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.

Yet another rubbish night's sleep, work in office then took MIL for blood tests, home, more work. Just changed MIL wet bed for millionth time and put more washing on. Planning to pack her off to bed early and have an early night too.

Exciting day...I got new remote control blinds fitted! They're fantastic. But as always, I'm 🫩 by having someone doing work in the house. I don't know what it is. The combination of going up and down stairs more (home office upstairs). Tidying up. Making tea. Chatting. Standing while talking to bloke. I'm absolutely done in.

They're lovely though. Will be great if we ever have some sunshine this summer! Downstairs gets boiling!

Random emoji there. Stupid phone doing autocorrect to flipping emojis. Exhausted was the word I was going for.

The blinds sound great. I know what you mean by people exhaustion!

I’m meant to be in the office today but I’m too tired. Dp keeps waking up at 4am and waking me up and 3 days of that in a row and I can’t get out of bed. I’m also hugely pre menstrual because my period is due today or tomorrow which isn’t helping (I’m 52, I wish they would just stop fgs!). Trying to decide what to say to boss sigh.

Tell the boss you're struggling with menopause related symptoms! They should have a policy these days. .. but I'm feeling stroppy just now....that'll be because I'm fifty and in same boat 😁

I have a raging ear infection. Currently caller number 30 in the doctors queue!

That's great to hear. Do you have the cleaner in when you at home? I don't work so I am mostly at home but worried about the awkwardness of it and wonder if that will cancel out the benefit.

I am hoping to go back to work in a year or so after giving myself a good amount of time to 'recover' or most likely stabilise and I think having a cleaner I get to know and trust before that time could be a good idea.

I’m always in for the cleaner, she starts in the kitchen then does upstairs while I stay in the living room downstairs. When she goes back to the kitchen I go upstairs to the nice clean bedroom until she’s finished. It’s not awkward at all and I’m never in her way.

I have a cleaner and tend to hide away in one room (with the dog) and then move into another when she's ready for that last room.

She's lovely and it doesn't feel awkward (though my husband does feel awkward when he's home).

She has been such a lifesaver as i struggled on without any help for far too long, with the house getting worse and worse.

The worst bit is tidying up for her!

That's fab! Thank you. You have been convienced to invest in a cleaner. Now I need to find the right one. Will be lovely to spend less time cleaning

@BerfyTigot the tidying up is what puts me off. I feel like my house isn't even decorated so feel a bit embarrassed. Plus I hate having anyone in my space. It wears me out.

Today's has been so hot. I'm really struggling tonight.

When I advertised for a cleaner I explained that I had a health condition that meant I would mainly be at home

I also advertised for home help /cleaner so they do things like laundry /tidying too.

It makes me feel less guilty about how much DH does and means the bits he would never notice (like cleaning the bathroom) are done regularly

Is it Thursday? We're on the home straight again to the weekend for those that are battling work.

Hope everyone is doing ok.

@Idontknowhatnametochoose did you get some antibiotics? Hope you feel a bit better very soon.

And I lost track who it was, but the person who had their pain meds on their way, hope it's more manageable now.

I have parent's evening tonight. It always exhausts me greatly. I will try and nap at lunchtime. 😩

Yes nearly the weekend! 👏 I’m not working but do have a teen so still enjoy the weekend when we can switch off the morning alarm!

Good luck with parents evening, they really are exhausting aren’t they? Especially secondary school when there are so many teachers to see. I’ve not always been well enough to attend but last year it was GCSEs so I pushed myself to go, rested a full day just to make it, only to find I had to miss maths/ science as the classrooms were up 2 flights of stairs and no lift! My mobility isn’t up to that so DH had to go to those 2 This year I’m delighted as it’s back to virtual appointments so much more ME friendly!

My sleep isnt great this week so had a couple of naps in the day but then can’t sleep at night so I’m trying to rest but not sleep today. Listening to an audio book and doing a bit of Duolingo to keep me occupied. What activities do others do that aren’t too exhausting but keep the boredom of being stuck in the house at bay?

Thanks @Hotbeverageplease

I rang school to check if it was all in the one building like last year which was better and if there's a lift. My knee is terrible and I don't think I can manage stairs at all.

I'm going to take my own stool as there are never seats for waiting. And my earbuds.

I have to go because I'm a lone parent. Exh hasn't been to any in 14 years.

Though the thought of having to attend with him turns my stomach so I'd rather do it than him.

I'm an audiobook person too. I don't really do anytime outside of work if I'm at home. Chores when I can or must. Audiobooks , gaming if I'm up to it or TV. That's about it.

Do you like theatre? National Theatre at home makes a nice change.

I do like theatre so I’ll look that up, thanks for the suggestion 🙏 Always good to switch it up a bit. I like to sit/ potter around the garden ( I know I sound in my 80s not 50s 😊) most days but it’s tipping it down just now!
Great plan to take a stool and earbuds and that was sensible to check it was all in one place. Hope it all goes smoothly and you can get home quickly.

Filling out pip renewl form. I hate it so much 😢

I've watched quite a few so let me know if you want any recommendations 😊

Weirdly I find it a lot less demanding than TV or films. It's the lack of edits and camera cuts. It's more relaxing. I love it.

I'm sorry. I've never done it but I hear the horror stories.

It's horrific the level of stress it causes as you know their just going to lie about whatever you write

I've got a heavy cold, it's hit me really hard. I also found out yesterday that a wonderful friend I met through this bastard illness has just died. So I'm feeling very sorry for myself.

I ventured downstairs earlier and had a toasted bagel with avocado and a cup of coffee, put a wash on and cleared/wiped down the kitchen sides; other than that I've been in bed messaging my best friend and anxiously awaiting the outcome of her job interview (which she should be in right now), catching up on MN and FB and listening to my audiobook. DH does most of the school runs anyway. I'll cook a simple dinner later and then we'll all snuggle together and watch the next episode of Wednesday. I watched it when it came out with DS (now 12) but this is DH and DD(9)'s first time watching it.

I love the Elevate brain training app. I extended the free trial and then when the option was to either pay or cancel I chose cancel, and selected the cost as the reason and they offered me a half price subscription. I think I paid £20 for the year, a couple of months ago now, and have done 15-20 minutes a day ever since, so it's well worth it.

I also enjoy Words with Friends (online Scrabble) and do a few daily online word games (Wordle, Connections, Alpha guess, Take Five).

I do a basic home workout every morning that I feel up to it (so not this week!) and cooking when I've got energy too. I usually manage to get out with the dog (again, not this week). When I'm stuck in I enjoy Lego, reading, audio books... I'm a massive music geek and try to listen to at least one full album each day and I loved the British Scandal podcast series.

I've also just joined a Zoom book club. Mine is run through a charity specifically for my illness (I've got secondary breast cancer) but I'm sure there are others.

I'm sorry to hear about your friend

Yep on a course of antibiotic tablets. I can't tolerate penicillin so always get different ones.

I'm out for the day with aunt and family. Just had a quiet lunch. It will knock me back some days but been nice despite ear itching and painful.

Oh some great ideas thanks, will look at the Elevate brain training as I quite like Wordle/ connections too. I do read quite a bit and like the idea of an online book club so maybe I’ll look into that.
Lost my little old dog a few months ago so still feeling a bit lost without her to keep me company!