What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

Oh that is so awful @ForLoveNotMoney I hope you find some survivors.

Rainy here, been trying to read a book called Wintering, anyone read that? It's quite good.

Thought about ordering a pre-packed Christmas dinner from Cook, which doesn't seem more expensive than in supermarkets really, but they had sold out and DH said he and MIL will do most of it. It's basically a roast really anyway with extra bits, not that bad

Feeling a bit anxious over Christmas and people asking about gifts etc, it's a bit of a fuss with DH's family and they want to know exactly what to get which I think takes the fun out of it a bit. I think it might be an anxiety thing so trying to be patient.

I think the gabapentin is helping me a bit with the ME / CFS and pain, I was given it for neuralgia after shingles but think it is quite calming although didn't like pregabalin. Still have co-codomol as well for pain flare ups, I think DH is a bit concerned I am turning into an addict (not helpful really)

I hope everyone is remembering vitamin D with these nasty bugs around x

Ok, aquarium update!

So most of my fish were dead (3 tetras left)
All bar 1 snail were dead (I’m not 100% the remaining one is OK but it doesn’t smell dead so we’ll watch and see!)
Then all my shrimps made it!! My shrimps are my absolute favourite and after I started emptying the tank to clean it I could see more and more of them ❤️
So it’s been cleaned out leaving as much of the good bacteria I can, put back together and treated with a stress coat and I guess I just wait and see if it recovers 🤞🏻

Before and after pictures as it’s literally taken me hours and put me into negative energy today but my surving critters have the best chance ❤️

That sounds a horrible welcome home for you, @ForLoveNotMoney! I really hope you found more survivors than you expected and that restoring order hasn't taken too much out of you.

@Orangesandlemons77 I LOVE that book and her other one Enchantments. In fact, I just bought Wintering for someone for Christmas. It's just so gentle and meditative and speaks so much to me with MEcfs, though not exactly about that. Ohhh let me know what you think of it. She has a podcasts too. She's fab. I'd like to be her friend 😁

@ForLoveNotMoney how upsetting for you when you're already coping with a lot.

I'm glad your OH appointment went well, @FurForksSake; I'm glad they're being supportive. Good luck for January!

Ooh this looks a good place! I have various autoimmune and neurological issues with a variety of diagnoses over the years. ME is one of several recent ones.

Actually I think recognise some names so I might have joined you lot before, but my brain doesn't work so well sometimes. I have probably forgotten 🤦

Sorry to hear about the fish @ForLoveNotMoney

I also love the Wintering book, @Orangesandlemons77 Must dig it out. I will also find her podcast, thanks @MewithME for the recommendation.

I am home from work and in bed with a cuppa. Having felt better resting over the weekend, I am now shattered again. Two more days to go ...

DH has baked a fresh loaf, so I'm going to have that and cheese for my tea. Need something simple and comforting.

Have a restful evening everyone 💕

I've found her podcast, it's called The Clearing. And her two books are available as audiobooks on Spotify, so that's me sorted for a while.

Thanks again @MewithME ❤️

Ooh I’ll listen to that podcast.

I am done in. Occupational health, hydro and physio. Hydro again on Thursday and then a break till the 30th for all that. Well seeing the physios not doing the work.

He pulled my leg and manipulated a lot as he feels I’m beginning to contract. I enquired as to whether one of the children should perform this in his absence and he nearly has a fit. Apparently with my hyper mobility only an expert must pull my leg 😆

I'm also enjoying the Wintering book, I read a bit to DH over the weekend and he liked it too. Which surprised me a bit. I love the way she goes from one unusual topic to the next with personal stories woven in. I didn't realise dormice hibernate, and the stories of the Blue Lagoon in Iceland made me want to go there. I also like the way she's honest but quite positive as well.

I must check out the other book and have Spotify so will check on there, thanks.

Quiet day here, have not done much. Had a bath. Tidied up a bit, Dh did some too.

MIL is tasking me with buying Christmas presents from her to DH and the DSs which is a bit annoying as more mental load I don't need. It involves asking them what they want then getting it online, delivered etc. Hmm. I'm trying to have patience though, keeping it simple. It's just a faff, on top of the other Christmas stuff.

Have the last of that fatigue course on Friday as well. After that, there is a follow up in six months, and they are doing an online sessions for friends / family in the new year. which I am trying to persuade DH to join. We'll see.

@TeaAndStrumpets I don't know what the tooth problem is. I have had terrible teeth for years- too much sugar and poor self care.
Earrings still missing 😪

Aw @BerfyTigot I lost some of mine and they turned up ages later in my makeup bag. I swear I checked it!

Hello all knackered Christmas warriors.
I went to the garden centre with DD1 this morning, which was lovely, but required a nap this afternoon.

It really is take it day by day at this time of year, isn't it?

That's awful, what a horrible return home from hospital when you need to rest and recover.

I had zero pain today and some energy so of course I did so much house work today to try and catch up, tomorrow I will probably suffer for this. But on the good days which are rare the feeling of productivity gives me is just too hard to resist!!

My late brother used to eat sugar sandwiches when he was a teenager but never had a filling in his life! I think it's just the luck of the draw, really.

Dressing gown pocket?

I did far too much yesterday and spent the night in pain and with constant toilet trips. Feel shattered today so have gone straight back to bed after sending the small one on his way to school. I intend to stay here for the forseeable and then maybe start looking through the gifts I’ve bought and check I have everything.

i don’t feel at all Christmassy this year and feel I am letting my son down a bit but trying to be positive and get this flare under control.

After Christmas I need to start to think about work and if I need to make changes in that area 😫 But today is for rest.

Aw bless you, I hope the time in bed this morning helps you recover a little.

Hello, sorry haven’t read whole thread but my knee has frozen today (just slight movement)

I stopped taking my immunosuppressants because so many people I know are sick at the moment and don’t want to spend Christmas in hospital (last year we were there at Christmas for ds who had a raging fever although we were allowed home after calpol and a five hour observation so not in overnight.) Year before I had Covid badly at Christmas and just wanted one year without sickness, but now my knee has frozen!

will read through now,

We made it to M&S and looked at the cafe but I was just too tired and sore. Did manage return and collection though.

@ForLoveNotMoney Today is for rest resonates with me. Though I have a food delivery and physio coming later.

Agree with @FuzzyPuffling saying that at this time of year it's one day at a time. I always feel I'm doing ok in the run up to Christmas, but then by boxing day I'm ready to kill the whole family 😬

@TeaAndStrumpets I've given up trying to find the earrings- they'll probably turn up. I'm just berating myself for my inattention. I'm always losing things 🙃

Im rather shattered today but have managed to put up the Christmas 🎄. Will decorate it when I bring my 97 year old dad down this afternoon. In between I need to take my car to the garage to get it fixed while I wait. Foresee an early night tonight.

Oh so true about the run up to Christmas! I have been getting updates on DGD (10 months) who has been poorly for a week. She's been to the OOH clinic twice for a very high temperature, once also for a rash that thankfully didn't last long. Last night temperature back to 40 and constant dirty nappies, so DD has got her a GP appointment for this afternoon. I was awake last night worrying.

So at 9.30 I got a photo of DGD beaming ear to ear and covered in breakfast, a miracle recovery! I don't think I'd have young children again if you paid me a fortune. My nerves couldn't stand it.