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.

Hello! I've had a chilled day sewing. Need some relaxation before a busy week.

Thank you for this🙏

Long Covid crash since last Tuesday. 5 - 6 days. Feel a bit breathless and fatigued. Put on a good show when my daughter visited but now exhausted. Fatigue. A bit fed up. But I'm having a glass of wine and have peeled potatoes for dinner. Frozen cooked mince defrosting.

Thanks for making another thread. Slow resting day here today. About to head on a short dog walk with the kids before coming back to put a film on

Thank you for the new thread. Today mostly spent lying down with a quick walk to get DC some air. Tried picking some urban blackberries with them but standing still with hands moving above my head is literally the worst for POTS. Had to cut it short and get back to lie down again. I really struggle with this boring ill version of myself as a mum. But I know we’re luckier than a lot of people.
Hope you’ve all had a nice weekend.

Thanks for the new thread. looks sunny here today. Have just woken up. Might try going for a swim later if I have the energy. Even if I just sort of float around a bit.

I got some ready made meals delivered so don't need to cook my dinner later, just something for the DC.

Hoping for a good day for everyone.

Thanks for the new thread @MewithME. Hope everyone's doing ok today. Pretty tired and achy after sorting out tip stuff and taking it yesterday. I get hot and very sweaty very quickly, don't know if it's still from humid weather or hormonal or my weight. Am on HRT and in peri.

@Tryonemoretime 👋 Another Long Covidee here.
I've meditated, rested, done a tiny bit of ironing, rested, had lunch, rested, deadheaded a few roses, sat in the garden, helped DH make dinner and ate it and am now resting again.
I'll do a bit of home admin then take myself to bed!

Feel really rubbish today. Very tired and weak for some reason. Drove to chemist and shop then just did laundry and tidied. Sat outside for a bit, but am now showered and lying on bed. Won't do anything else now other than feed the cats.

Were you always on the go before LC kicked in? If so, do you get REALLY frustrated when you can't do what you did?

Yes I was. But I now know that if I don't slow down and recondition my nervous system I'm not going to recover and I'm doing my best not to be frustrated because that doesn't do the nervous system any good at all.

I'm taking part in the Suzy Bolt programme (suzybolt.com - they do 2 weeks free and I have a referral code if you want it too) and that's been very helpful. I think being patient is going to be the biggest recovery aid though.

I can also recommend Jan Rothney's book Breaking Free.

Sending best wishes to you and everyone else with a chronic condition.

Hi all.

Exhausting day at work and another X2 exhausting days on site to go this week. Not sure I can do it. 🙈😭

Lying in bed right now but going to go soak on Epsom salts in a mo become the pain is worse than the need to rest.

Evening all. Not usually awake at this time but only just sat down. It's been a just day.

Really struggling today. Hoping to have a restful day tomorrow. Can feel myself getting slowly worse. I have made a conscious decision to do more and live with a level of fatigue and pain but I'm struggling to find a balance and don't want to be completely crash.

Has anyone tried NMN supplements? Considering trying them but would love to hear of others experiences first

I was at work but having a meeting about a 3rd absence in a 6 months period. This has triggered a performance review and might lead to dismissal. I'm gutted. I'm immune suppressed so more susceptible to things but try my best to drag myself in.
I had one day off with a migraine - could not see let alone teach 6year olds. Had a sickness bug, throwing up for 16 hrs but came back as soon as I could despite feeling awful. And last week ended up taking time off having been on antibiotics pretty much all summer as I had strep throat. My voice went when school went back but I tried to soldier on until the pain was unbearable and I was having to teach through mine.
so disheartening to really try and this performance review is my reward.

@maybejustonemorebiscuit sounds like you need an OH assessment. Does your chronic illness meet criteria for disability? You could do with some support here from union or something. Really sorry. Sounds impossible.

@Tiredandwired2 is it MEcfs you have? I am a bit concerned about your decision to be in pain and fatigued so you can do more. You need to learn to pace ( not an exact science but it's the only answer). I think we all take a hit sometimes then do something special or live a little but if you are daily going beyond your energy envelope then you risk making yourself worse and going from mild to moderate or worse. I'm so sorry. It's very hard,I do know.

I am in pain this morning but I have to go in to work for meetings today.

I have found tumeric supplements and fresh tumeric in my diet along with other anti inflammatory foods help with pain a bit.

@MewithMEI have long Covid, POTs and fibromyalgia.

I'm still trying to pace where I can. I just realised that the level of pacing I was doing wasn't working to keep my life running unfortunately.

It's not forever. I just think I have to do extra work to shrink and declutter my life to make it more sustainable long term.
I have also had a lot of tasks build up due to pacing which now need attention.

@maybejustonemorebiscuitI am so sorry, that sounds very tough but if they are basing that on standard policy and you are disabled under the disability act then they should be considering reasonable adjustments and that includes looking at the policy

Hello, please can I join you? I have psoriatic arthritis and am a full time carer for my two autistic sons. They're 17 and 14 now, so at least I'm not dealing with sleepless nights any more! Emotionally exhausting though. Today I'm sore and fatigued, and can actually rest while DS2 is at his placement where he goes two days a week. I've lined up some crochet and some Netflix, and have company in the form of our two new kittens 😻😻 Cat tax (hopefully) attached!

Thanks for the new thread. This week is proving stressful here, just lots of things keep going wrong or popping up that need dealing with which are making DH stressed. I’m trying to keep things ticking over at home but probably doing more than I should so that’s making me grumpy and a lot less patient with him than I probably should be!

@MewithME sorry the pain is high, I hope you cope with your meetings today.

@YourSpleenIsDamp welcome and what beautiful kittens to keep you company today!

@maybejustonemorebiscuit that sounds so hard. I’m an ex primary teacher too and it’s an incredibly difficult job to do when you’re not in good health. Teachers tend by their very nature to give a lot of themselves and it can feel like a kick in the teeth when you don’t feel supported for something like illness that isn’t your fault.
I think Occupational health is a good shout to see if there’s a way of supporting you to make it work. I’d ask for that if it hasn’t been suggested by school already.

Thanks for the new thread. Name changed at some point during the last one, so here I am, all freshly incognito. I also had a bad night last night, so I am grumpy as fuck today and blaming it all on the pain. Which is only partly true. I'll recover a sense of proportion about the stuff that's adding to the stress in time, but as it's related to one of the DC I don't really have any control over when it might make another appearance.

Spent last week picking up the slack while DH had a nasty cough/cold/fever thing, now he’s better but inevitably I have now caught it and he’s back at work with loads of meetings rescheduled from last week (so either I have to cook dinner or we don’t eat until 7).
Trying to rest enough to get better, but I went into it already drained so don’t have the reserves.
Chronic illness is tedious enough without adding a cold on top.

Hello all - marking place in thread!

@tiredandwired2I’m not sure there’s a supplement I haven’t tried. I don’t know if NMN worked or not. I think NAD may help a little. I am trying CoQ10 and ALA at the moment as there was a study saying daily dosing with these helped but who knows! So hard to tell.

I have WFH today and tomorrow and it makes such a difference. Wish I could do this all the time.

I went online to a really nice support group meeting loosely grouped for my health condition this week. Looking at the screen for that short amount of time then sent me into migraine. Honestly! One step forward one step back. Or maybe two.
But it’s a relief to hear from other people how they manage and how they feel. I’m wishing everyone in this group well. It’s good to be together on here.
Today was very wet so at least I am able to procrastinate going out and getting washing in off the line because that always does me in. So just taking the wins where I can

I'm here but too exhausted to write much.. brutal at work .in pain and want to cry. School stuff and autistic DS also too much.

It's relentless torture. I feel I'm back on the treadmill and no prospect of getting off.

really sorry to hear that MewithME

Walked to the doctors which my hip was not happy about. Struggled up to bus stop to find I had missed the bus by 5 minutes so got some energy back and walked around B&M bought a couple of snacks and a drink.
Practically crawled home and have spent the rest of the day chilling.

Good news is that my kidney function is up to 26. Still crap but no failure