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. 🌲🌲😴🤕🤗

Morning all!

Quiet day for me today, the calm before the storm. Might try to get some food prep done later.
Busy day tomorrow with deliveries. Felt very anxious this morning. I have a lot to sort for my elderly dad with dementia.

But I have already done one thing for me today, which is to hand up a bird feeder in a tree in the garden. I bought it a few weeks ago when i had some energy. Supposed to attract goldfinches 🤞

Morning everyone. Well I slept 12 hours straight last night. So that’s 3 fabulous sleeps in a row of 11-12 hours! You’d think that would go some way to energy wouldn’t you but no, I’m still in bed 😂😂

I do have some motivation today though so going to grab an Aymes shake, eat some boiled eggs and toast and try and head out into the big wide world.

I really fancy a walk and a hot chocolate at my gorgeous local park. My son is away today so will have to be on my own but I think I am ok with that. Stuff it, I’m doing it!

Then I’ll put my feet up for the afternoon before my son gets home this evening.

Will update later if my plan come to fruition!

Have a good day everyone and take what you need to get through/enjoy it x

MeWithME,
I hear you, I see you.
I think Christmas can be a time for reflection for lots of us, especially when those years of excited children are over.
I join you from the Sofa of Melancholy. Not sad really, just thoughtful.

The horror is no TV!

I know it's the world's most enormous cliche but am trying to hang on to Gratitude and Acceptance as Christmas approaches. And remembering that other people's shiny exciting lives aren't always what they appear on the surface.

Yesterday the sun was out and DH and I made it out for a walk. We're both pretty wrung out because of FIL illness but there does seem to be good news there so hoping for an improvement.

I am feeling deep and sad yearnings for things that I can't have, so trying to think of small ways that I might scratch those itches within the bounds of what I can do. I think therapy has stirred up a lot of sadness about my younger years and I'm feeling this urge to be young again and do it right this time. Maybe it's just your standard midlife crisis. If I come here to tell you that I have a sports car and a toy boy, I give you permission to laugh.

I have plumped a cushion for you. You're welcome to join ☺️

I've had texts from my son who is stressed by his Dad today. Sigh. All will be well when he can come home and decompress.

I've got another coffee on the go and sat down on my new chair with a book. Next door must be out. It's blissfully quiet.

@VikingNorthUtsire I think it's completely understandable how you are feeling. It's a kind of grief. There's some sort of venn diagram with mid life, chronic illness and Christmas I think... we're in the middle right now with bittersweet feelings.

I'm going to have a mince pie. That'll help.

You just inspired me to refill our bird feeder @BerfyTigot! Just had a lovely short potter in the garden with the dog and wandered around looking at our borders to see what was coming up. Could hear bird song and was watched by a robin so felt nice and relaxing.
I also noticed how many leaves need raking and weeds/brambles dealing with but thanked my brain ( learned from someone on here!) for pointing those jobs out and said it would be thought about in the new year.

Bang goes my plan to sit quietly with my book. DS has come home early and I am having a full on conversation about Pokémon now!

Waiting for Amazon, I've been the next stop for about 15 mins now while the map shows the sleigh/van faffing about up the road.
New microwave arriving later today too also by Amazon after DH managed to flood ours twice. He's blaming it on the shape of the new plastic bowls I bought so hopefully won't happen again.
Cold, damp day, still in PJ's and electric blanket on settee.
Done last nights washing up and cleaned hob, booked tip slot for tomorrow evening and moved stuff downstairs to sort and pack in car. Really need to do a quick Sainsbury's shop, obviously no slots available for a home delivery and kind of want to poke about a bit in there.
Head still feels heavy and could have done with more sleep. Work tomorrow and Tuesday then off.

For some reason on Friday I finalised my big Sunday Christmas delivery order a day early, before the internet went out that night, that was such a fluke and really lucky.

Yesterday no internet and mobile phone out too so v peaceful reading all evening! This morning managed to phone DD so she helped me get internet on my phone, luckily she has same phone as me. I had switched off something in my panic (or on) but OK now. Need an incompetence emoji.

I can do most things now but it’s awful peering at a little screen so will take an internet break until 23rd!

Best wishes to all !!

Just wrapped DH presents while he was out and realise that, by doing my Christmas shopping in tiny chunks over the last few months, I've bought him the same snacks/treats in duplicate and some cases triplicate. Oops.

Goodness @TeaAndStrumpets no internet, no TV sounds rather stressful. Amazing just how much we rely on them. Good you got your shop finalised at least, that wouldn't be fun on a tiny screen! see you on the 23rd!
I’ve just finished doing mine and I’m not looking again. If I’ve forgotten anything, tough! Need a snooze under the heated throw, it’s turned rather damp and chilly now.
@VikingNorthUtsirethat sounds familiar, at least your DH will have plenty of treats to share!

Quiet day here, still in pjs. We went to a family thing last night with some of DH's family we had not seen for a while, just stayed till 8.30 though as DS was going to something so gave us a lift home.

Had a couple of glasses of sine there, don't usually drink and feeling the effects today. Feeling a bit stressed about Christmas, MIL is staying and been ringing about stuff. It's daft isn't it how fussy people can get about it all.

Would quite like to skip it all but there it is. Will get through it and soon be out the other side. I'm on mounjaro as well so don't even fancy any of it really. Maybe a bit of the actual dinner I suppose, but it has taken away my (usually rampant) sweet tooth.

Evening! Got through the stressful visit with dm and dsd. Sister made an excuse and didn’t come.

I had a weird itchy mouth and throat earlier that made my ears itch from the inside. I took some antihistamine and it’s mostly gone. Don’t know what that was.

Just had a delicious roast pork, love a roast, dh does the veg and I just tend the meat. It was so good.

I’ve been editing my Christmas food order. It’s only £126 and mostly fresh bits, no meat as they’ve been acquired separately.

As usual I’ve read but not got tbe brain power to respond individually. Going out really knackered me and the car ride was very sore. Quiet days ahead.

@FurForksSake what had you eaten ? I'm a food allergy sufferer. That sounds like a reaction. I think it's important to note what it could be that set it off.

My Christmas food order is the most money I have ever spent and I don't even know why. Hoping it doesn't arrive and I've massively messed something up and I can't fit it in the fridge. It's only us as well. No guests. I'm too tired to care.

I've probably bought a stupid amount of drinks (alcohol and non alcoholic) that will last for weeks. I have eyes bigger than my tummy when it comes to drinks at Xmas. I won't have much booze really but like some fizz and the option for other stuff I wouldn't normally have. Silly really.

Same with chocolates and cheese. That's probably the main cost

Though everything is ludicrous price. Trifle five quid FFS. Anyway, bed for the Grinch 😉Nn all. X

I had a tuna and cheese toastie at lunch. Slightly more worrying, I had some nutty chocolate at home and a couple of normal biscuits and a fondant fancy. I hope it was none of those. I now feel all coldly.

Today was really hard but it's been the 3rd busy day in a row so I completely expected it to be hard. I bet I'm suffering tomorrow but thankfully a lighter day coming.

Morning all. My peace has been shattered with the return of the small human. Normal service has been resumed!

I didn’t sleep well last night. Had stomach pains but only had to get up to the loo once. Have been twice this morning already and still feel there is another trip to go yet. Was due to reduce my steroids from 35mg to 30mg today but haven’t as ulcerative colitis feels very unstable and I’ll take my current 4x a day toilet trips over the 15 previously, especially over Christmas when I want to leave the house!
Awaiting day for next infliximab infusion (due Christmas Day) then I’ll hopefully feel safer reducing the steroids.

In other news, I’ve woken up feeling “good” so going to head out to the shops with the small one as he isn’t impressed with the contents of the low residue fridge 😂😂 and I really want a box of fancy chocolates.

Have a good day everyone x

Well as a nut allergy sufferer myself, my money would be on that. Does seem strange if you haven't been allergic previously though. My fuzzy brain doesn't remember if you are in my club with MEcfs or not? If you are, I believe new allergies can happen.

The other thing to consider is MCAS. That can overlap with some conditions and is under diagnosed.

The last thing is I did once have a reaction to tuna. It was fresh not tinned but it was some sort of food poisoning. I think sometimes happens where it is badly stored and it was very like an allergic reaction.

Anyway... that's my allergy detective bulletin over. Be careful with nuts!

I feel heavy and buzzy this morning. It's a bit pants. Would dearly love to do something today but not sure I'm up to it.

Will definitely need a lie down after the food is delivered 😁 I have never spent so much in my life.

I am also feeling heavy and buzzy @MewithME Slept deeply last night, but now just feel woozy 🥴

Another day in bed I think. Have a quick knitting project to do, but can do that here. Lots of cups of tea too ☕

We're due to go to the supermarket this evening. It's an annual family tradition where we pick up our favourite choccys and booze. As I shouldn't have either I'm thinking of leaving them to it. Will see how I feel later ...

Have a peaceful day all 💕

I’m not in the ME/cfs club, but I’m very much querying the mcas. If we go out in the evening if I have a drink or not I have very weird reactions, flushing / upset tum / cold like symptoms come on almost every time. I’ve never worked out what it is. I was having masses of POTS type symptoms (I’ve not been assessed for that) yesterday and was navigating around the house blind every time I got up.

interestingly I’ve always been the sick person, as a kid I’d get all the illnesses and some really weird ones. I remember having one illness where I got out of bed and couldn’t walk. Another where I ended up with polyarthritic syndrome.. basically if I got too ill my body seemingly attacked itself. But it was the 80s so no one cared. I had chicken pox four times.

As a teen I had a virus at 15 that floored me for 8 weeks and at 16 I had severe glandular fever.

in 2020 I got Covid and really thought I might die, alone in my bedroom sheltering from the rest of the family.

basically, I wouldn’t be surprised if I have some version of long covid among the probable Ehlers danlos and arthritis and everything else.

Woke up in the night with a panic attack, heart racing and took ages to calm down.

Think it might be the whole Christmas pressure etc. Not sure, Said I would get MIL in town today. She is going on about Christmas food etc.

Feeling a bit calmer now.

@FurForksSake I think there's so many overlaps with these kind of illnesses. I have loads of allergies but always got hives with changes in heat and weird things like that. These days I feel sick with strong perfumes.

I have also had chicken pox more than once. We're always told it's not possible. It definitely is. I had it badly age 41!

I grew up being told I was double jointed. It's now called hyper mobility. It's another overlapping thing with MEcfs.

I think a lot of long covid is actually MEcfs. I'm not sure exactly what makes LC different. I thought it was breathing issues and lung damage and I don't have that but covid triggered my MEcfs.