365 Days Of Trying - Day 44

A Crash Day.

Trying to explain the sheer & utter exhaustion when I’m hit with an ME/CFS crash (a relapse of the symptoms of my condition) is always really difficult for people who don’t suffer with some kind of impairing illness or disability.

Just to give you a taste though, It took me over an hour to write the above paragraph.

It always hits me when I require the energy and focus the most.

I need an administrative Carer to be chasing the DWP, Westminster City Council (WCC) Rough Sleeping team, lawyers, WCC Adult Social Service, Charities, the list is endless and of course ironically it is these very organisations that I should be getting that very assistant from.

So publishing this substack is going to be the achievement of the day.

Pathetic isn’t it.

But let me help you grasp what it’s like to suffer with this disabling condition. Think about the worst time you’ve ever had the flu. You'll remember the weight of your muscles, the pain every time you tried to move, and the sheer and utter exhaustion trapping you in bed for days often to replete to have the energy to sleep.

But imagine you’ve had a few hours, woken up startled at 3am in the morning, disorientated, discombobulated, incoherent and unable to think… Are you there? Can you remember?

Good.

Now times that experience by ten and you're in the realms of where I am right now.

Then imagine trying to write a coherent substack..

Get the point?