What are you up to today if you have a chronic illness? Thread 5

[MewithME]

Here we are again. 😊

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5458553-what-are-you-up-to-today-if-you-have-chronic-illness-thread-4

@Orangesandlemons77 i have never heard of ME/CFS/ASD connection before, and to be honest it doesn't really make sense. Is this another "It's all in your head missis" diagnosis?

Still it sounds as if your GP wants to help. Maybe ask if anyone on your support group has come across this theory.

@Swanhilde beautiful!
@Orangesandlemons77I'd never heard that either but just asked Grok and apparently there is a link between ME/CFS and ASD. "the relationship is complex, not fully understood, and primarily involves overlap, comorbidity, and increased risk rather than one directly causing the other."
Sharing several symptoms which can lead to diagnostic confusion especially in adults.
Lots more to it but not about to post it all here!

In the spirit of ceramics, may I show you a jug I painted not made, just painted) at the local pottery painting place. 😀

Felt rough today after falling back into a run of bad nights. Can't seem to fall asleep till around 3am then hitting snooze and starting work half asleep around 10.30--11 instead of 9-9.30. It's full flexi work from home but means I'm then losing flexi or finishing later. They don't mind but it doesn't look great not keeping to a preferred working pattern.
It's like I'm in bed on edge thinking about things and can't sleep.
Today woke up at 10.30 after turning off alarm in sleep spoke to TL, put days leave in, fed dogs and went back to bed.
Slept till 2pm, cleared kitchen and back in bed with tea and most of the dogs, one of which has finished off my cuppa. We have 3 that love tea!
Neck sore, glands up, wicked headache and sinus pain.
Thankfully MIL sleeps most of the day and DH is up.
Hopefully a rest will help and tonight will be better, I'm drained, worn out and snappy.

@FuzzyPufflingvery pretty!

Sent these off the the kiln for their first firing .... 😬

That's fab - you must have a much steadier hand than me @FuzzyPuffling 🤣

You have a great eye for colour! Really pretty.

Have a look at this. I'm a bit worried they might put it down to that (autism) though. I will see how it goes

https://neurodivergentinsights.com/autism-and-health-issues/?srsltid=AfmBOor7Ne51Emdl1AxF6nUm_2txHWv8RM-z7JCipCc10iS6BgxCbE8s

I love the jug Fuzzy

Gorgeous, love the snowdrops!

Does anyone else get a rash like this? I wonder of it might be something called MCAS. Might ask the GP but don't know if they will know.

I looked down it. TBH I am sceptical.

Could you be allergic to something you're wearing? I get that with wool scarves.

I'm a bit sceptical of how it says it was written by 'functional medicine and psychology' people or something as well. I am just going to see what happens. I mean I guess it could be possible to have both things and them not be related.

I'm not sure, it comes and goes since shingles on the face and the ME / CFS diagnosis. I might just keep an eye on it and see the GP if it happens again.

God knows shingles is nasty enough. Your immune system is probably battered!

Thank you for all your kind jug comments.

I love Swanhilde's proper pottery.

I'm going to read that article linked above now...

I'm not buying it.
Not proper research, just circumstantial. You could probably do such a Venn diagram for any two randomly selected conditions.

Yes, sorry for looking to something a bit random like that. I'm not sure I agree with it either on reflection.

I do notice in groups online quite a few people with ASD seem to have CFS / ME as well. Although there can be autistic burnout to add to the mix too!

Going to cook something easy for dinner now.

I'm not buying it either I think. Yes may be similar symptoms but all too easy to try and minimise CFS/ME.
For me I know my symptoms started after a 2 week viral flu type illness in 2009.

No worries @Orangesandlemons77 . It always makes for thoughtful reading, even if I disagree.

NB: I used to work in neuro research, so I am naturally cynical, unless it's been peer reviewed in Nature publication!

I’m autistic and I do also have CFS. I’ve never heard of a link between the conditions before

Yes mine was triggered by sepsis post surgery and shingles.

I'm unsure about going for the autism diagnosis now in case they disregard the ME CFS. Not sure Mind you I have various mental health issues as well including anxiety disorder and PTSD and depression so it will only add to the mix I suppose! And it's possible to have a mix of different things I suppose