Thread by @RoadsideMum

In light of that bloody article, let me walk you through what is not extreme fatigue...

This morning my ex came to get the children up for school as he now does daily because I can't do that and also do anything else at all in a day...

1.

When I say "anything else" I am not referring to a job, or a social life, I mean ANYthing.

If I had to drive the morning school run I wouldn't also be able to get dressed. I wouldn't be able to take a bath for those 5 days, I wouldn't manage any lunch or dinner.

ANYTHING

2.

Even then, I don't think I would last the full 5 day school week.

So what the fuck am I calling the morning routine then? Do we have a farm to run or something?

I'm talking about a normal get up, teeth, uniform, breakfast, shoes, sign permission slip, car kinda morning.

3.

Today we all had a row. Someone has been lying about tidying their room and bringing out the laundry, and in turn that led to a certain top being unavailable, which led to not being able to attend a certain much anticipated after school event, crying, screaming, name calling.

4.

Evidently RD can't handle this (weaponised incompetence) so I have hauled my arse upright and into the fray and eventually everyone has left the building, late but adequately dressed, if none too happy.

I grabbed a slice of bread and cheese and have had to retire to bed.

5.

When I say had to retire to bed, I can't keep my body securely upright sitting in a dining chair. You know late at night when you have been up too long and you are so tired you snap awake just as you are falling asleep? That, but without the asleep. I am in bed for safety.

6.

A professional is supposed to be coming round at 11am to help with paperwork but because I haven't had the morning sleep from 8.30-10.30 that I rely on, I have had to cancel. I can only process and hold information at tweet-level simplicity. I literally can't do the schedule.

7.

I have to write a 200 word project update today for the book backers, but right now I am using both hands to hold my phone to type this, with both elbows rested in the mattress because the phone is heavy.

Phone isn't heavy. It's me.

The ceiling light is hurting my eyes.

8.

I'd call it a day and roll over now but my fatigued carcass can't digest the Gouda slice that was on that breakfast bread, and the heartburn is searing my throat, it needs a few minutes more.

Fatigue impacts all your basic functions, like digestion, not just the fun stuff.

9.

At 1.30pm, I need to get up, have a bath if I can (maybe, maybe not) get clothing on (pajamas won't do) and do the afternoon school run, which will be worse because we must go straight to the event, where I must wait an hour in the cold, and other people will be looking...

10.

School already expect me to pull up in the car and notify them and not get out the car. This has to be how it is, just breezily wandering in isn't a thing anymore. I parent by the skin of my teeth.

Thank GOD Naughtiest Child cooks. Tonight they will have to, or not eat.

11.

I don't know for sure yet I will make it through the event.

My very best effort will be made sitting in my car if I can, or wheelchair, wrapped in excessive layers, with hot water bottles & sunglasses to hide a lack of makeup.

Can't have make up and be dressed. Too much.

12.

I'll drive home bloody carefully. I am pretty good at knowing when I need to pull over & admit defeat.

Which is why my ex is still on the insurance.

He fucking HATES it when I have to call him and say I can't safely drive, get a bus here and rescue us, but he'll do it.

13.

I'm gonna assume though that we make it home without me totally breaking down.

I will sit in the chair, Naughtiest will cook (has to, or no one eats). We have sausages, so it will be sausages or veggie burger all round, chips and tin-of-something.

Then I'll crawl to bed.

14.

I'm not being figurative about crawling. By the time I get in later, I will be just about unable to walk. After eating- 9/10 chance I won't be walking, even with the help of the furniture.

The kids will pull my jeans off for me.

If they play up, I can't go to them.

15.

Now obviously I don't scuttle round my home like an endless game monsters, it's from the chair to the stairs, up the stairs (can take a while, with rests, on all fours) and into bed- with jeans still on if the kids are in a huff.

And eventually I will sleep.

16.

You will note today has no lunch in it.

I haven't got the energy for that. Not to make it and not to eat it.

Eating is a thing that requires energy I don't have spare in the budget.

As you can see from the current heartburn.

17.

That is not "extreme fatigue"

That is a straight up and down, no ambiguity, clear as you like, classic features in fact, moderate fatigue day.

Moderate.

This isn't even BAD.

18.

People with M.E. who have "extreme fatigue" are dying.

They are laying right now, in darkened, soundless rooms. They are tube fed. They are rake thin. They often have to wear nappies.

They are as fully aware of that as you would be. M.E. doesn't rot your brain.

19.

So that Guardian article today... It's actually an interesting article...

But she does NOT have "extreme fatigue". Not even close.

Even I don't.

This is still moderate.

#MECFS #pwME #MyalgicEncephalomyelitis #meawarenesshour #MEAware #MillionsMissing

G
PS. G'nite. I sleep now.