What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

I’m still really unwell and struggling with gut problems. All seems connected with dysautonomia (that you just mentioned, @MewithME!), vasovagal syncope, pain, and gastrointestinal distress (possibly prostaglandin related, who knows?)

I’m trying to prepare an e-consult for the morning that sits between showing some useful awareness of symptoms and likely causes / treatments, and being an annoying ‘google-loving know-it-all fuckwit’.

I am a scientist but not of the mysteries of the human bowels …

I’d say just from conversations with others with ME/ CFS over the years, people tend to be sensitive to sudden changes in weather which can make general symptoms worsen or extremes of temperature. And as @MewithME says, problems regulating temperature which definitely was an issue for lots of us in the recent heatwave!

Hope symptoms settle soon @JewelleryCat

Sorry to hear that @Theautumncrow good luck with tj e consult tomorrow

Edited my post and still cant spell The 🙄😂

Thank you @TodayIsatrickyone weird thing is, I felt ok in the heatwave. I hated it but I didn’t have this weird temperature thing so maybe it’s a delayed thing because I have been suffering with fatigue over the last few days

Good luck @TheAutumnCrow

I don't think it's a delayed reaction to the heatwave. It's more likely you're experiencing PEM/bit of a crash hence the fatigue.

So if you're v fatigued/experiencing pem, your body is going to struggle to function just now which means all sorts of systems in your body will be out of whack. I'm in a bit of a crash so my gut is off just now, I've got lots of buzzing and nerve pain and twitches.... My tinnitus is worse and yeah, heat regulation or hypersensitivity could be because you're nervous system isn't working properly because you don't have enough energy.

We need to power down and get a reboot after some rest 😉

Absolutely this!

Thank you @MewithME and @TodayIsatrickyone you two are probably right and I’m experiencing PEM even though I’ve not exerted myself at all because of how I’ve been feeling. I haven’t had any energy for a while, I can wake up with no energy and then I do nothing for the whole day because of it and it doesn’t even matter what time I go to bed either or how much rest I get. Fatigue is the worst

@MewithME I know where I am with dullness. Not sure I can handle too much excitement....

I'm currently waiting for a person to take away my old washing machine and (hopefully) install my new one after the delivery drivers on Saturday decided it wasn't their job.

Still recovering from my birthday party and not because I am hungover, just exhausted. I was 60 last week and had my party on Saturday. I had made homemade decorations and cake and also did the buffet. Friends also bought homemade cake so we ended up with 5 lots. Ended up with 29 people, 6 cancelled the day before or on the day. Was such a lovely day, friends helped, my DS and his GF ran the bar. DH was absolutely brilliant getting stuff ready.

it reminded me very much of how energetic I was when I was young.

Morning all. Feeling okish at the moment. Felt rough at bedtime so I am quite pleased what this morning has delivered! Not sure if will be called into work- need the money, but wouldn't mind lying down and reading. I will be pacing myself, whatever I end up doing. The person who.mentioned Galaxy in the fridge made me salivate!!! A close second for me now is Dairy Milk with bits of Dime bar in it. Shame I can't eat much chocolate as it ramps up my pain. Be kind to yourselves and have the best day u possibly can.

Do u remember in the old days when you used to receive a massive box of washing powder with a new machine?

Oh no. Every time I bought a machine you had to pay extra and tick a box for removal I think. If you can get someone to move it, our scrap men always collect them from the kerb. People often just put a shout on FB.

I woke stupidly early with the light. School run in 15 mins and I am not yet dressed and haven't made ds packed lunch yet. I had better get a move on....sigh.

It wasn't to be. At least I got an explanation that I can understand. I now have the job posted on check a trade.

Hope you can get it sorted soon @EpicGem

I just can't be bothered this morning. Slept OK but struggled to get up and I'm not dressed yet although I logged into work an hour ago. Thankfully just one meeting this afternoon and my counselling appointment. And more house-hunting nonsense. Yawn.

I can't be bothered either @martha79 . I think it's the fatigue but I feel really apathetic. Think I'm a bit depressed perhaps...or maybe just burnt out.

I might go back to bed and ignore work.

@JewelleryCat this from @MewithME says it all really. There is no logic to it but you do start to see patterns. But it still fools me every time, and I get tricked into making myself worse!

This sounds miserable. Hope you get some answers soon.

@TeaAndStrumpets ...yep and just cos you know the theory doesn't mean we always manage to put it into practice. I'm a mess just now!

How frustrating! This seems quite common, just bad communication.

We last had a new kitchen when dinosaurs roamed the earth, and we were talked into hiding the washer and dishwasher etc behind a run of doors in a frame. It did look nice and neat because our kitchen is not big. It is fine until something goes wrong, then DH has to practically dismantle the frame to pull the machine out. Chaos, tools and cabinet fronts everywhere. Not our best idea!

Actually undoing and redoing the pipes is no big deal so you'd think the white goods dealers could find a few more skilled people.

@BCBird I remember! Yes dishwashers too, just to get you hooked on Finish.

TBF it would be a waste giving me washing powder as I hate them all, but admittedly I am not their target market. I am permanently shocked reading on MN about how people love to douse their laundry in fake smells. I can't walk down the detergent aisle in Sainsbury's without getting a raw throat.

(Rant over!)

Happy 60th! That really isn't old these days. Glad you had a super day and now you can rest for about a year ready for your next birthday 😃

I'm sure someone will oblige. Last time DH and a friend changed the washers over and took the old one to the scrap metal place. They got about £4 for it!

I guess I’m still trying to see patterns but it still fools me as well. I wish there was logic to it, would be easier to figure out

Afternoon all, currently sitting in the garden with a naughty dog who slipped her harness on a walk with DH and ran back to me! Guess she had a good run but not ideal! Obviously not been able to go on a walk with her since the stroke though I’m hoping to try the scooter soonish on a better day.

It’s so hard to figure out @JewelleryCat I’ve spent so long in the past trying to work out what caused a particular crash but eventually came to the conclusion that sometimes there’s just no rhyme or reason. You can be doing all the ‘right’ things and sometimes it still just happens.
I think for me learning to accept that this illness is a fluctuating one and can be relapsing and remitting can sometimes make it a tad easier to understand crashes.

Happy belated birthday @ViciousCurrentBun My DH was 60 last week and it felt like a big one! Glad you enjoyed your celebrations at least.

Have a peaceful day all 😊

Afternoon

Feeling a bit demoralised today.

I cope most days but a spot of unexpected need today has reminded me that being reliant on other people for daily survival and basics makes me feel shit. Is what it is though