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.

Plan for today is school run, chemist for sons medication, very basic housework just to keep things ticking over, rest. School run again. Take son for a haircut. Epsom salts bath. Dinner (which husband will cook when he gets home from work), don't move for the rest of the evening.

Good plan @Realisation14

Mine is school run, back here... working from home. Will try not to be too intense with my massive to do list. School run again, pop to shop on way back for bloody packed lunch stuff then I'll lie down before making tea. Then back to bed before sleep.

The usual daily grind. So nice working from home though. My internet provider has told me they're doing work in my area next Tuesday when I wanted to work from home. I'm already in the office Monday.... I really didn't want to go in Tuesday but I can't stay home with patchy internet 😭

Im going to the last home cricket match of the season. I can manage the walk to the bus stop, and to the ground the other end. Tomorrow I expect to ache from head to toe.

Walking around the grounds of our local stately home if the rain holds off keeping my creaky joints moving! Maybe nipping in to their cafe for a cuppa and piece of shortbread.

Ohh hope it isn't soggy where you are @CharlotteCChapel !

@CandidOP living the dream. I'll be with you in spirit. Sounds like my kind of day. (Vic sponge and flat white for me) 😊

I get the sore throat and also sinus pain and tend to take co-codomol and rest for it. They want to take me off the co-codomol though. / cut it down. Think they worry I am addicted to it (as does DH) but it does help.

I think they do this automatic meds review when it is your birthday, with a pharmacist at the GPs so I will see what they say then.

I don't have narcolepsy but I totally understand how exhausting too much rem sleep is. I always dream vividly but about ten years ago I went through a horrible phase of excessive rem plus sleep paralysis and waking dreams....it was horrendous and I woke up feeling a lot more tired than I had prior to going fo bed. I also felt ungounded and freaked out and like I was living in two realities.

I’m in the office today. There’s a part of me that likes it because it makes me feel normal but come 2pm I’ll be wishing I was back in bed

off the antibiotics now for my UTI but it’s definitely not right - I only hope it goes away properly and doesn’t come back again!

I also tend to get insomnia when I’ve done too much - melatonin has been a game changer for me (though it doesn’t stop me waking up at 3/4am, I do sleep better for shorter periods!)

Well my chronically ill friends... anyone else hating the new MN colours? It's not soothing 😞

You can change them by going to settings, talk settings, and scroll down a bit. I’m back in green.

Sorry, no I’m not. wtf mumsnet?

Yes I am but it’s such a pale green I can barely see it.

Settings ->More Settings->Talk Setting -scroll down a bit-don’t forget to hit save.

Hi, I’m new to this board but not new to chronic illness.

Lay in bed, watching Wife Swap on youtube.

Very tired today. Currently on holiday and spending the majority of tbe time in my hotel room lying down. Yesterday, I went to visit DC2 who is on a student exchange programme and studying abroad for a term. It was lovely to see their new university, which is very beautiful, but it really wore me out.

DC2 is coming to stay in my hotel today. We are taking a brief trip out but we will have to take a taxi, Public transport is very good here and costs next to nothing but I just can't manage the walking. Anyway, at least I can do some stuff, so I need to focus on that.

I’m tired today. Had a bad night as I fell asleep then got woken up and took hours to get back to sleep and then woke up at 3. I cannot cope with a bad night at all - just one and I’m absolutely finished. So tonight I will take a phenergan which will totally knock me out as generally once I’ve had one bad night, they just continue grrr!

luckily nothing planned this weekend (not that I ever have anything planned anymore) - but looking forward to getting some more rest

Anything that helps?

Sleep helps me so much but I sometimes get terrible insomnia. Take magnesium glycinate. That does help.

Lemon, turmeric, ginger and honey as a drink instead of more supplements.

Vagus nerve exercises done everyday. Several stretch’s, breathing exercises and tapping. Takes about 15-20 minutes in total.

Very dark chocolate when my tongue goes smooth and painful in patches.

Iron supplements.

I’m also putting on weight again. I find it so hard to keep my weight under control when I can’t exercise and I love my food!

Today will be rough - my DP was admitted to hospital yesterday eve with hypertensive crisis , 2nd time in a month. I've been awake most of the night in case of developments. Still waiting to see a Dr but at least out of the corridor and into a bay .. .. im tired, aching and anxious about him.

@Whatarethese1 thanks - I think mine is a combination of ME bad sleep (always worse after a busy day) and perimenopause. I’ve tried all the meds and the only thing that really works is melatonin but only for a bit. I do love those vagus nerve exercises though!

@dizzydizzydizzyhave a lovely time with your dc!

Can I join in for a vent please? It’s very much a first-world problem, I do apologise.

I’m on holiday in Europe for a big birthday. We’ve stayed in 5 different cities over 3 weeks, and I’m crashing so badly (Mecfs). I haven’t moved out of bed for half of it. I’m in so much pain and completely wrung out. I’ve tried really hard to pace but I’ve really overdone it.

I feel unbelievably guilty because DH has been sorting this trip for the past year, organising all kinds of lovely things for me and it’s been such a waste. He’s a complete treasure. Our DCs are flying out today for the weekend to spend my actual birthday with me, and I just don’t feel up to doing anything. I just want to sleep but I can’t because I’m in too much pain.

I’m so angry because we tried really hard to prepare for this. I’ve been resting for weeks now, we’ve moved mountains to make sure this didn’t happen and it’s made no difference.

It feels like it’s cemented the fact that I am actually fucked. And not only that, now I am officially old and fucked! 🥳

I have a busy day today. I'm about to have a shower, then I have to pack the last few things for my holiday (meds, creams, toothbrush etc.) Then at 9.45 off to an appointment at the breast clinic at 10.30. After that we're driving to the place where we're holidaying for the next week, picking up our click and collect shopping and probably a McDonalds on the way.
When we get in my DH will remake my bed with the soft foam mattress we take with us, the chilled shopping will go away, and then we will both have a couple of hours sleep.
If I feel strong enough when I wake up I will then go for a swim in the heated indoor pool while our ready-meal is heating up in the oven. The pool is private and only a few steps from the door of our holiday place, and we are allowed to use it any time we like, so I'm planning on swimming at least twice a day if I can. It will be good for me to get my joints moving.

A friend is taking me to see relatives. I get horrendously travel sickness in a car so I take a pill which makes me feel even more tired, but at least not sick. Joys!

Food shopping arrives first thing so packed that away, clearing out stuff from the fridge as usual.

Now back in bed. DH seems grumpy. Had suggested we both try swimming later but I am not sure about that now.

At least it looks sunny out.

I did this ultra gentle pilates class yesterday (most were in their 70s) but am suffering today from it. Didn't sleep well either. Hope for a restful day for everyone.

Morning all.
Still exhausted here. I'm also having to deal with the "soil pipe crisis" of 2025.

I'm in the middle floor of 3 flats and there is an internal soil pipe that runs through all three. It has been leaking at my level ( probably since 2011 when the management company bodged a repair).
My neighbour downstairs has had part of her kitchen ceiling come down.
So we are in constant exposure to foul water and mould. It is likely to be next Friday at the earliest before they can fix it!
They have to take out panels in kitchen and bathroom, temporarily remove the loo and also get gas company to cut off gas while the do the work as the gas pipes run very close to the soil pipe!

The goods side is that having to move loads of stuff out of the kitchen and bathroom might incentivise me to have a good declutter at the same time!

Hey @MewithME thank you for this thread. I also have ME/CFS.

Really struggling at the moment. Obviously with my illness, but also with what I see is the lack of care from those around me. Without wishing to sound like Meghan Markle, nobody ever asks how I am.

I have a feeling I will be utilising this thread! To let of steam and perhaps feel sorry for myself at times. Though they are good days TG and I will try and share them too.

💕 to everyone struggling today. I’ve read some of the last few posts. “Old and f*d” I commiserated with. I’m early 60s and seem to be struggling more at the moment; though maybe luckily less commitments I suppose.