I would tell my friends “I’m off school today.”
They’d ask “What’s wrong?” And I would say “I’m tired.”
And even the ones with CP would reply “Is that all?”
And I would feel awash with guilt and anxiety, because if even my disabled friends weren’t experiencing it, then there must be something wrong with me, or I mustn’t be trying hard enough.
It was lonely.
But over time I have realised
That no, that is not all.
That is not all, at all.
Because as I have read so many times since then: fatigue is so much more than being tired.
Fatigue is waking up before your alarm because you’re so overtired.
Fatigue is feeling intense anxiety when you realise you can’t go to work that day, and probably for the next few days.
Fatigue is not being able to relax until you’ve cancelled your transport and informed your PA and your colleagues.
Fatigue is the heavy ache in your shoulders and your legs.
Fatigue is feeling dizzy and queasy.
Fatigue is feeling hot, sweaty and a bit gross.
Fatigue is being dehydrated, but not having the energy to ask for a drink.
Fatigue is when you fall back to sleep with the radio on and you drift in an out of the conversations.
Fatigue is when your body is done sleeping, but you can only sit and scroll on social media all day, because even watching YouTube or Gilmore Girls is too much effort.
Fatigue is being in an uncomfortable position, but feeling like you can’t move.
Fatigue is enduring hours of boredom.
Fatigue is when you have no energy to get dressed for days.
Fatigue is when going from bed to the toilet and back leaves you out of breath.
Fatigue is when holding a conversation for more than a few minutes is exhausting.
Fatigue is when your fingers hurt from holding your iPad for too long.
Fatigue is when you don’t feel fully recovered until after at least a week of good sleep.
Fatigue is when getting half dressed, then fully dressed, then leaving the house are major achievements.
Fatigue is needing seemingly endless patience.
Fatigue is all-consuming.
Fatigue is genuine surprise when you feel human again one day.
So yeah, fatigue is pretty shit
But I can live with it.
I can sit and wait through the crap days,
And it is so much more manageable because I accept that
Although I still feel a little guilt
That I don’t need to,
Because my body and mind are worthy of rest,
And no that is not all.
That is not all, at all.
*Banner Image artwork by Hannah Ensor (2014) Go and check out her stuff, it’s awesome! stickmancommunications.co.uk