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.

Can you have a snooze in the cinema @MewithME ? I quite like a cinema trip for that reason.

I've had a pal staying for a few days and I've done way more walking than I usually do. So yesterday and today I've been feeling really shaky. Achy chest, slightly weird and out of it. Hard to describe. I sat on the sofa watching tv most of yesterday. Today I've driven ds to the golf driving range and I'm sitting down in the cafe.

I've never had any sort of surgery either @RainSoakedNights I'd be panicking too

You know @FishFlaked , I think you've hit the nail on the head. Yesterday I was sorting some long overdue life admin. I just feel like I want to let everything go. Burnt out from work but "work" never ends because of admin for home and relentless parenting of my autistic child on my own. I know it's the same for everyone, the treadmill of life, but I haven't got the resilience anymore because of my MEcfs (and probably perimenopause as well(.

Anyway, film was great and Scarlet Johansson was brilliant as an action hero. Good for her....she must be getting on a bit and she's still gorgeous and great at what she does. I got nice recliner seats.

I feel very shaky now though. Drive back was quite hard work. In my bed now. TV time for me.

How's everyone else today?

I'm in the bath. Shampooing the carpets really took it out of me despite sitting down while doing it. Didn't get everywhere I wanted done but got a good bit done on top of normal daily cleaning - dishwasher, counters, brush floor.

High fives you are both doing amazingly to get all those things done. Rest rest rest now please.

You’re both motivating me because I am flagging, so thank you. Hanging up the bloody washing gave me a headache earlier because it’s too bright outside and standing about and lifting my arms up sends my heart rate up. I am grimly trying to hang on trying to concentrate on a screen now but not very productively..

Haven't posted on here for a while but been I have been reading all the posts. It will never stop amazing me what we do whilst living with chronic illness.

I am in a bad crash at the moment after a tough week with my dog being unwell. He is 10 and has some worrying symptoms and I thought we were looking at the end of his life but thankfully he is ok at the moment.

Also the general day to day life stuff especially my DD who has bad anxiety which was made worse by the stress of the dog being unwell had been hard. My DS is autistic but he has actually been no problem at all lately which is a blessing.

Everything just feels so heavy and difficult but I am trying to hard to find little moments of joy.

@MewithMEGlad the film was good. Considering going to watch it with the kids but if they won't come I will go on my own. I have watched all the Jurassic Park and world films over the last week. I found them quite comforting to watch especially with the nostalgia of the older ones.

I use the tumble dryer always...feel guilty sometimes but I don't manage hanging washing anymore either. I have had a nap though thanks @FishFlaked 🫡

@Realisation14 sounds hard work but well done. I bet your house smells nice now. Mine is slightly grim as usual 😆🙈

@Tiredandwired2 sorry you've had a rough time. Glad doggo is rallying though. It's so hard when they're poorly. I love the Jurassic films. Ds does too so it's nice to share something. It was really tense though. Definitely 12A and not just a 12! I think distraction is good. I'm going to make tea now and then watch something myself. In fact, I may just do a lot of TV for the next 24 hours. My body needs rest. It's fizzing and twitching 😐

I watched the Thomas Crown Affair again the other night. The nineties one. Such fun. I might have a nineties film festival to myself. I fancy a Few Good Men next.

Quiet day here. Have just cancelled my sports centre membership as I never go so can't really justify the cost. I might try and do some of the Adriene yoga perhaps.

A bet others are also pleased it is a little fresher out, after those heatwaves.

I did the Adrienne ones during lockdown. She's sweet and I love her dog. I have been thinking about trying some gentle yoga again. It helped my breathing a lot. Good idea.

It's nice reading these posts as I don't feel so alone. I always forget I can't do things like everyone else due to multiple health issues but still often try anyway. Today was a very slow start as I'm back on medication for basilar migraines. I then had to rush as my son had a surf lesson. He's autistic and I home ed. So over 3 hours walking about on the beach. It totally drains me. So I've seen to dinner and am about to settle in to at least 2 more episodes of Mr Queen my latest Korean series. In between episodes I will do my skincare routine and LED facemask. Dishes and cleaning will have to wait until tomorrow now , I'm done.

I agree it is nice to hear from others in the same boat, especially when those around. you sometimes don't seem to understand.

I have had some daft comments from family and friends, well meaning but also annoying.

@MewithME well done on the cinema trip, sounds great and hope you can get some much needed downtime during your annual leave and find some little sparks of joy here and there.

@Tiredandwired2 sorry to hear you’ve crashed and I hope your dog is on the mend now. It’s very stressful when older dogs are unwell isn’t it as you immediately worry is this it? We lost a 17.5 year old dog last year and then our 12 year old pooch this year and I remember well the ups and downs and worry of all the various vet visits! A very stressful time.

Well done to all those managing to get jobs done at home. A quiet week here, ignoring the house stuff as off to Scotland on Friday for a week to visit DS so trying to not do too much and conserve energy for the journey.
I’ll likely need to spend a good chunk of time whilst there resting in the air b n b but just looking forward to a change of scene and of course seeing my boy!

Yes I like reading these as no one else gets this illness at all so it’s lovely to be able to converse with people who understand.

I have a v rough few days with a dinner tonight I can’t miss and an important meeting tomorrow. I am only going to work part of Friday and spend the whole of the weekend in bed to recover. I started developing another sore throat today which is a sure sign I’m getting over tired. Physical stuff is always killing for me (far more than mental exertion) but my body is quite good at doing nothing in bed when needed. I have to remind myself that only 2 years ago I was bedridden so this is progress even if it doesn’t feel like it!

Yeah I over did it today. I am going to have to rest better. I think I'm resting but I'm not food it enough.

I'm thinking that maybe it's being on leave that it's harder to recognise if I'm overdoing it and perhaps I'm putting pressure on myself to do some happy things.

Honestly, it's impossible 😭 😂

@ChampagneRose that sounds like an awful lot. Hope you will be ok.

Been desperately trying to sort house out to put on the market. I can’t move being sick and my NJT is giving me so much trouble.

Got some good sleep and felt as good as it gets now. Did a 10 minute bedtime yoga. Link to the one I did here - got ready for bed before do just finished it and fell asleep.

Felt tired today, DS (20) had a girl round so hid in the bedroom!

I am considering weaning off mounjaro but wondering how that will feel. It's quite expensive.

I got an offer on a local gym with a pool for the first few months which is nicer than the sports centre so I might try and do some gentle swimming / yoga as I come off it and see how that goes.

My BMI is 28 so at least not over 30 anymore but not 25 either. I'm not too bothered though. Just want to be kind of healthy ish. (weight)

Well done @Orangesandlemons77 .

I'm resigned to being a fatty. I am not eating much but my body is just a mess and I can't exercise with MEcfs.

I've felt absolutely awful this week. Turns out I've got something going on like a sinus infection. It's very weird. Very painful nose but no cold symptoms or anything. Its a bit swollen and my eye watered a tiny bit. I had similar thing before Easter but at that time my eye was very swollen. Very weird. I wondered if it was mild covid then and then with my post viral weirdness, it seems to come back again. That's how I started with MEcfs.

Been on leave this week and feel like I've done nothing with it. Going to ignore the mountain of chores and rest as much as I can today. Will read a book in the garden if I can this morning and probably lie down on bed this afternoon.

You know, if you say this to people who are well they'll say they're envious and that sounds lovely. It's not so lovely when you are too exhausted to do anything else though. I go away on holiday in a week or so and I am always nervous about not being well enough. I managed the last two years really well, so I'll just have to trust myself it'll be ok. Single parenthood and MEcfs is a stressful combination sometimes.

That was well done on the weight loss btw @Orangesandlemons77 not the hiding though that sounds sensible. Gosh...those days will head my way all too quickly 🙈

@MewithME Reading in the garden sounds great. My therapist has told me that with fatigue-based illnesses we can exhaust ourselves when we feel well enough to do stuff. Maybe because of guilt (definitely in my case). I try to do something for me sometimes now, particularly things that would have once seemed like a waste of time.

Maybe I'll join you reading in the garden today 😃 Anyone else fancy it? I have a few chores to do first but will make time for lunch and a thriller in the garden 🤣

Well done @Orangesandlemons77 I'm also on the jabs, it's not the easy fix I had anticipated!

So sorry to hear about people's struggling with fatigue, but reading about them does make a lot of us feel less alone, so thank you for continuing to post.

Brill. I've got an Agatha Christie on the go again. I just love her. Pure comfort reading. What you reading?

I have so many unread books. And so many undone chores. They will have to wait. I feel really weak today.

@MewithME Marion Todd Lies to Tell. Modern Day detective story but not too gory 😆 Too hot outside now so I've come in to get cool.

I love an Agatha Christie. Just bought A Murder is Announced second hand so will be reading that next.

@MewithME sorry to hear that you're feeling so weak 😭

I've cancelled going out with MIL this pm, she won't be pleased but feeling tired and it is too hot.

Ooh that's a corker. I think the classic miss Marple is on BBC iPlayer just now...I've seen it somewhere. I'm doing And then there were none...then I'm going to watch the BBC version with whathisface who was in Poldark 😁

Your book sounds good. I don't like gore too much either though I did make an exception for the audiobooks of joy Ellis Jackman and wotsit. I'll listen to anything Richard Armitage narrates. Love his voice.

Anyway, my resting has not been too full on. I've been doing a lot of mum taxi 🫣

I have sat down again now in the shade.