Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Having a brief lunchtime sit in bed. Big meeting shortly then parents evening. Feeling buzzy and shakey so not sure how I'll manage. I'm feeling sort of zen like. I notice I get this way at times. It's a cross between numbness and deep acceptance. Weirdly positive and negative. Coping mechanism I suppose.

Anyway, I just read this article. Thought it was really good so thought I'd share.

https://www.theguardian.com/society/2026/feb/24/my-maddening-battle-with-chronic-fatigue-syndrome-on-my-worst-days-it-feels-almost-demonic

Pester you later my lovely poorly friends x

I am marooned on the sofa airing my poor feet. I 've been wearing shoes over my dressings and it has been too much friction. It really does improve the area to get the air to it, so I'll just do my best. I've got some of those terry towel hotel slippers which are OK if it's not raining!

A bit of a bad day for me today 😢 Am stuck in bed but trying to keep positive as it is definitely the right place for me to be!

overdone the last couple of days had an exam yesterday so did not sleep a wink the night before and then failed the exam so had a bit of an emotional day yesterday.

Reading back through the thread I can see a lot of you guys struggle with abnormally heavy painful periods. I did too, so much so that I had a hysterectomy at 29 when all over treatments failed. Makes me wonder if things are linked even all the way back then.

@MewithME thanks for the article, very interesting.

Sorry about your exam, hope you can re sit.

I sometimes wonder what more holistic diagnoses would reveal. The BBC article upthread said how many more females get ME, so obviously being female is a huge risk factor in general. Lots of subtle things that can malfunction.

Edit to add, hope you feel better soon!

Not having a good day here maybe I did too much yesterday. Oh well. The visible app says heart rate is up and to have a quiet day so I'm resting peacefully on the sofa.

Hope we all feel a bit better soon 🙏

Hope those having crappy days can rest and feel a bit brighter soon.
After a lot of moaning and a long run of crappy days lately I can finally say I’m having a better day! Mostly because I actually slept all night which rarely happens.
Finally got the promised sunshine so been pottering around the garden wirh the dog. DH is still digging up brambles and our little dog joins in digging and then tries to yank the roots wirh her teeth 😂 Hilarious and quite helpful actually as long as she doesn’t decide to do it to the new shrubs he’s planting in the cleared bits!
Mostly sitting watching as trying my absolute best not to overdo it like I usually do in true boom and bust style so having a rest in bed this afternoon as hospital appointment on Friday for follow up cardiology tests so I know that will be exhausting.

Massive meeting ✅

Next .. parent's evening 😖😭

Having a few mins lull now before the inevitable overdoing it.

@Orangesandlemons77 @TodayIsatrickyone

Well done both for being very very good!

Hope you have a good parents' evening!

But remember @MewithME it's time for the WEDNESDAY KLAXON 📯

I am home and done and drinking a cuppa in bed ☕

Legs feel much better today after some heat on my lower back last night. Must remember this before resorting to painkillers that don't work 💊

Nothing to do but my Ceramics class tomorrow afternoon so I'm looking forward to a lie in in the morning. DH is cooking tea and then I'll have a lazy evening 🥱

('Accidentally' ate a moam chew at work. It was delicious but I really hope I haven't screwed up my good sleep for a moment of sweet pleasure 🤞)

Have a restful evening all 💕

Hugs to those of you having difficult days.

Hope your feet are doing OK @TeaAndStrumpets

Thanks for the article @MewithME - it also popped up on Facebook for me and I had to laugh at one of the comments that said "nobody with chronic fatigue is managing to read something that long"!

It's been a tricky day at work here, for long and boring reasons, but I really don't need the extra stress. I've just written my GP a small essay on the website contact thing about how I feel recovery has stalled, is there anything else I can be doing, and can I have another fit note to back me up at work because I need to be sensible and not do the potential work travel I have coming up next month.

Day off tomorrow and doing some nice craft stuff with a friend, really hoping for a good day energy-wise although she's been pre-warned I might need to just stop and nap.

Evening all.
Had to take it easy today. Overdid it yesterday. Felt good so decluttered & cleaned the kitchen worktops. Managed to put away all the stuff DH keeps leaving out as it annoys me.
Early night again I think 😊

@MewithME good luck with the dreaded parents evening. It's bliss when they finally leave school!

Sorry for all the crappy days.

I went into work today, we’ve had a shift around and so my desk has been nicked and then changed. So how I had everything set up wasn’t a thing. I’m going to have to sort it out when I’m next in in ten days as I’ve ended up in absolute agony and can barely move around the house with my back. Hydro tomorrow and I’ll get out somewhere in the morning to try and keep moving

Ive got my first online therapy session at 8.30. Im in no mood for it as im in pain. But the therapist is a cbt therapist with a specialism in long term conditions and chronic pain so i hope it will help.

https://www.paintrainer.org/login-to-paintrainer/ has anyone used this? The lovely therapist suggested it for chronic pain and I’m going to give it a go. Apparently it’s an eight session course about learning to manage pain and pacing in chronic pain. I didn’t even know pacing was a thing in chronic pain. I just keep doing things until I’m broken 🤣

Thanks for asking @martha79 healing I think but insanely itchy which is why I'm awake at 1 a.m!

@MewithME how did parents evening go?

I'm having a really rough time at the minute with stress. My gastro doctor also changed my IBS medication so I'm having a hard time with that (side effects and managing it). Sleep may as well be a magical fairy tale as far as I'm concerned at the moment. Pain has been unreal, I feel like I should be 87 not 37.

@Realisation14 everything feels worse at night when you're desperately tired, doesn't it. I've had IBS for years and it is like a barometer for stress.

Hope you're feeling a bit better today x

@TeaAndStrumpets itching is a good sign but so annoying!

Hope you're doing better today @Realisation14

GP surgery have texted me with a phone appointment a week on Monday, which is fine - it's not urgent. Although I sometimes get that then messages from GP in the meantime, so will see what happens.

Friend visiting today and I'm battling the "what if I feel ill while she's here" thoughts, which in itself is making me feel worse. But I've got a couple of hours to rest a bit more and settle down first.

I've just put an econsult to my Drs because I still can't hear out of my right ear and it's been five weeks now! 😔

I know they'll probably say 'just wait' but it's incredibly frustrating ...

Staying in bed this morning with tea. Sleep was okay again, but I'll be resisting the sugar today 🍬🍬🍬

@Swanhilde has anyone actually looked in your ear?

🤣🤣🤣 Um no ....

That's a really good idea @TeaAndStrumpets I'll get DH to have a look.

Thank you 💕

That's true love! I went to see a nice ear lady to have her check for wax the other year and she was able to show me in glorious technicolour on her screen! Totally bunged up. I only went because my sister has terrible ear wax problems caused by tiny ear canals, and has it removed twice a year.

Morning!

I got a call this morning for a last minute rheumatologist appointment. I am bricking it! It’s at 13.30. I was referred by a physio primarily for potential inflammatory back pain but I’m hoping he wrote all of my issues down and they’ll listen to all my woes. I’d really like a name for all my issues and a referral to pain clinic and support for the fatigue and day to day crap.

I am so nervous that they’ll just dismiss me.