What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

If we did though, reckon mechanic would take one look at us, suck air in over teeth and say "it's gonna costya" with a good cockney accent 👍🏻😉

I am at the Drs waiting for my audiology appointment. It's not til 4.30 but I was determined not to miss this one 😆

Is that an EV? We were looking at those for me when we needed debated a second car (we both WFH). However that won't happen now.

Ooh lovely! Many years ago we had an original Renault 4 which was so handy. Not yellow but cream and rust 😀 We then moved on to 2Cvs which are lovely and comfy but death traps at speed. I got a bad neck from the funny gear stick so DH drove it while I had his business automatic. French cars have lovely suspension.

Oh I think I'd be written off.

Exciting news @FurForksSake

Welcome @Torchout

Hello @Torchout, welcome!

Happy new car @FurForksSake

I am done with work now until Wednesday. It's been an interesting day, not much actual work but lots of chats with people which have been energising and exhausting at the same time.

Went on the NHS app to check something earlier and saw my long COVID clinic referral form - obviously I know how I feel but it was weird to see all my symptoms written down (ticked everything on the list apart from speech/ language problems).

Just been chatting to my nextdoor neighbour's gardener who also runs sound baths - she's had quite a few people with LC come along, with varying but generally positive results. It feels like it might be a bit much at the moment but got her details to maybe give it a go in a couple of months time.

@martha79 it's good to have these things on file...you never know.

I had to sign a form for the consultant and it said my actual age, not DOB so I thought, really?? I forget.

I have had a lovely day at home in my nightie, it has been quite relaxing. Out in the morning but I suppose I'd better get dressed for that.

@FurForksSake Bright yellow - you'll never lose it in a car park!

Well I am fully hoovered but to be honest, can't tell much difference 😕

I'm going to wait til tomorrow morning for it to settle but both ears still feel blocked on the inside 🤷🏼‍♀️

More positively, these were waiting for me at pottery, fresh out of the kiln (not the candle). I'm quite pleased with them ☺️

Have a (still) quiet evening all 💕

Maybe it's eustachian issues too. How frustrating. At least someone can see more of your eardrum now to diagnose. Could be some fluid?

I love your pottery, beautiful organic shapes.

@Swanhilde they are very pretty 🙂

@Swanhilde I love your pottery!

The candle holder is lovely.

Well lovelies it’s been a long week so glad it Friday tomorrow !
looking forward to finally having my hair cut and coloured tomorrow.
Had a very educational call yesterday with somebody from the ME clinic. We had a long chat and some things are being put into place to help me at home like 2nd handrails on the stairs and advised to use a shower seat so just bought a nice one from Amazon. Apparently all the “good” stuff I think have been doing recently with resting etc is mostly me being in boom and bust mode. She’s sent me over an activity diary to help me with my pacing and advised me to aim lower a slower ! I am speaking with HR tomorrow to see if I can wfh an extra day and do my office days on Monday and Friday so I am spacing them out etc. If anyone has any advice on pacing in work I would grateful for some, for info I work in a admin roll so 9-5 quite fast paced as it’s finance but I am murder for just going straight through sat at my desk eating dinner there etc and I know that’s not good.

@Dozymoo42 I haven't quite done this but have seen advice to mark in your calendar and set an alarm for regular rests, e.g. ten minutes every hour, whether you feel like you need it or not. Get away from the screen and sit/ lie and do nothing. Probably easier to do at home.

Love the pottery @Swanhilde

I've got such a headache this evening and feel like all my muscles are really tight. Not unexpected after being so busy though.

thank s@martha79 I hope you’re not in pain for too long! My hands are quite sore at the mint just off for a early night

Just catching up, sitting with a hot water bottle on my back and on the sofa

I found this site Readly the other day, it has lots of magazines and newspapers on there, not quite a nice as reading a real copy though, but something I wondered if others here might like?

It has a free first month thing I am doing. I think if anyone else wants to do that I get another month free, I will add a link (I intend to probably cancel it after that as it is £12.99 a month.

https://gb.readly.com/accounts/refer_friend

Hello all. It has probably been mentioned but I find the app 'Borrowbox' so useful, it is free from your local library service and has thousands of e books and audio books on it to download. I find it great for the audio books when I am too tired to read, need to lie down but not wanting to sleep necessarily.

Thanks I have made a note! I forgot the name of the service so that sounds great. I don't have a library card at the moment so that's an extra incentive to sign up.

@Orangesandlemons77 that is useful about the magazines thank you.

I have had such a busy week my guts are in turmoil and I went to bed with a hot water bottle to ease the pain. A bit better this morning, I have an appointment at 10.00 then back home to rest!

MEcfs/PEM plus IBS, what a great combination!

Thanks @Orangesandlemons77, I'll have a look. I read magazines online through my library (they use the Libby app) but would be good to have an occasional newspaper.

Visible has given me a score of 1 this morning for the first time, not that I'm really surprised after this week. Meeting a friend for a cuppa later so I'm doing as little as possible around that.

Payday today and I'm debating whether to go for the actual Visible band.

Morning all, still shattered here from a ‘busy’ week even though it would be classed as a very quiet week by most people but you know what I mean!
Used our oven last night now its finally reconnected and realised after waiting an age that it wasn’t heating up properly! Vaguely remember thinking it wasn’t working as well as it should before we needed it disconnected because of the flood water. Did some calculations and realised it’s 20 years old! DH still thinks we should try a repair first though I’m thinking at that age it’s probably not worth it. So back to air frying the pizza 😂 I have to laugh as I havent the energy to cry!

Love your pottery pieces @Swanhilde especially like the coasters and candle holder is pretty. I did pottery classes years ago and didn’t progress much beyond thumb pots/ coil pots but found it so relaxing. Though I did make a little teddy bear that I then taught my class of 6/7 year olds to make as we were lucky enough to have a kiln in my school back then. They probably did a better job than me tbf 😊

Morning everyone!
Im loving your pottery @Swanhilde , I used to go to a class but haven't been for ages due to my recent relapse. I'm not very good at it but it's very satisfying knowing I've made something.
I had a load of blood tests done lately for my relapse (ME) and now they've told me I have high cholesterol - my bmi is 18, I'm vegetarian, and don't smoke or drink! So my gp wrote to me telling me to lose weight and stop smoking/drinking. So now I have to make another appointment with them to explain it must be genetic, so I dont know what will happen about that.
Does anyone else wish they'd find something that they can actually treat that would fix the fatigue and ME symptoms?? All i seem to do is burn myself out working and need long periods of leave to recover. It doesn't feel sustainable.