If you were going to declare certain days in my life as Bad, these would be those days.*
Pins and needles type feeling in my legs, but not quite pins and needles.
Feeling like I’m vibrating on the inside.
Fluttering eyelids when they’re closed making it just a bit annoying that I can’t open my eyes for very long.
When a spoon feels as though it weighs a tonne.
A head so heavy, on a neck not strong enough to hold it up.
The room spinning if I’m sat ‘too upright’.
Downstairs being a far-away, distant world you won’t get to frequent today.
Swings in temperature but an inability to do anything about them; even the thinnest of bedsheets is so heavy.
Shallow breathing because deeper breaths require strength.
A body so weak it is moved by each heart beat.
How many times must I have thought to myself “Something is very wrong in my body” and yet no-one will even bother to do a blood test anymore because I have this diagnosis.
And yet, alongside of all this and so much more, I have the knowledge and certainty that so many have it far worse. For they aren’t here, able to tell you about any aspects of their own days.
NB. Not everyone understands the taking or sharing of photos when we feel so unwell; there can be an “When I’m ill the last thing I’d think to do is take a photo of myself!” But chronic illness can be different from short term illness. And for me, there is almost an element of needing to prove to my near-future self that I really was that ill, because sometimes, during easier days, you question yourself on whether that level of awfulness really happened.
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*I don’t actually call days Good or Bad myself anymore. Instead I use Harder or Easier. There’s a post about it somewhere…
M.E. myself and I 