What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Christmas presents, that is very organised! Must be nice to have that done in advance..come to think of it. Good plan

I think <whispers> I have finished the probate paperwork!
I'm going to celebrate by not forcing myself to cook tonight!

Tilt table test. That was fun. I managed to.provoke urgent whispering between the nurse and other person. V low blood pressure, but not pots. No I just go dizzy for some other random reason not yet known.

I had a nap today. Need to get up but feel shit and weak.

Hello all hope it is ok to join.

NC for joining this thread. Had pneumonia in the spring and have had terrible fatigue since. Awaiting referral to clinic.

Started off 2025 with lots of plans and now can’t even go for a walk. Tried today and have been floored whole day long. Have a young dd so mum guilt and starting to feel mentally very low.

Have read all your posts and, selfishly, it is comforting knowing I’m not alone.

@Orangesandlemons77. Two reasons for starting Christmas this early... one - it spreads the financial load, and two - I can't guarantee how I will be feeling closer to the time so I start it early!

Plus - and this is a bonus - I LOVE Christmas.

Welcome. I only pop in and out as I forget about the thread...chronic illness!

Busy busy day at work. I had ordered takeaway...too tired to cook 🙈

I did the text rebooking thing for my ECG and tried to ring at least 6 times and just kept getting some woman's voicemail at the hospital.... So I'm now worried they'll be cross if I don't go tomorrow because I don't know if they've got my postpone message! I've done what they asked though. I know I'm not up to it though.

My visible gadget told me I've done twice my budget today and the day's not done yet!

I neeeed a quiet one tomorrow.

@Ohmondeus hey there, of course join in. We're here for each other as people who 'get it '. Have a guilt free moan anytime you like. It's tough being a mum of little ones (and big ones! ) but chronic illness on top is super hard. We all do our best with what we have to deal with on top. Be kind to yourself.

Hi have just found and joined this friendly group hope thats okay. Ihave fibromyalgia and chronic fatigue so can totally relate to all of your messages. Today has been a slow day but did manage some ironing so I suppose thats good. Know we're all meant to be pleased with doing something small each day and to pace ourselves but its good to hear others sometimes feel the same way and we're not alone.

May I join ?
Long term crap health sufferer, various diagnosed including asthma, rare and untreatable spinal injury, arthritis in various joints, bladder cancer (currently in abeyance luckily) severe slow transit constipation that is looking like it may need surgical intervention , Polycythemia Vera, Pernicious Anaemia, strange allergic reactions (possibly Mast Cell Disorder but not being investigated) blood pressure and blood sugar but can't find a cause and the disabling fatigue that comes with having all this.

life gets a bit trying at times and i'm still working but do the absolute minimum I can get away with and often from my bed...which is how I spent the afternoon. Tomorrow I will probably phone in sick as I feel yuk :-(

Welcome new posters, great to have you on board this thread

@dilemmadelilahI also have started Xmas planning for the same reasons. I can’t do it late in case I don’t have the energy so best to get ahead of the game!

@mewithmeit can be a real nightmare getting hold of clinics can’t it!

I am on day 3 of antibiotics for my UTI from Boots and whilst it’s definitely worked, I am concerned it will come straight back once I’ve finished. I also have to eat with these antibiotics as they make me sick otherwise which I have used as an excuse to eat nice breakfasts every morning (as I would usually skip breakfast). I am meant to be watching my saturated fat as I have high cholesterol but I had a lovely pain au chocolat this morning that I’m telling myself was necessary!

Hi new posters.

Still in bed here. Drinking coffee. It seems a bit less windy than yesterday which is good. it was blowing a gale here!

Got my blessed period this morning, which is annoying as hoping to try for a swim this week. I used to be Ok with swimming and periods but less so these days not sure why.

Anyway, hope you have a good week and sharing here is helpful, You can say stuff you don't want to to those around you sometimes! And it can be useful sharing with people who get it.

At work like always! i'll go home and crash later, go to bed at 8 then wake up and do it all again tomorrow! Also hoping my anitibiotics kick in son, judt to top everything off i developed a UTI, so that just compunds the generall exhaustion!

Hi new posters!

I'm slowly recovering from a m.e crash combined with a mcas flare up and my period. I hope once the mcas attack is over I will be back to my baseline

Currently in bed with cat and dog for company.

Hi all, just found this thread. I am exhausted today. It’s nice to know I’m not the only one who feels helpless in the face of chronic illnesses.
I’m sat in my car atm and I can’t even open the door.
Confirmed diagnosis of: psoriatic arthritis, SFN(this is the hardest to deal with) Sacroliitis, fibromyalgia. Minor confirmed conditions: Gilbert’s syndrome,Tietze Syndrome and of course fibroids that can’t be operated as there’s the risk my womb will removed along with them.

Anyone else with sfn? Idiopathic sfn

wishing you all a good night.

That sounds a lot to deal with @Gioia1

I don't know what sfn is unless my brain fog is making me especially dense tonight... always a possibility 🙈

Hope you sleep well.

Thst sounds so hard @gioia1. I can definitely relate to the exhaustion..

Today I need to take my cat to the vet for her booster jab. I'm dreading it as she's the anxious type who views her basket as a torture instrument. I've booked a taxi and feel worried that I won't be able to get her in. Then there's the carrying her inside. I've done it before but I'm weaker after a flare. Just hoping for the best reslly. Taxi waiting so we can come straight home.

@Gioia1that does sound a lot. I have only v mild psoriatic arthritis (probably spelt that wrong) so I can’t quite imagine all those conditions together.

I had a terrible sleep last night as I woke up with a throbbing pain in my hip. Last day of antibiotics yesterday. I always feel miles better when I’m on antibiotics and my ME returns to normal when I stop. Apparently a few people get this too. I wish they would hurry up and find out what causes it as it must be something to do with the immune system responses.

Got up feeling okay after eight hours sleep. Still not getting much deep sleep, unless my watch doesn’t register much of it. Then in a tail spin after some difficult issues. This condition has stolen my resilience when I needed it the most. Could always bounce back before.

@ChampagneRose I feel much worse on antibiotics but I rarely get viruses so my immune system is definitely in overdrive somehow. It was flu that triggered it many years ago and it did something to my immune system.

Sorry to hear about the multiple illnesses people have, must be so hard and knowing what it causing which symptoms as well...

Woke up early as Dh had to go in early for work, he then got stroppy with me for being up and having my coffee! (think he is just stressed, I did say something a bit irritating as well)

He was also being annoying about my meds saying something about how I just take gabapentin automatically and insinuating my pain isn't that bad...hmm well they don't tend to give it out willy nilly do they?

Was thinking I might get some sleep when he had gone and DS left for school but that has not happened unfortunately.

Sorry to sound a bit moany. I kind of feel like I take on his stress at times like it is catching.

@MewithME @ChampagneRose @Idontknowhatnametochoose thank you.

Sfn is small fiber neuropathy. Mine is idiopathic meaning I didn’t get it as a result of cancer treatment or diabetes. I actually have a mutation in my genes that causes it. Neurologist worldwide still do not know the best way to treat it.
It’s a lot to deal with. I’ve always just soldered on. Looking back, I was constantly sick as a child. From migraines with nausea and flashes of light to pneumonia etc.
But, I am very very resilient and hard working. I get on with life as I have two little children(2.5 & 4.5). I try to remain joyful which helps.

currently working with a rehabilitation specialist. They expect me to only carry out one task a day and rest the rest of the day. Well, that’s impossible.

We are alive and that’s what counts!

So sorry to hear about unsympathetic partners, good luck to all those on antibiotics.

I think we all deserve pain au chocolat @MewithME 😆😆. Every morning.

Today I'm looking after dad, food delivery and his cleaner coming. I'm going to try to do some sewing today. Usually I get about an hour in the afternoon, when I do his paperwork, but I'm also trying to do "something" for me. Sometimes it's a nap too.

@Gioia1 i love that you are trying to stay joyful 🥰 What brings you joy?

Hope everyone has a good day