully) I never voiced that opinion to her, if I ever saw her again I would offer her a hug and apologise.
The truth is, the overwhelming and complete fatigue you feel with M.E. is absolutely not something you can 'just push past' and it is also definitely NOT a reflection on a person's strength of character (in fact if you are dealing with this - hats off to you- you're a super hero).
I get that it's very difficult to imagine this level of fatigue if you haven't actually felt it for yourself. I once read a description on the internet that said "imagine you've got the worst flu you've ever had, now add to that the worst hangover you've ever had, then imagine you ran 10K the day before on top of that - that's how a crash feels!" - It's not something you can push through but people see you when you're well and think - there's nothing wrong with her, she's just lazy and weak minded, how can she look so well and yet claim to be so poorly? This is the paradox of M.E. - If you can see me, then I'm well enough to be seen and if you don't see me, well maybe there's a reason for that.
So, say I'm having a good day, like yesterday, here's a pic of me, smiling away in the Winter Gardens at Sunderland;
Though tired, I was wired with adrenaline at being out of the house and I felt great. We were out of the house for 3 hours in total, 1 hour and 20 minutes of which was spent in the car, so that's just under a couple of hours, slowly wandering in a nice museum and garden. We deliberately went early morning on a weekday so I wouldn't get anxious and overwhelmed by crowds of people and the trip went well. Despite this, a few hours after we got home a heaviness descended, giving way to tremors, dizziness and intense fatigue that sent me off to bed.
Fast forward 24 hours and the effort of yesterday's small exertion means today looks like this;
Stuck in bed, unable to move around the house, my whole body is sore, everytime I get up I feel dizzy and heavy brain fog means I'm writing this blog in tiny bursts, with rests in between.
This isn't the worst crash I've had by any means, and I knew ahead of time that yesterday would set these symptoms off but after a month at home avoiding Christmas crowds, lights and noise, I really wanted to go somewhere and so I made that choice. If I rest and be sensible, I might be back on my feet in a few days. If I try and do too much, I could make myself ill for weeks.
2024 saw me out of the game for weeks at a time with no reprieve so there's no weakness of character here - only a sheer determination to carve out some kind of a life that's livable while battling M.E. at the same time.
So, a picture might paint a thousand words - but it never tells the whole story!