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.

Oh god @ChampagneRose I can see my ds ending up like that if I am not there to remind him. His brushing is awful. I'm going to have to try harder now I think so he keeps better habits when he's independent.

I did sleep ok thanks. Woken up still exhausted of course though. I long for that feeling of waking up with energy. I can't even remember it!

@MewithME I long for a few nights of decent sleep. I'm always tired but can't sleep 🙄

Today I'm went to hydrotherapy despite terrible PEM. I feel the need to keep everything moving. Then called in on a friend who has ME for 15 mins - yes, we set a timer! Was lovely to have a brief catch up.

I think the waking up exhausted is the lack of deep sleep. I don't know how accurate my Fitbit is but it never goes above 1 hour ish deep sleep. I think if I could just extend that I'd feel so much better. Also just wondering where everyone is from? I'm in the UK, north east.

Hey @Stressybetty ...I'm from the north east but live in the Midlands. But I am at my mum's just now visiting so currently in county Durham. 😊

@MewithME ah great, I'm the opposite, born and grew up in the Midlands and living in Newcastle!

Ha .. how funny. 😁

I miss Newcastle. I'm always so exhausted by the journey up yo mum's, I never actually visit Newcastle or Durham when I'm up. I miss both. I grew up near Durham but lived in Newcastle when I first left home and used to go out there a lot. Happy days.

And ..in the spirit of 'what are you up to today ' I will share that it is my birthday today!

I will be attempting to celebrate in a way that doesn't ruin me! I have found birthdays quite difficult in recent years. Not sure how to celebrate them really. Find myself doing the usual things for other people's sake. Wine and socialising....urgh ... exhausting .... such a grumpy old thing. 🙄😁🥳🙈

Hope you all have a good day

@MewithME Happy Birthday 🥳 hope you can celebrate in some way that isn’t too exhausting!

@Stressybetty from the North West originally but lived around the South coast since my mid 20s.

Happy birthday @MewithME! hope you can find some space to rest today.

Thanks @Stressybetty @Hotbeverageplease

I've had a soak in the bath with epsom salts which has helped and having a few mins sat in mum's garden listening to the birds. Bliss. Seeing my best mate later.

Might need a little lie down at some point though!

How is everyone else doing today?

Haaaappy Birthday 🎂 🥳 @MewithME
Hope you get something nice.

I have bad PEM today- obviously did too much yesterday.

Fortunately i am home alone and all I need to do is take in the Tesco delivery. Will put away the cold and the rest can be left for the family to do.

Ah that sounds like a lovely day. Also struggling with PEM today after having visitors yesterday afternoon. It was lovely and I thoroughly enjoyed it as I don't see too many people nowadays but didn’t sleep well ( mind whirring!) so today has been just resting so far. My teen is out for the day so it’s very peaceful and I’m now lying in the garden enjoying the breeze and birds too.

Just woken from a nap. Dozed off for the umpteenth time while listening to the same chapter in my audiobook 😂 😂

@MewithME happy birthday! Hope you’ve had a lovely day

@StressybettyI’m not sure it’s the deep sleep thing. I’ve had an Apple Watch even before I got sick and my deep sleep is sometimes better than it used to be. I think an hour deep sleep is actually pretty good. I’m pretty sure the waking up exhausted is just part of the illness. I’m sure one day they will find this is neurological and something in our brain has stopped working, whatever that is! It’s so frustrating though isn’t it - you kind of feel if you could just have a good night, you might just feel a bit better - just that the good night never comes!!

DH wanted to go out for a fry up so we went with the kids then the park. Then came home so I could get a breather and a cuppa. Then to the tip. Home and out sorting a few gardening bits now. Sat here thinking about what I'm going to do for dinner as my 5 year old gets a sense of accomplishment from cutting a whole cucumber 😁

My DH is noticing how tense I am, I find I have to remind him that my body works on adrenaline most of the time. I also have a significant trauma history which makes it difficult to not exist outside of hypervigilance (there are times I go into hypovigilance and hibernate, sleep for an average 15-20 hours). My internal monologue is brutal, my MIL comes to stay to help, but frankly she just becomes another person to look after. She will often remind me ‘to take it easy’ - I'm always left perplexed - how? With 2 sen kids, and an autistic DH who works a lot, housework/admin, medical app, work - this is just impossible.

My DH does his best, but it feels as though he forgets, I look ok, I do stuff, so I must be ok. When I state my body hurts somewhere, I don't think he gets it, because I know if it was him experiencing it, he'd be in bed so his brain can't compute why I'm up and about.

I have no family of my own, so the book stops at me. I do however hire a cleaner for 4 hours fortnightly and a gardener when the garden gets too much.

@ChampagneRose yes I see what you mean, just I latched onto the recommended amount for adults being 20-25% of deep sleep a night. I've been ill since 2009 and no idea how much I was getting before but the more I have the better I feel I think. Deep sleep is the restorative bit isn't it so kind of made sense that the more the better? I definitely agree there's far more to it though. Like if I drink 2 cans of pepsi max a day I feel rough the following day but following someone not ill on Instagram saying she drinks 4 plus! Same with having too much sugar etc. All ties up with the poster on the anti inflammatory diet.
@Sparklybutold yes agree with the adrenaline tension all the time. I've had anxiety for years and came off my tiny dose of venlafaxine about 6 months ago thinking I would be better without the side effects. I find it impossible to
physically relax, my body is always tense. DH just doesn't get it. On LDN but is not really doing anything.

Morning all. I am in a couple of online MEcfs groups. Lots of people with MEcfs have significant trauma.

I think prolonged stress triggers many illnesses,not just MEcfs. I have friends with diabetes who think it was caused after stress or trauma.

This is reminding me that I should try and meditate more..I was also looking at sound baths too. I had a thread about how to try and heal some of the trauma once. I haven't read it but it's that idea from 'the body keeps the score '.

I got one of those nurosym devices which I think helped with pain and calming down before sleep.

Anyway, not a bad sleep last night at least for me. I do need rest today though. Tinnitus is loud this morning.

Morning all, hope you had a lovely birthday and its not caused any/too much PEM @MewithME

I am the only one awake so I am enjoying the peace and quiet. Going to get ready and get the dog out for a walk before it gets too warm.

I am going to try and take things a bit easier today but as always it's easier said than done. I have paced brilliantly over the last couple of months. Cut lots of things out, tried to pace tasks to prevent flare ups and plan carefully but I have been so utterly miserable. It's impossible without a support system.

My plan today is to cook a simple chicken dinner and I'm going to make an apple and blackberry crumble. Other than that I'm just going to rest. The cooking will take me most the day with pacing.

I have recently felt sad about not travelling so have been watching some walks in different destinations on YouTube. Italy, Spain, Greece. I find it really relaxing so I will do that when resting. I can't handle much more information in my brain so love the scenery and watching people without any commentary.

Hope you all have a good day

Oh and forgot to say I am from south wales

Happy belated birthday @MewithME

I'm from Northern Ireland. Sorry haven't commented in a while. Been having a hard few days.

Sorry to hear you're struggling @Realisation14. Just know that there are people here who understand your struggles. That thought really helps me.

Was so exhausted yesterday- my balance was completely off. Anyone else have balance problems?

I'm aiming for another quiet day today. Might drive the dog to a field and let her run. Or leave it for my son to do 😁

Also not been sleeping well all this week which doesn't help things 😪.

Got a busy week ahead - DD's birthday, various social engagements and a one day sewing course which is something I booked ages ago when I was doing much better. Trouble is, if i don't make an effort to do stuff (and accept likely PEM), then I do nothing for me.

Hope everyone has a good day 😃

Really prioritizing sleep.
taking a short break in the afternoon.

it makes a huge difference. Hoping not to be derailed by insomnia.

@Realisation14 sorry things are tough.

Thanks for the birthday wishes.

I went to bed at 7pm last night which is why I’m up so early but I was absolutely exhausted!

im in London.

@BerfyTigot I do get balance problems when I’m really exhausted but day to day I’m ok, maybe a bit more wobbly than what I was like before but I’m sure my body is super weak as I’m doing no exercise.

I also cannot remember what it feels like not to be exhausted.