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What are you up to today if you have chronic illness?

980 replies

MewithME · 10/05/2025 14:02

I do like the What are you doing today thread. But as someone with an energy limiting illness, I find myself marvelling at the level of activity that is beyond me.

Sometimes I feel sad about it even after accepting my illness for a few years now.

My week at work has been brutal and I'm feeling very weak and worn down. I am trying to find some inner peace.

This morning I managed a bath and ds helped when shopping arrived. I sat in the garden for a little while but newish neighbours were playing loud music which I found a bit stressful.

I've managed to put a wash on and made some lunch for us. I'm now in bed listening to some music festival in town floating on the breeze. There's sirens going off, so hope nothing bad has happened to anyone.

I'm going to lie down for a couple of hours. Hoping to watch a film with DS later. Pizza for dinner.

I found a nice new podcast called Shedunnit with lots of Agatha Christie in it which is up my street.

I may just lay here and listen to that for a while.

So if you have ME or LC or fibro or anything else that is a flipping funsucker of a thing to deal with, do share your little things. Our world is smaller but we are here.

I will add I know there are those worse off than I am, but not matter what we deal with, chronic illness is hard and it's hard to feel part of the world.

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TheproblemitsME · 06/09/2025 15:36

I have ME. I’m on day 2 of being bedbound and zero energy. This is the first time in 48 hours I’ve been able to hold my phone it felt too heavy before. It’s my own fault as I did school pick up on the first day back as wanted to see the dc new classrooms etc and I’m really paying for it now. It was only 10 mins each way I haven’t been able to move , talk , wash etc because of it and I’m so cross with myself I just wanted some normality

ruethewhirl · 06/09/2025 15:42

TheproblemitsME · 06/09/2025 15:36

I have ME. I’m on day 2 of being bedbound and zero energy. This is the first time in 48 hours I’ve been able to hold my phone it felt too heavy before. It’s my own fault as I did school pick up on the first day back as wanted to see the dc new classrooms etc and I’m really paying for it now. It was only 10 mins each way I haven’t been able to move , talk , wash etc because of it and I’m so cross with myself I just wanted some normality

That sounds dreadful, I'm sorry you're having such a rough time.

MewithME · 06/09/2025 16:07

MewithME · 06/09/2025 15:32

Flipping heck @Tiredandwired2 you're flipping awesome managing all that! Hope your day settles in and you and your daughter get to grips with GCSE curriculum ok. My ds has just started his GCSE curriculum too. He seems happy so far. 🤞🏻

He calmed down and then wanted to go out after all so we've had a nice lunch together. Actually mine wasn't that nice but I enjoyed being with him and out in the world for an hour.

Although people run my town down a bit, it's so handy for everything. I always say if I was going to get ME anywhere, this is the best place. I've got pubs, shops, doctors, dentist, school...all 5-10 mins drive away... Plus some nice countryside places. I pick the walls with benches now and luckily I have a few choices.

Sorry for typos 🙈

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Hotbeverageplease · 06/09/2025 16:07

@TheproblemitsME Im so sorry you’re suffering so much for trying to do something that the rest of the world takes for granted. I was a similar level of ME when my now teen daughter started infant school and I remember the feelings/ emotions very well of being so unwell after occasionally attempting to attend any school related things. It just felt so very unfair.
Please don’t blame yourself or be cross with yourself though because it’s absolutely not your fault, it’s the illness! I find there’s sometimes no rhyme or reason to why sometimes PEM is worse than others so be kind to yourself and rest, rest, rest.

A total rest day here for me, went out for lunch for my mums birthday yesterday which I’m thrilled I was able to do as last year I couldn’t but boy do I feel truly dreadful today. Stayed in bed all morning, got up for some food and needed to lie down again shortly after so back to rest in bed it is. So sending empathy to all those feeling dreadful today. I can feel the sun and the breeze through my bedroom window so that’s one little positive.

MewithME · 06/09/2025 16:09

@TheproblemitsME I'm so sorry. It's a wicked illness. Of course you wanted to do that. It's just cruel that you've paid for it so badly. Rest and rest and rest and I hope you'll get back to a better baseline. Sending all best wishes to you.

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Stressybetty · 06/09/2025 18:54

Sending best wishes to everyone. Another difficult day. MIL decided to strip off during the night including her pull up nappy and put half her clothes in her used commode then go back to sleep effectively wetting the bed, floor and herself. So more work for me. DH also in a mood of disagreeing with everything I say today. Place is a tip, DH has been treating the ground floor like a potting shed for weeks and promising to sort it. Just all bugging me. Wanted to book a tip run tomorrow to get rid of some rubbish which is also wrong apparently. Fed up

MewithME · 06/09/2025 21:28

Oh man... @Stressybetty ... Not surprised you're 'stressy'.

I will start a new thread when this one is full. I've never had one full up before. And I've been here 15 years 😁

Nn everyone. Hope you all get some much needed rest.

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Stressybetty · 07/09/2025 12:23

Happy Sunday everyone, hope everyone's ok. @MewithME yes please to continuing to a new thread!
Am calmer today, period hormones easing off. MIL woke up early, changed, toilet, watered and settled off back to sleep. Dogs fed, pups checked, washing on, washing up done. Got great north run on as a colleague is running but very unlikely I'll spot them.
Gearing up to depoop garden and load car for tip run later. Agreed to take excess recycling and a few other bits. DH will be asleep till lunchtime, is practically nocturnal these days by choice and it kind of works well with his mum and the dogs. It feels like we're just getting through this time with his mum and one day we'll restart our lives properly.

Orangesandlemons77 · 07/09/2025 14:13

I would like another thread too please.

Woke up about 11am to a big thunderstorm which was quite dramatic. Am not very slowly trying to cook a veggie curry with butternut squash. I haven't tried cooking in ages so will see how it goes. Got one of those spice packs to add to it so pretty easy.

Greenvases · 07/09/2025 14:21

Me too. Nice to have a moaning spot😁. Thank you.

ruethewhirl · 07/09/2025 14:35

Yes please from me too 🙂Good to have a space where we can tell it like it is!

Orangesandlemons77 · 07/09/2025 14:47

ruethewhirl · 07/09/2025 14:35

Yes please from me too 🙂Good to have a space where we can tell it like it is!

Definitely!

BerfyTigot · 07/09/2025 16:14

Agree! I like hearing about what everyone is doing. And knowing that you all understand when I feel frustrated by not being able to do as much as i want to.

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Whatarethese1 · 10/09/2025 12:40

Hardly slept last night. Crashingly depressed. Eyes hurt. Please share your top tips for getting going without sinking further. Before all this a good run would be my go to. Ugh.

MewithME · 10/09/2025 13:15

Whatarethese1 · 10/09/2025 12:40

Hardly slept last night. Crashingly depressed. Eyes hurt. Please share your top tips for getting going without sinking further. Before all this a good run would be my go to. Ugh.

Honestly. Rest. That's all I got. Everything feels worse with poor sleep. Bed. Curtains closed. Eye mask. Podcast of you don't want to sleep. That's my go to.

We have a new thread going too. Come join for a moan and friends ear there when you are up to it.

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Whatarethese1 · 10/09/2025 13:17

Orangesandlemons77 · 07/09/2025 14:13

I would like another thread too please.

Woke up about 11am to a big thunderstorm which was quite dramatic. Am not very slowly trying to cook a veggie curry with butternut squash. I haven't tried cooking in ages so will see how it goes. Got one of those spice packs to add to it so pretty easy.

The Spice Tailor and similar kits are so good. Was wiped out yesterday and tipped one into a pan with a can of chickpeas and some veg from the freezer. Nowhere near as good as a fresh butternut squash curry, but fine and minimal effort. DC ate it and had seconds.

Whatarethese1 · 10/09/2025 13:48

Thank you @MewithME Means a lot to have a group of people who understand.

DH clapped in my face and told me to ‚get going‘. Cannot imagine going back to living alone though when being so floored. Just cannot manage day to day.

Tryonemoretime · 10/09/2025 16:04

Thankfully, my Long Covid crash only lasted a week and now I'm back to my new normal ie I have to pace very carefully now. I'm so sorry for all of you who have such a rotten time of it whilst managing a family etc. Must be grim!

Orangesandlemons77 · 10/09/2025 19:28

Whatarethese1 · 10/09/2025 13:17

The Spice Tailor and similar kits are so good. Was wiped out yesterday and tipped one into a pan with a can of chickpeas and some veg from the freezer. Nowhere near as good as a fresh butternut squash curry, but fine and minimal effort. DC ate it and had seconds.

It was one of those I had! Yes, it was nice.

Orangesandlemons77 · 10/09/2025 19:29

Whatarethese1 · 10/09/2025 13:48

Thank you @MewithME Means a lot to have a group of people who understand.

DH clapped in my face and told me to ‚get going‘. Cannot imagine going back to living alone though when being so floored. Just cannot manage day to day.

Sounds very annoying. Sometimes they don't get it, do they.

MewithME · 16/09/2025 20:05

@Whatarethese1 glad you have joined us. Sorry husband is being so callous. I'm alone with my son but think it's for the best. I can't imagine trying to cope with a man and his wants and needs though I did pick an awful one when I got married. Must be amazing if you have someone who said actually a good person and supports you and does their share and stuff.

I mean , being a lone parent is flipping hard and scary with MEcfs but I am so desperately glad I am not with exh anymore (though I'm sure what he put me through made a contribution to my chronic illness).

Today has been mad busy but at home at least.

So glad I didn't do the ECG. I'm really running on empty. I hope they got my message or text...zero acknowledgement of rearranging despite me following what they asked for!

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MewithME · 16/09/2025 22:14

@Whatarethese1 we have a new thread btw. I think I did it too early! I've never had a thread fill up before!

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Realisation14 · 17/09/2025 07:36

MewithME · 16/09/2025 22:14

@Whatarethese1 we have a new thread btw. I think I did it too early! I've never had a thread fill up before!

Is there a link to it please?

Whatarethese1 · 17/09/2025 08:35

Thanks for the message @MewithME

I agree and think major stress is a big contributor.

Sorry about the ECG not working out. I was unofficially diagnosed with MCAS alongside the other issues. Was suddenly reacting to everything, including the tape in hospital. Never got a full diagnosis as it was the Covid era but did have it in a treatment plan with a low histamine diet and long term antihistamines. Found a working spot with half a tablet a day. Didn’t really feel the side effects and symptoms reduced.

Will head over to the new thread. All the best for getting through the week.