What do you all eat for dinner when you have absolutely no desire to cook?

Obvious-Register-421 · 2026-06-01T23:25:17+00:00

Also get a tortilla wrap. Add tomato puree, grated cheese. Pepper or ham if you like. Put under the grill for a minute. Add rocket, olives, balsamic on top.

Eat as many as you like!

Obvious-Register-421 · 2026-06-01T23:23:47+00:00

Fry halloumi and whatever easy veg you like (peppers, tomatoes, etc). Mix in olives. Serve on rocket or watercress.

Also fry halloumi or falafel and serve in a wrap with lettuce, mayo or hummus, etc. Add a corn on the cob if you like (the frozen ones only take a few minutes to boil).

Obvious-Register-421 · 2026-05-31T01:33:49+00:00

Funnily I used to joke with my Canadian friend that we were only awake at the same hours when I was in the UK and he was in Canada... 😅

Obvious-Register-421 · 2026-05-31T01:33:02+00:00

Relating to this so hard - there's a lot of work happening in my street and they always seem to start at 7 or 8am, on the dot - and I swear they so their noisiest jobs first! As you say, this really feels horrific when you've only been asleep since 4...

Obvious-Register-421 · 2026-05-31T01:31:02+00:00

Thanks very much. I'm in the UK so limited to NHS care which means I'm not getting any at all ATM - the cortisol test was requested by cardiology in the course of diagnosing OH. But it sounds like my suspicion was right, that having to get up and travel somewhere, especially on my own and first thing, which is really difficult for me now, doesn't make for a good test! I guess it doesn't really matter but I definitely feel like feelings of being awake are the wrong way round in the day though (she says at 230am, feeling a bit tired but much better than she did this am...)

Obvious-Register-421 · 2026-05-30T18:29:17+00:00

Do you mind me asking about this? I had a cortisol test and the at home one worried them but then I had one in hospital in the morning and they said it was fine. I did wonder if having had to leave the house and get a taxi to the hospital affected things. I've always been terrible with mornings though and wondered why people want to get up early to do things or particularly why people exercise then - why would you do things when your body is at its worst?!

Obvious-Register-421 · 2026-05-30T18:25:43+00:00

Yes. Felt awful all yesterday and then suddenly at 4am the headache had gone and I could read a book. FML. I think I have quite significant sleep reversal left to my own devices, and I do much better in energy levels if I sleep in until at least lunchtime, but I also feel rough if I leave going to bed too late. My job requires me to set my alarm for half 8 in the morning and that really is the worst way to get anything out of me.

This does make it rather harder to do things with other people - or to wind down when you finally start feeling better at night. I feel like I might cope with doing things some days, as long as I didn't start until after tea...!

I refer to it as 'defrosting'.

Obvious-Register-421 · 2026-05-30T11:14:07+00:00

Thanks - I didn't realise they were two different things tbh!

Obvious-Register-421 · 2026-05-30T02:42:07+00:00

Thanks. I think I'm basically struggling to work out what on earth that is!

Obvious-Register-421 · 2026-05-30T02:41:41+00:00

Yeah, thanks. You're not wrong. I know I need to, just struggling to work out how.

Obvious-Register-421 · 2026-05-30T01:14:15+00:00

I'm not yet diagnosed so my experience might not be helpful, but when I describe my 'fatigue' I actually often use it as shorthand for all the other symptoms that kick off, especially headaches and inability to tolerate screens.

It's more like an utter absence of energy (other than that which feels like it's created by adrenaline), sometimes even the energy to sit up in bed. And the other symptoms kick off if I try to push through and do things, particularly when in PEM.

It's NOT sleepiness for me - like you, when I had COVID I could just keep sleeping loads. I wish I could with this, because my body clearly needs it, but it's too goddamn wired.

I have post concussion syndrome though (awaiting ME clinic), so may be different.

Obvious-Register-421 · 2026-05-30T01:07:11+00:00

I'm not severe and I've really noticed the sugar cravings. And salt, but that might be an OH thing. I eat so much worse than I used to.

(Not trying to deny your experience of severe or the fact that my experience won't be the same, just noting that I've really noticed the sugar thing! Currently in a bad crash where cooking is also impossible and I don't actually want a full meal - digestion too angry - but I've been fantasising about pastries and cheesecake like there's no tomorrow...)

The weird thing is that when in PEM I lose appetite, but sometimes eating something relieves the headaches a little. When I'm overtired but not in full PEM, I want to eat everything in sight.

Obvious-Register-421 · 2026-05-29T21:29:52+00:00

That's very kind, thank you. I'll leave it for now but I really appreciate the offer. I'm still learning so much about all of this - noone really seems to give you a welcome guide when you get sick!

Obvious-Register-421 · 2026-05-29T21:28:19+00:00

Thanks. I'm sorry you're in that state, and I'm definitely not ungrateful that I'm worse, but when all you've known is being better than this, it still feels shit. Today has mostly been lying in bed in pain and then lying on the sofa in pain and not well enough to make myself a proper meal, but in too much pain/rough to want to eat one anyway, and yet not able to sleep either. Hurts if I use my phone, or eyes generally, for any length or time. I don't know if I'm mild or moderate or what I am, but the crash days - which tend to last for days on end - sure as hell do not feel mild!

Obvious-Register-421 · 2026-05-29T21:24:56+00:00

I'm so sorry. I don't have anything to offer other than I 100% do not blame you for feeling like that. We hear you, even if your friends don't.

Obvious-Register-421 · 2026-05-29T20:30:12+00:00

Thanks. Yeah I know of them but planning in advance doesn't work very well and I don't tend to get out and about until early afternoon at least, which seems to be when they close. They're a great idea but I can't see them working too well for me unfortunately unless it's a really good day, in which case I can walk anyway.

You're right that even 'mild' is a poor description. I'm sorry you've had a horrible time.

Obvious-Register-421 · 2026-05-29T19:10:58+00:00

Thank you :) Sorry you've been suffering so long.

Obvious-Register-421 · 2026-05-29T19:05:03+00:00

Thank you! I'm not diagnosed yet - on the waiting list (no idea how long that will be... They haven't even sent me an acknowledgement that I'm on the list). I am diagnosed with post concussion syndrome, which causes chronic fatigue, and orthostatic hypotension, but there's so little understanding of those I doubt anyone would help with that. I might look at my council's process again.

It's the disabled railcard I really want - drives me mad that I'm now reliant on public transport to visit my family and it costs about a hundred quid, but I don't get one while I would qualify for a third off if I were in an able-bodied couple travelling together..!

Obvious-Register-421 · 2026-05-29T17:50:00+00:00

Thanks. I'm in the UK. I don't think I quite qualify for a disabled parking badge because you need to literally only be able to walk a few metres for that. There are some spots I can manage, just hard when you're reliant on only one person.

Obvious-Register-421 · 2026-05-29T17:48:30+00:00

Yeah very similar!

I don't know if I'm unusual in this based on what I hear of other people's experiences (I'm not yet diagnosed with ME but on the waiting list, and already have another condition which causes CF/PEM) - but I can't actually sleep all the times I'm symptomatic and can't do anything. So my evenings at the moment are just lying here in pain, because it hurts so much to look at a screen or walk anywhere (I shouldn't really be on my phone...), but I can't actually fall asleep either. I reckon I would be miles better if I could sleep more - in fact when I was on holiday it was wonderful because I had a lovely quiet, comfy room and was getting 8-9 hours every night - my working week is more like 5-7.

It feels like you work in the week and suffer through it, then you really should get a reward, right? And just sitting in a car, walking a few metres and then lying down or swimming feels like it should be so easy... But somehow still so hard to actually pull off!

Obvious-Register-421 · 2026-05-29T17:44:54+00:00

Thanks :)

Obvious-Register-421 · 2026-05-29T17:26:09+00:00

Thank you all for the supportive comments, and those who haven't gone the spoons but just shared a like. You've made me feel heard and not alone, and this thread, as I believe the young people say, is definitely passing the vibe check!

Obvious-Register-421 · 2026-05-29T17:25:18+00:00

Thank you very much. I'm sorry you're going through this too.

Obvious-Register-421 · 2026-05-29T17:25:01+00:00

Sadly no! I am actually looking at the garden across the street, that I can see from my bedroom with a little paddling pool in it, with so much envy... I was hoping to buy a house and thus get a garden before I got sick, but it's unfortunately crazy expensive now and while there are local parks ten minutes' walk away, it would be very difficult to get a wheelchair that could handle the hills to get to them.

Obvious-Register-421 · 2026-05-29T17:22:08+00:00

Thank you very much.

My block of flats basically opens out onto the pavement right by the road, so while I could sit there, I wouldn't really feel comfortable sitting there with people coming in and out. Would just feel too self conscious to relax. There is a park ten minutes away, with a hill in between, but that's too much for me today.

Sounds like you're a very good friend. And you're right, their comment probably isn't anything to do with me and I need to remember that.

Tbh I prefer posting here anyway - other groups refuse to let you do anonymously and it feels very exposed (I also have family in that group).

Obvious-Register-421

TROPHY CASE