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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.

OP posts:
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Ohmygodthepain · 01/06/2025 15:40

I've got crippling sciatica pain. So far I've got up and made my way downstairs for brunch that DD made. Then back to the sofa, and back upstairs for a wee. Can't face the stairs again so I've come back to bed. Feeling really sorry for myself.

ChampagneRose · 01/06/2025 17:28

Hello all! I also have ME. Had it very mildly till I got Covid and then Covid knocked me for 6 and I’ve never recovered my baseline. I was severe for a while but am back to moderate and sometimes the mild end of it.

I still have to work (mainly from home but sometimes I have to go to the office) as I’m the breadwinner but to work, I can do absolutely nothing else other but rest. I’m seriously pissed off today as I’m really tired and Dp ‘forgot’ to mention people were coming round for dinner. This isn’t the first time he’s forgotten and I think he does it deliberately as he knows I don’t want visitors (it’s my house and he lives here with me). I find social interaction exhausting and I barely get out of bed on the weekends normally.

I just find unless you have this horrible disease, you can’t understand it. It’s always worse in nice weather too as everyone is out and about and I know I can’t be!

MewithME · 01/06/2025 18:57

That sounds really difficult @ChampagneRose. I think we have to be almost rude to look after ourselves. It is incredibly hard to stand up for ourselves.

@Ohmygodthepain that sounds awful. I don't know what you can do for sciatica. Can a tens machine help?

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ruethewhirl · 01/06/2025 20:13

Ohmygodthepain · 01/06/2025 15:40

I've got crippling sciatica pain. So far I've got up and made my way downstairs for brunch that DD made. Then back to the sofa, and back upstairs for a wee. Can't face the stairs again so I've come back to bed. Feeling really sorry for myself.

Feeling your pain, literally! Sciatica's terrible and mine is raging right now, I'm resting up after doing too much housework over the weekend (it was a case of needs must, unfortunately!). Hopefully getting a cleaner in soon.

Hope the pain eases soon. Do you find any particular painkillers help?

BerfyTigot · 01/06/2025 20:44

I managed a short, slow walk today. 5 mins to a bench, 20 min rest then 5 mins back to car. I was intending to go to a slightly further bench but listened to my body.

This represents a huge achievement for me. Need to get a pedometer to see how many steps I managed.

Had an hour's nap afterwards 😆

Realisation14 · 01/06/2025 21:26

Why is every day such a struggle to maintain some semblance of normal life? 😔

TheodoraCrumpet · 01/06/2025 21:47

Wildly overdid things yesterday for DH's thing. Can not sit, stand or lie down without pain. I'm afraid I am not enduring this cheerfully, and my tolerance levels for family stuff are low. I'm trying to inject some humour but suspect it's not that successful. I feel horrible about it, because everyone has their own shit to deal with. They don't need my poorly concealed narkiness.

Sayithowiseeit · 01/06/2025 21:55

I've managed to tidy up downstairs, doing it in little baby steps bit by bit. Feeling like a good mum today.

wavingfuriously · 02/06/2025 00:10

Ohmygodthepain · 01/06/2025 15:40

I've got crippling sciatica pain. So far I've got up and made my way downstairs for brunch that DD made. Then back to the sofa, and back upstairs for a wee. Can't face the stairs again so I've come back to bed. Feeling really sorry for myself.

That's awful, been there done that, sympathy for you🌹

Ohmygodthepain · 02/06/2025 13:06

@ruethewhirl thanks. I upgraded pain relief on Friday to tramadol (was on codeine before) plus naproxen and amitriptyline at bedtime but it's still agonizing. GP sent me for an X-ray on Friday which was excruciating - 2 weeks for the results! I've made it to my desk this morning as I WFH but foggy-brained a bit. DD is home and feeding me/bringing drinks etc but the house is falling apart! So so frustrated.

Orangesandlemons77 · 02/06/2025 13:28

I'm still in bed. Need to try and get up soon and do some washing etc.

ruethewhirl · 02/06/2025 13:47

Realisation14 · 01/06/2025 21:26

Why is every day such a struggle to maintain some semblance of normal life? 😔

I've been wondering the same thing today. Only a few hours' kip as my sleep disorder decided to kick in, and the back pain didn't help. Thankfully I wfh, but it's feeling like a struggle today. Hope your day gets easier.

ruethewhirl · 02/06/2025 13:52

Ohmygodthepain · 02/06/2025 13:06

@ruethewhirl thanks. I upgraded pain relief on Friday to tramadol (was on codeine before) plus naproxen and amitriptyline at bedtime but it's still agonizing. GP sent me for an X-ray on Friday which was excruciating - 2 weeks for the results! I've made it to my desk this morning as I WFH but foggy-brained a bit. DD is home and feeding me/bringing drinks etc but the house is falling apart! So so frustrated.

Oof, the pain does sound bad. Thankfully mine normally isn't as bad and I can more or less keep on top of it with Nuromol and the occasional low dose of codeine, though it did flare badly over the weekend. Hope it starts to improve soon. I'm the same today, wfh and dragging myself through the day as best I can but at least the sciatica's abating. Our house is a shambles too atm and doing my head in! Pain management must come first, though.

Tryonemoretime · 02/06/2025 18:59

A very elderly friend is ill and waiting to go for hospital tests. I've been meeting up with her for coffee every month, but haven't been inside her house for a very long time. Short version.....she's now ill and needed some shopping, so I went around to get her shopping list this morning and saw her kitchen. She's obviously been totally unable to clean it for a long time. It was like something from a horror movie. Grease all over the tiles and cupboard doors and cooker. Unwashed dishes and pans piled high. Not a spare clear inch of worktop. Tins of very old cakes and biscuits.... some actually crumbling away. A yule log with a slice off the end. A chunk of Oasis flower arranging stuff stuck in a bowl of congealed fat. Had anyone at our church known she was struggling (she used to come years ago), they'd have helped, but she wouldn't even let me in until today. I arrived at 11 and got home just before 3 and only managed to deal with the hob and work surfaces. I'm totally exhausted and have just been sitting. What family she has live hundreds of miles away. I have no contact details and she wouldn't give them to me anyway. I'll contact Age Concern tomorrow and see what can be done for her, but I'm sure no cleaner would want to clean out her cupboards. Any advice anyone?

Tryonemoretime · 02/06/2025 19:03

I know I can't go around again for a while as I'll go into a Long Covid crash (think I'm starting one now as am so utterly exhausted) but ama feeling a bit tearful as I'm very fond of her.

MumChp · 03/06/2025 13:20

I have had a day off from work. I substitute as a nurse as I can't work a full time job and didn't get a shift yesterday. I have a night shift tonight.
So today grocery shopping, doing floors and laundry. Not a lot but really too much for me. Packed lunches for tomorrow done.
Only the drier left. And tea. It never stops.

Orangesandlemons77 · 03/06/2025 16:28

Would the elderly lady consider getting a cleaner? Maybe she could claim attendance allowance if she is struggling, it is much easier to claim than PIP.
In some places a welfare person can come and do the forms with them.

Orangesandlemons77 · 03/06/2025 16:29

Have not had a good day with fatigue and anxiety, made it out to the pharmacy to collect my prescription and there was a poor soul in there waiting for methadone.

Son in middle of GCSEs, he has been in for some study sessions today. It's a lovely day out, sunny but fresh and windy after the rain this morning.

Idontknowhatnametochoose · 03/06/2025 16:41

Crying. Again. My depression is really bad.

Orangesandlemons77 · 03/06/2025 16:43

Idontknowhatnametochoose · 03/06/2025 16:41

Crying. Again. My depression is really bad.

Sorry to hear that, I have been tearful today as well. My hormones make it worse I think. Has anything made yours worse today do you think?

MewithME · 03/06/2025 18:20

Orangesandlemons77 · 03/06/2025 16:43

Sorry to hear that, I have been tearful today as well. My hormones make it worse I think. Has anything made yours worse today do you think?

I was inconsolable on Saturday. Definitely think it's peri for me influencing it. Everyone was kind on here which helped.

I'm still fed up but it's not as bad as it was.

This too shall pass.

OP posts:
Idontknowhatnametochoose · 03/06/2025 18:55

Orangesandlemons77 · 03/06/2025 16:43

Sorry to hear that, I have been tearful today as well. My hormones make it worse I think. Has anything made yours worse today do you think?

A lot of mine seems related to chronic inflammation and gut health. I've had constant abdominal pain all day too. I had some wheat biscuits earlier which I can't tolerate well. I think my physical body is just basically f'd and it is affecting me mentally. I'd have to go right back to square one with my diet and I honestly can't be bothered anymore as I've tried so hard over the years.

Tryonemoretime · 03/06/2025 19:00

Orangesandlemons77 · 03/06/2025 16:28

Would the elderly lady consider getting a cleaner? Maybe she could claim attendance allowance if she is struggling, it is much easier to claim than PIP.
In some places a welfare person can come and do the forms with them.

Thank you but she says the last cleaner was hopeless and can't face getting another one. I told her that I'd ask Age Concern but she doesn't want me to do that. I had a very quiet morning and literally popped in for 10 minutes this afternoon. She's looking a bit better today. She doesn't know I've already spoken to Age Concern....

Tryonemoretime · 03/06/2025 19:01

Idontknowhatnametochoose · 03/06/2025 18:55

A lot of mine seems related to chronic inflammation and gut health. I've had constant abdominal pain all day too. I had some wheat biscuits earlier which I can't tolerate well. I think my physical body is just basically f'd and it is affecting me mentally. I'd have to go right back to square one with my diet and I honestly can't be bothered anymore as I've tried so hard over the years.

Have you been tested for coeliac disease? It's a simple blood test now.

Idontknowhatnametochoose · 03/06/2025 19:03

Tryonemoretime · 03/06/2025 19:01

Have you been tested for coeliac disease? It's a simple blood test now.

Yes, negative. Although I think I have non coeliac gluten intolerance