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...

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.


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.

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.

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.

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.

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.

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.

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.

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...

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.

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.

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.

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.

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.

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.

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.

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.


This isn't even BAD.

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.

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
PS. G'nite. I sleep now.

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More from @RoadsideMum

24 Nov
Bacon slow cooker *thing* 🧵

Mainly priced from Lidl

500g cooking bacon 73p (packs £1.45/1kg)
Tin chickpeas 30p
Tin kidney beans 30p
Tin plum tomatoes 37p
100g red lentils 14p (69p/500g)
1 tsp white pepper 6p ( Aldi £1.19/100g Aldi)
3tsp smoked paprika 10p (Aldi 49p/40g!)

Why are the spices from Aldi when everything else is from Lidl?

Two reasons:

1. I can't find the spice prices on Lidl website.
2. I can't even remember where I bought the spices, they just live in the cupboard.

Anyway we are calling this £2 for 4 servings/ 50p each.

Cut bacon into chunks. You could do 2cm cubes, but I'd hack it with cooking scissors straight into the pot, less mess.

Drain the chickpeas and kidney beans.

Add all ingredients to pot.


Pour on enough water to just cover the food.

Smash tomatoes up a bit.


Read 4 tweets
28 Oct
Changes to #UniversalCredit in #Budget2021 see the loss of £20 (#KeepTheLifeline) "mitigated" with a reduction in the UC "taper rate" from 63p to 55p.

Let's look at what that means, who that helps and who that hurts.

#poverty #ukpolitics #benefits #UKPoverty #foodbanks

It means that now instead of 63p being deducted from Universal Credit for every £1 earned, only 55p will be. Meaning claimants in work are 8p better off per £1 wages earned.

That offsets that £20 for some. Who though? How many 8p's are needed to reach £20?

It's actually £250 that is needed in wages every month, to offset the £20 cut. Or to put it another way, that's 59h work a month on the apprentice minimum wage, or 29h on the min wage over 23.

At age 23, if you work 7h a week you should be better off with the new rates?

Read 19 tweets
24 Oct
When I was about 6 or 7 I caught something from playing in sea water with raw sewage in. I was so sick that I was sent to my grandparents to best be attended round the clock. The doctor came every day for a week. I remember banana medicine (anti biotics) and lucozade.

They put me in Grandad's room, with the big bed, because the door was angled such as to be more visible than the other rooms. I don't recall if Grandad got the sofa or went back in with Nan. Knowing Nan probably not. My Nan knew her own mind regards men and their place.

It was days before I could even sit up. Then grandad who'd been watching me from the chair, started reading to me. I heard long articles I couldn't understand about Hong Kong and the "Footsie One Hundred", which I thought was a sport. My Nan chided him "you'll confuse her".

Read 10 tweets
6 Oct
I didn't sleep last night and I haven't settled yet tonight either.

I'm fairly sad for me about the #UniversalCredit cut, but the weight of the sadness for others is vast.

It's similar to getting the news someone you know is terminally ill.

Deaths are coming. 100% sure.

It'll be lonely middle age men, isolated from their last few pleasures in life, by a whacking cut in their income and a whacking rise in their essential bills all at once.

Someone's brother. Someone's Dad.

It'll be keyworkers, subsumed in months of grinding, constant stress, no longer able to handle the abuse on the petrol station forecourts, or the snappy managers, as burried in it all as they are, and it'll be that last fucking Starbucks they were 30p short for that'll do it.

Read 11 tweets
6 Oct
I just saw an article claiming a lorry trailer conversion is a first in the UK. It isn't.

They claim they have built something unique. They have not.

They claim they have created a livable space. I sorely doubt it.

They are raffling the liability for £20/each. I wouldn't.
For the avoidance of doubt:

Lorry/trailer conversions are as old as lorries/trailers.

Nothing unique about it, and only getting 4 berths into 44ft, does not bode well for the planning.

No images of any insulation. No spec.

There are no residential pitches for that.

Any day now it's going to be an imprisonable offence to so much as stop that thing on the public highway, or in a layby, or at an appropriate motorway services...

And it's already not possible to put it on a site for more than a few days unless it's residential.

Read 4 tweets
29 Aug
Not even halfway into the monthly payday cycle, and I am already running alarmingly low on funds. Every fucking month is like this. Every one. I can't even spend what energy I do have on productive steps forward out of the mire because I am spending my mental energy on making do.
It's so much more work to be poor. Imagine you can never replace anything and everything you have was either old or low quality to start with, and you have to juggle work arounds constantly... I'll illustrate...
Imagine you have so little money for food, you now take risks on what's gonna be ok. Stuff you never really liked but it was in the reduced. A past-best-before company your mate rates. Whatever came out of the foodbank last time you had to. Dinner becomes a game of chance.
Read 13 tweets

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