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

[MewithME]

I do like the What are you doing today thread. But as someone with an energy limiting illness, I find myself marvelling at the level of activity that is beyond me.

Sometimes I feel sad about it even after accepting my illness for a few years now.

My week at work has been brutal and I'm feeling very weak and worn down. I am trying to find some inner peace.

This morning I managed a bath and ds helped when shopping arrived. I sat in the garden for a little while but newish neighbours were playing loud music which I found a bit stressful.

I've managed to put a wash on and made some lunch for us. I'm now in bed listening to some music festival in town floating on the breeze. There's sirens going off, so hope nothing bad has happened to anyone.

I'm going to lie down for a couple of hours. Hoping to watch a film with DS later. Pizza for dinner.

I found a nice new podcast called Shedunnit with lots of Agatha Christie in it which is up my street.

I may just lay here and listen to that for a while.

So if you have ME or LC or fibro or anything else that is a flipping funsucker of a thing to deal with, do share your little things. Our world is smaller but we are here.

I will add I know there are those worse off than I am, but not matter what we deal with, chronic illness is hard and it's hard to feel part of the world.

@JaaamesBaaaxterrr that must've come as such a shock. But on the plus side at least you know what you're dealing with and that there's treatment that should help. I hope you're feeling up to going to the school later.

@Idontknowhatnametochoose glad you seem to be on the mend, albeit slowly. Can you manage a smoothie or something? I often do homemade smoothie ice lollies this time of year, could that be an option?

What's everyone doing today? We're at a gig tonight (super busy week for me) so I need to save my energy for that. I'm just doing short bursts of housework in between lying down under the fan with my book.

What a brilliant idea for a thread - THANKS, OP!!!

I have had mobility difficulties for 20 years. During that time I was solo parenting 2 children both of whom have Autism. So, physical issues plus exhaustion. I learned to count out my teaspoons of energy.
My Dd has Hypermobility so at 17, she has to do the same.
My Ds went into post Covid (we think?) Heart Failure last summer (he is out of HF but still has Cardiac scarring and inflammation). He now has POTS too.

Sometimes, getting out of bed, washed & dressed & eating healthily is hard.
I find it hardest to watch my young people struggling, when their contemporaries are playing sports, interrailling etc. It is what it is. I'm glad I've found this thread.

Currently at work, but short day finish at 1pm but have been up since 5am. Will see what daughter wants for lunch then sit/Potter in garden until I have to start dinner. Hoping to be back in bed for 9pm

Just another full on work day here. Feeling pretty stressed about work just now and this should be my less stressful period.

All I do is work and parent. Absolutely exhausted and sick of not having much joy in life.

Desperately want to try and see my mum soon. Still so pissed off with my selfish and horrible ex for doing the "parenting is optional" bullshit on me yet again. After a decade on my own, you'd think I'd be used to it.

Apart from that, happy ds is happy and looking forward to summer 🌞

Sorry that things are so tough and hope that you get a break soon, MewithME.

I managed to go on a cinema trip this week. Haven’t been since before Covid. Lots of planning, made it happen, then realised that watching the screen sets off the migraines that I now get. Had to go straight home and lie down. So for anyone else who can still visit a big screen.. the Ballad of Wallis Island is excellent, as far as I got through it

@JaaamesBaaaxterrrwhat a shock that must have been! I suppose in a way it must be a relief to get a reason for the symptoms but still very scary

@MewithMEthat’s how I feel too. I work and I rest and I just about keep up with my kids. I have v few fun things as I just don’t have the energy for it. It’s one thing I didn’t realise before I got ‘ill’ for want of a better word. I just don’t think I would have expected my quality of life to be this badly affected. It’s like you have to keep on with the shit bits and sacrifice the rest. I think on that Maslow hierarchy of needs or whatever it was - you slide right down the scale with ongoing illness

@pinkingshearssorry to hear your story and about your kids. Heart problems were so prevalent around Covid weren’t they. It’s horrendous what this illness did to people

Thanks for nice comments. I feel bad moaning. Nothing is particularly worse than it usually is. I think I am just a bit frustrated at things not being better than they are. And I am flipping exhausted. And I have to work this weekend.

I try hard to find pleasure in smaller things and I am grateful for my son's happiness just now. He brings me joy..he's a sweet lad.

I bought a.nice.plant at the weekend and spent a few minutes watching the bees enjoy it this evening. I hoped I'd get more bees and they came. 🐝😊

I’ve been having the worst stomach pain for a few days. I thought it was just period pain but still had it yesterday and my period had stopped. Thankfully it seems to have stopped today but it now feels like I’ve pulled muscles around my stomach. The only thing I can think of is that I had a sour apple martini a few days ago and it was ridiculously horribly sour and I’m wondering if that caused the pain.

I’ve been to my back pain Pilates class today and after just 3 weeks I can already see a very slight difference in my mobility in class so hopefully that continues.

I’m now sitting in Spoons with an alcohol free beer waiting on a friend.

I have got a cold. No fun. Makes everything even more bad.
I have done 3 shifts 8 hrs so no more work this week. But I tired. Really really tired.

Yeah, it was a big shock, but also a relief to know what's going on and that there's reasonably successful treatment to keep me mobile.

I felt fine after the treatment on Monday fortunately, so I was able to go to the leaver's evening at school. It feels strange that the last time I saw some of the other parents I was in a wheelchair, but now I'm walking fine. I feel like they might think I'm a fraud! It's hard to understand the ups and downs when you haven't experienced it yourself.

My other son's school leaver's evening is tonight, then we're done for the summer!

Anyone else struggling with sleep lately? I'm in Scotland so we have barely any darkness and I keep waking up at 5am and struggling to get back to sleep. I can only think it's the fact the sun comes up at 4am so it's incredibly bright by 5am that's confusing my body. But I'd love move than 5h of sleep please!!

Dark curtains. I love them but still struggles with sleep.

With you on the interrupted sleep (and the bright light all the time with migraines is painful). Wishing everyone a good day today.

We’re in Scotland too. We’ve got black out blinds in our room and it’s been a godsend for us. DH works night shift so we had to do something so he could sleep during the day. We ended up getting blackout curtains for both DC’s rooms too as the sun beams right into their rooms first thing and it’s helped them a lot as well.

My current sleep issues now are just pain and heat related. 🙈

We have blackout blinds, but the light comes through the sides as we have to attach it to the outside of the window cavity. Nightmare!!!

@SloppyThePoodleOh no! Would blackout curtains help with the gaps or even tape or something?

I have blackout blinds and curtains. In summer it keeps the light out better than either alone, and in the winter it keeps heat in better.
Today I’m mostly relaxing under my awning and snacking on the strawberries I planted just above my outdoor sofa:

I’ve started sleeping with an eye mask. My whole life I refused to entertain one as I thought I would find it too intrusive but since I’ve been ill, my sleep has become so important I’ve had to get used to it. It’s soft and blocks out all the light and I would highly recommend. No more worrying about light creeping through the blackouts. Dp is the one who wakes me up - I find it so frustrating as otherwise I would sleep a lot longer!

@JaaamesBaaaxterrrglad you felt ok after the treatment

I’ve just ordered another supplement to try. I hate to think how many supplements I’ve tried over the last few years!

@MewithME sorry things are tough just now. I can totally understand how life is just work, recover, work and no time for the fun things. I totally take my hat off to all of you struggling with balancing jobs and chronic illness.
I’m not in the same boat as despite trying everything I simply didn’t recover enough to go back to work. Trying not to be outing but it was a job you need a lot of energy for and with severe ME I just had to eventually accept I simply wasn’t well enough to return. Not easy but a long time has passed now.

Yet even without work I find all my energy just goes on the basics each day and the things I have to do so fun is also missing. Plus anything fun causes severe PEM so it’s just a constant balancing act of if I go here, I won’t be able do this ect… Like Groundhog Day sometimes!

Like you, I’ve definitely learned to appreciate the little things where and when I can and yes it helps a bit but I hear you, it’s just tough some times and good to offload to others who truly get it!

This is the eye mask that works best I’ve found. It’s v soft (I can’t deal with hard materials on my face) and has a V bit where the nose is to block out light. https://amzn.eu/d/giQ7RS4

I’m feeling physically very tired at the moment though mentally not too bad. Hoping to fit in an afternoon nap today!

@MewithME sorry to hear that your life is so hard- you give such good advice on here. Kudos to you for still working.

I am still resigning myself to not working again. I'm early 50's so still felt I had 15 or so years of work left in me. But the reality is that I can't.

@Hotbeverageplease I agree, I also find all my energy is used on daily living. And I've just popped on here to recommend xl body wipes from amazon. Sounds minging in this heat but I don't have enough energy for a daily shower, but i feel quite fresh using a couple of these every other day. Not great, but needs must.

I can relate to fun activities causing PEM too - a couple of days ago a friend called in for coffee and stayed over 2 hours. I find it hard to explain to people that 30 mins is my limit. But then I wouldn't have understood before I got ill.

Hope everyone has a good Saturday. Today i am dressed after having a wipe wash. I'm with my dad today and some other family members are coming for lunch. I'm not doing anything fancy, just bought some things in.

Will definitely be having a nap this afternoon 🤞🤞

@MewithME you've shown me the other side of working. I'm another who isn't able to, and I feel very depressed because I wish I could. But I understand it's not a walk in the park with chronic illness. I'm worried about the benefit cuts because I'm single and have little support. I spent years and the rest of my health caring for my profoundly disabled dc. I want to earn my own money but I don't see what I could do. I realise that having a job won't necessarily improve things but add a whole other stress to it..

Hello @BerfyTigot and @Idontknowhatnametochoose

Hope everyone has coped with the muggy heat today again. Cooler tomorrow thank goodness.

I don't think it's easy working with chronic illness and I don't think it's easy not being able to work with chronic illness. It just sucks.

I am working tomorrow but was at home today. Actually felt more on top of things than I have. Managed to change my sheets. Online shop came. Ds got a haircut. Wonderful mobile hairdresser who is great with autistic kids.

I'm a bit worried about leaving DS alone tomorrow while I work but he's almost 14. He should be ok. He has my friend's number and I will make him a sandwich before I go.

It's more that it is crap because he'll be alone. Plus when I get back, i will be shattered but I'll have to spend time with him. Plus make dinner.

Hope he'll be ok. Single parenting sucks too. Ha...I'm moaning again 🙈

But largely, I've felt ok today. Not unhappy. Fairly content in the scheme of things.

For me most of today was spent in bed. I have a cold and have had a really rough week so I feel very down. Also had a flare of my anxiety today too.