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....

Yes I'm saving it! Have you watched Mademoiselle Holmes? That is very entertaining. Lola Dewaere is a natural at comedy. Apparently it has been a great success in France so they're making more seasons. I hope Lola is still free for being in Astrid!

No I haven’t but I must and I’m sure she’ll be available still for Astrid. Have you seen Panda? I thought that was very funny too, it was broadcast on More4 sometime last year I think so should still be on the C4 app

And sorry I wasn’t that talkative yesterday, fatigue was really kicking me and I couldn’t concentrate on much

Hope today is easier @JewelleryCat

@TeaAndStrumpets I must add mademoiselle Holmes to my watch list! Is that C4 too?

Yes I think so!

Thanks will look! Keep meaning to get a larger TV for all the subtitles....only have a 32" at the moment!

I think that’s my tv size as well lol. Sometimes I do like the sound of a bigger tv though but it’s what fits into the space

@TodayIsatrickyone yes I’ve seen it on the C4 app and thank you for saying hoping today will be easier. Fingers crossed it is

Ha the huge ones are a bit much but maybe I'll find a happy medium. I've been waiting for this one to die but it's 11 years old and perfectly fine!

This might just be me but does anyone else find that when they’re in a stressful situation, their fatigue is still there but more in the background and when the situation has gone and it’s not stressful anymore, their fatigue fatigue is back with a vengeance?

Oh my goodness @JewelleryCat yes very much so! Im in a similar boat lately.
find stress is as big a factor in PEM as physically overdoing it but sometimes stressful situations can’t be avoided. Treat it just as you would if you’d overdone things a bit, lots of rest and TLC til youre back to baseline.

Absolutely. When I'm pushing through I get a surge of adrenaline like in an emergency situation, then when I should really stop I carry on because I feel good! The next day or so I will crash horribly. The trouble is sometimes I feel reasonable on day 2 and then it smacks me on day 3!

@JewelleryCat yes absolutely! When my mum died I had a sudden spurt of energy (despite not sleeping) and was suddenly able to drive 400 miles and organise funeral, ring relatives etc. Was bizarre. Back to frequent fatigue now, but nowhere near as bad (previously in bed, unable to watch tv).

Thank you all for making me feel like it isn’t just me and sorry about my typo, I didn’t mean to put fatigue twice. Yes, my fatigue has been very bad the past few days and I’m trying to have lots of rest but then that means my joints are more stiff and it’s a catch 22 because I’m having problems there too

@BerfyTigot I’m very sorry to hear about the loss of your mum 💐

@TeaAndStrumpets how are your feet now?

Yes I get the breaks in fatigue with stress too. Like today, I have been at the hospital for an appt and have to go for a CT scan and follow up for this mouth thing. I should be worried but I am strangely hyper and buzzy. Bit odd.

It will probably kick in tomorrow. Annoyingly, I have this scan early next month but won't get the results until 2 months after. That's a long time.

Gosh that’s a long wait for results @Orangesandlemons77 Sounds like maybe an adrenaline surge got you through but just hasnt worn off yet perhaps.

Hospital here too today for my heart scan and a 6 week wait now to see the consultant to discuss results. The radiographer did chat through results a little though so some worsening of measurements from 2 years ago but probably not severe enough to cause the faint in her opinion. So hoping I might get a reprieve with driving when I see the cardiologist if he agrees 🤞
I’m trying to rest but just can’t switch off as brain feels wired so expect fatigue will kick in tomorrow too. I find this often happens when I’ve been out anywhere. It’s like I get overstimulated or something. So audio book and dog cuddles again it is!

I finally got a stable score today on Visible for the first time in about a month so that was rather good timing at least! Expect it to dip again tomorrow though!

@JewelleryCat thanks for asking. They are quite unsightly but not itching any more thank goodness. They look to be healing OK so I am giving them air most of the day.

@oranges so sorry everything is taking so long. It's horrible when things are hanging over you. Hope your appointment was OK otherwise. Hospitals are so noisy and busy it's tiring just being there.

@TodayIsatrickyone hopefully being calmer helped your test. It will be good to get the result. I am supposed to have an echo cardiogram every few years but haven't been called since covid. They've never found anything worrying. I first had it because my cousin was diagnosed with Hypertrophic Cardiomyopathy and there was a suggestion his relatives should get tested. We lost a few members of the previous 2 generations to sudden heart deaths so it's good to keep an eye on it.

Evening all. Definitely with you on the adrenaline surges - can feel 'ok' for a certain amount of time then crash at some point afterwards. I think I was doing a lot of that pre-Christmas when I thought I was feeling better but really wasn't.

Busy day at work - we have our annual conference coming up soon, which I've basically organised and now am not going to (although there is an online element to it, so I will be looking after some of that, but from home). Feels weird, but I'm not even going to risk the adrenaline surge/ crash pattern for that. My new fit note has basically said "no work travel" anyway.

Confirmed with the GP today that I wanted to be referred to the Long COVID clinic, and I can see on my record now that's been done.

@martha79 that sounds sensible. Glad your GP has referred you to the Long Covid clinic, hopefully they can guide you.

Home from work and in bed with a cuppa and a hot cross bun! Had a craving and had to stop and pick some up as I passed M&S on my way home 😋

Shattered as usual on a Monday. Will catch up with the Pottery Throwdown final after tea (although I already know who's won 😡) and then an early night 🥱

Have a peaceful evening all 💕

That’s good they’ve found nothing worrying @TeaAndStrumpets but always good to be checked if there’s a family link. My relatives all had to get checked too but seems it’s only me that’s affected.

Mines a congenital heart valve problem that I’ve known ( well for 20 years) will need to be replaced at some point but hopefully not just yet! I think that’s why I’ve been so stressed since the fainting incident last month. I will feel better I think once I’ve seen the consultant and had results explained properly. She did say today she’d see if they could maybe do a tel appointment earlier or something.

@TodayIsatrickyone yes a telephone consultation is much less of a faff, and you can write things down.

Envy you the hot cross bun @Swanhilde but sounds well deserved!

Absolutely. Its the adrenaline. It can get me through a lot but the price I pay is high. Hits me like a ton of bricks

Hope everyone is feeling relatively ok.

I had a busy morning with a tip run, a couple of shops for essentials and pharmacy trip.

Im overdoing it a bit now so trying to build in more rest but its so hard when a lot of these things have to be done and are already way overdue. I seem to be in pain more than fatigue and my sleep has got worse. Maybe it's my Fibro flaring rather than the long Covid.

Still got a dog walk to do and I just want to sit and watch TV.

I did buy myself a massive Easter egg though! Looking forward to that at Easter 🐣

@martha79 hope the long Covid team is helpful. My local one shut a couple of years ago but I have learnt they have just merged with another team and they can still provide support when you self refer. I may get on to doing that.