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. 🌲🌲😴🤕🤗

Chronic lung disease here. I finally recovered from flu but just had a booster jab and am so tired and unmotivated. Keep telling myself I will get up.

I need to put the dishwasher on, put the laundry on, have a tidy round, wash my hair, make lunch.

Does anyone have any advice? Each of these feels completely exhausting.

@BlueberryOats don't tidy. Leave that for another day. Get dry shampoo for days when hair wash is too hard. We have to be so good at prioritising.

Do everything in stages. Do a bit. Sit down. Don't push until yorue totally knackered. I know my illness is not same as yours, but I think some ways of doing things would help a lot of conditions.

With ME, the ONLY 'treatment' we have is pacing. It is bloody hard but when I'm really bad, I try and micro pace. So going upstairs is two steps, have a rest, two more steps.....

I had a lie in after DH brought me a cup of coffee and my meds befire he went to work at 7.

Finally got up at 9 and had a shower, have a very short pixie cut after losing a lot of hair so washing and drying it is easy.

Had to sit down a while after that so read for a while, then decided to wrap all the Christmas presents. I do like the look of the BookNook, wouldnt mind one myself.

Lunch was a sandwich and an apple. Dh has put the slow cooker on with Chicken curry in it for tea. When im up to it i make dump bags of slow cooker things, putting meat veg and seasoning/ spices in them and freezing them. Then all we need to do is defrost and put in add water or stock and tuen on.

Hadn't heard the term 'micropace' but it's absolutely what I do. Take 3 items out of dishwasher and then rest for 10 mins.

Yes. It takes all day, but you've done it, and one day you realise that you can take 5 things out before resting.

Same with cooking. Get out pan and utensils. Rest. Then ingredients, rest. Etc.
But the best advice I can give is to lower your standards. A lot!

I might have made it up @BerfyTigot not sure!

I did the Xmas tree in stages. Got it out last Sunday. Monday I did some of the branches. Tuesday did the rest and started the lights... Finished it weds with decorations.

Can I join? (Might have posted occasionally before, can’t remember!

I have a weird nerve condition that’s really rare, similar symptoms to MS, but doesn’t go into remission really. I use a wheelchair to go any distance and need my walking stick even in the house. I have 3 grown up kids, ds (23) still lives at home and is a fantastic help to me.

Today I got up and went to church and was really glad I did, lots a Christmas carols and lots of friends. I don’t always make it but was glad I made the effort today. Now exhausted. I went to the hairdresser yesterday and there was lots of walking so my legs are a bit wobbly, but I’m pleased with my new style - shorter so easier to manage! Dh went and did the food shop so I’ve been on the sofa beside the newly put up Christmas tree which has been nice!

Its my birthday on Tuesday and dd1 and her partner are taking me out for brunch, so I’m resting a lot tomorrow so I have the energy to get in a taxi and go (I can’t drive, my numbness means I’m not safe!).

“nice” to chat to people who understand, though it’s a shame we have to, it would be good if none of us had a chronic illness!

Had banana pancakes for brunch, DH made, now DS and his girlfriend are helping decorate the Christmas tree. We have Abba videos on so quite pleasant.

Feeling tired today and quite headache, so leaving them to it but enjoying listening in.

I went out with MIL yesterday so still recovering I think. Hoping for a good day for all

Well, as my chronic illness is well controlled with my meds we went on a long awaited weekend in a beautiful Derbyshire cottage intending to do some lovely walks. Instead I came down with a heavy cold and spent the weekend on the sofa under a blanket in front of the log fire. Sounds lovely but when you have a raw throat and chest, a pounding head and a terrible cough believe me it isn't. Now wondering how on earth I am going to get the rest of the Christmas stuff done and get ready to go away to Devon for five days!

Hi to all new posters!
Headachey and tired today, watched Newcastle match with DH, took a dog for short walk, now resting while DH takes another one (we have a few!)
The control on my XL heated throw somehow has given up overnight and of course is out of return window. Have ordered replacement controller, can't face complaining and pushing for return/repair.
Have sent some charity animated Christmas cards by email instead, donated and it lets you send up to 100. Have sent 3 dogs trust ones, I really don't know that many people!
No wrapping to do, it's just me DH and we've spent a lot lately. MIL lives with us but with the vascular dementia she has no clue what day it is. Possibly will get her something new to fidget with.
More washing to do as ever.
Worked out I have 7 days left to work before 9 days off, has come very quickly. Lots of thorough cleaning, sorting and decluttering to do so the time off will be good to pace it out.
Love to all xx

We’ve just had dinner, dh has become pretty good at roasts, but I did this one. I don’t mind making roasts as long as he takes over when I can’t and he serves up.

DHs mum has a swollen liver and her and her partner have decided she’s dying. Dh has managed to reassure, get them to speak to an online gp and it seems they have a plan. It is likely due to all her medications.

Pic of dinner

I've just discovered this thread; I have ME and have been pretty much housebound for a good couple of decades or more.

I'm feeling pleased with myself at the moment as I think I'm just about organised for Christmas! I've now got a pile of parcels waiting for the postie to collect tomorrow, along with the final piles of Christmas cards, ready for someone else to post / deliver.

Hopefully I've left myself enough time to recharge and recover ready for Christmas itself.

Excellent plan @AllSerene it's the only way to get to Christmas without crashing. I am super early every year. Couple of decades ME/CFS too!

Damn, that reminds me...must do some stuffing balls! Wonder what else have I forgotten?

Looks tasty!

These are teeny tiny ones, dh got a huge number from the packet, half are now in the freezer for Christmas Day.

I pushed myself today to meet a friend for a short dog walk. I arranged it the other day when I felt better but Sod’s Law I woke up at 5:30 this morning feeling rubbish. I really didn’t want to cancel and our little rescue dog desperately needs the socialisation with someone who is patient enough to put up with her being reactive. That said she was actually much better than last time so that’s a positive. Took my stool and sat down a few times and DH did most of the dog walking but gosh my legs are agony already. So taken painkillers and planning bed after Strictly results but I did enjoy my brief little bit of socialising!
Otherwise I’ve mostly rested today and had a nice roast gammon for dinner which made enough leftovers for tomorrow.
Nice to see lots of new names on this thread, welcome all. ME and Fibro here for 20 years so I think I’d get a medal in Micro pacing which really is an excellent description of how we get anything done.
Now I need to rest, rest, rest this week, recover from today and save enough spoons to manage my DD’s birthday dinner at the end of the week. Luckily Xmas is fairly organised or what isn’t sorted yet is on DH’s to do list!

Morning everyone, rotten sleep last night here. Have to go to the post office today, get those Christmas cards sent out. Laundry is way behind so really need to get stuck into that today 😔 hoping I have enough energy for it all.

Morning. I’m dreading today. Occupational health call about me returning to work in January, 45 minute drive to hydro, stop in at Aldi for a couple of bits and drive back. Make dinner my husband is dreading. Physio.

flu jab for tomorrow got cancelled. So I officially give up on that. Annoyingly I ordered something to collect in that town, so I’ll just have to wait for it to be refunded as we’re not driving over there for nothing.

sorry for crap nights, ashwarganda, cbd and magnesium have massively helped me with sleep. I have no idea what I’d do with out them right now.

Morning!

Sounds like this is a stressful day for several. Hope things improve.

@FurForksSake sorry about your flu jab. We had ours the other month and it was a shambles. It was disappointing after how well the covid boosters have been organised. Are there any available at supermarkets near you?

@TodayIsatrickyone wishing you a calm week ahead so you can enjoy your daughter's birthday.

@Realisation14 funnily enough I miss doing laundry now DH has taken over, he packs it in so tightly it gets very wrinkled! We don't iron so it looks pretty scruffy. Sometimes I secretly wash and tumble dry a few of my t shirts so at least those look nice!

A very warm welcome to all the new people on the thread!

Morning everyone, I hope all those with stressful/ busy Mondays can get through their day.
Painkillers needed to get me through the night but pain feels more manageable than I was expecting today so I’ll take that. I also use magnesium & ashwaganda for sleep, they make a big difference. According to my Fitbit this week has been considerably better sleep wise which I’m putting down to the HRT I re- started 2 weeks ago. That said I was still awake for an hour or so at 2 ish until the painkillers kicked in but my quality of sleep does feel a bit better.

A very quiet day here. Ive just downloaded a new audio book to help me rest and I’m staying in bed for longer than usual this morning. Dippy dog is happily snuggled in with me so I’ll stay put for now.

I am day 2 out of hospital and trying to sort my house out as it was left to ruin by my sons twatty dad (he stayed a few nights trying to be the hero then gave up and left my son with my sister). I was absolutely gutted to find my pride and joy aquarium in a catastrophic state yesterday morning and can see I’ve lost most of my critters. Did an emergency water change and now about to go up and see what I can salvage 😞 I am so sad about it and really don’t have the energy for what I need to do but I will update later with some hopefully good news of survivors.

Hope you are all doing OK today and can get some peace and rest or anything else you need today ❤️

@ForLoveNotMoney Im sorry that sounds a rather stressful return home from hospital at a time when you need to be recovering. Glad you’re home at least and hope you can find some survivors 🤞

@ForLoveNotMoney I am so sorry. I can’t even think how upsetting this must be.

Occupational health was good, im less depressed which is good 😊 but she doubts ill be fit to go back in mid January and will decide on the 9th January.

That’s good it went well @FurForksSake and sounds like they’re keen for you to be ready rather than rush back too soon which is positive.