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.

It can be really hard to convey how crushing fatigue feels to someone who doesn't experience it, can't it? My DH is similar, I have to admit he is very supportive most of the time, but he doesn't suffer from fatigue himself and there are times when he says why don't I 'just' do x/y/z and I'm reminded he can't relate to the depth of the exhaustion I feel at times. He's also very big on logic so it can bug him as to 'why' I can have an exhausted day straight on top of a good night's sleep, or vice versa - it's really hard to get him to accept it just is and there's no 'why'. 😄But I have to be fair and say he's great about it most of the time.

Hope the fatigue clinic helps!

I am dragging myself through the day and in fact have been dragging myself through the week. I think I have caught something, but I don't know what, it's not covid, not as bad as flu, bit worse than a cold... just bleh, if you get the idea. I'm just about functional, but just not right IYKWIM, and barely a scrap of energy. I've just hopped on here in my work break but struggling to be super productive today tbh. It's been a stressful week as well which doesn't help. Weekend can't come soon enough for me this week! 😄

Urgh today has been a day people. You all know what I mean!

Dragging yourself around is a very good description of how I feel.
Covid is doing the rounds and some socialising I had agreed to have been cancelled.
I'm delighted, lazy weekend here i come🙏

It can be really hard to convey how crushing fatigue feels to someone who doesn't experience it, can't it?

I had a 3 hour sleep this afternoon. I only meant to sit down for half an hour. I'm so fed up with myself.

I hope everyone else is a bit cheerier than me.

Tomorrow I'm going to a community garden where I volunteer when I feel like it or I sit around in the fresh air when I don't.

Sorry, I only ever seem to post here when I'm feeling sorry for myself and don't ever have anything useful to offer

I’ve just spent 13 days in a hospital bed I’ll and don’t have any bloody energy so today I’ve had a little bath, had a 3 hour nap and done an Asda food shop to be delivered tomorrow . That’s enough for me and I’m knackered again.

That sounds like you've had a rough time. I can't imagine how poorly it would make me to be in hospital. It's quite scary actually.

@User57713 that's ok to vent. Happy to listen. That's why we're here really. The ups and downs. Trick is finding our ups!

The garden sounds lovely. Hope you get some sunshine.

@Orangesandlemons77 I go round in circles about hrt. Sometimes I think I'll try it again. And then I get scared off because it pushed my BP sky high last time and I feel like I'm scared to rock the boat with anything especially when work is an to kick off busy busy for a while.

I was thinking yes this morning though.

Also @Orangesandlemons77 I think the holiday thing is hard to explain. I find it hard to work out. We probably talked about this up thread but my memory is awful so sorry if I'm repeating myself....

I think maybe holidays have just the holiday to spend energy on. Less stress, more naps with zero pressure, and maybe a bit of adrenaline from the buzz of being somewhere else. I feel grateful that I've managed a holiday. It wasn't easy....as I moaned a lot on here but I am glad we did it.

I'm glad we got away on holiday too, it was good to have a change of scene and people cooking the food etc, which is always a worry to me and source of stress and fatigue (need to get them to help more really)

It can all take a toll though the travelling etc, spending lots of time with others, the heat etc, feel bad for moaning but it is taking a while to get over. Plus the feeling that others don't get it and just think you are being lazy...

Anyway DS is back at school and settled into the sixth form which is good, a bit more structure and routine. Hoping for a good weekend for everyone x

I also tried HRT for a year but it didn’t do anything. I’m 52 and also still have periods for my sins.

I had a really rough week and I’ve paid for it today. I could barely get out of bed and I’m actually in bed now for the night even though it’s only 6pm. I just know I can’t be anything more than horizontal - I have that feeling where my limbs feel like lead :(. I’m guessing it’s PEM from going back to work.

I also think it’s good to have a change of scene and I also think it’s adrenaline that carries you through. If you ever get a chance, there’s a film on ME called Unrest (it may be on Netflix, not sure) - but I found it quite good at explaining the condition to others.

Today I'm on the sofa. PEM 😪 Had a massage on Thurs am and suffering now.
Hope everyone has a good day 🤞

In bed drinking coffee. Put my husband out of the bed, to the spare room as I wanted the space.
Took a sleeping pill and got some sleep.
He has kindly brought me coffee.
Doing nothing for the day.

I heard from someone that caffeine patches really helped her sisters long covid symptoms.
Might be worth trying.

I'd love a patch for my cranky bitch symptoms.
I don't even know why I'm cranky, but I just am.
I want to tell everyone to feck off and leave me alone.😁
My upper body is so sore and achy.
I want to return to playing tennis but that seems very far away. Think that's where my bitch attitude is coming from.

@Greenvases I think "cranky bitch" is just where you get to when oestrogen drops if you are around my age. Personally I quite like it. A lifetime of people pleasing is finally being washed away to reveal my beautiful aged self with all my wisdom and lack of patience for utter BS 😁

I think I would be very wary of caffeine patches. Certainly with MEcfs I drink coffee but in moderation. If it pushes my HR up, it will add to PEM if I'm not careful.

Besides caffeine without the coffee is not a sell for me 😏

@BerfyTigot I've not had a massage since I got ill. I asked about it with other people with MEcfs and lots said same as you. Causes a crash or pem.

I woke early thanks to ds and then dozed on and off until 9ish. I have had coffee and a bath and now having a rest mid way through changing my sheets.

In a fit of optimism..I suggested a pub lunch with DS so will have to get a move on. I'm hungry now. Not sure it's wise. I am tired still but we will go somewhere near.

@ChampagneRose I couldn't bring myself to watch unrest and then forgot about it.

It's a balance isn't it? Sometimes talking about it is great... especially with you lovely people who understand....but then sometimes I get sick of feeling defined by it. I think that's why, despite my difficulties with it and annoyances, work is actually good if I can keep going. It is distraction and I can be another 'me'.

@MewithME enjoy your lunch out!😋😋

Oh I have definitely morphed into a low tolerance peri 15 years ago.
This is something else, its definitely pain related.

Enjoy your lunch.

Well then, that is understandable @Greenvases . Coping with pain is enough to make the best of us cranky.

Update on lunch....DS had an autistic strop because I asked him to pick up a cushion then said he doesn't want to go now. Sigh.

I am tempted to go out and leave him to it.

I am also cranky!

Sorry... didn't mean to quote and @ in the same post. Brain is not working well today.

It sounds a really tricky situation having your own illness to deal with plus an autistic teen MEwithme, I feel for you. Maybe taking some time out for yourself might be for the best, if you can.

On that subject, I have rejoined the gym which has a pool with a temporary membership (as probably won't use it much)

Even if I don't do anything but float around a bit it will be a change of scene and some me time, now school is back on

I can't really afford it but with the mounjaro increases I guess I'll be coming off that and can use that. Perhaps. I will see how it goes.

I also got a letter saying I am having CBT for PTSD, video calls weekly for a few weeks. I have had this before so unsure why they are doing it again. I guess I will go along with it as they have suggested it, but not expecting much.

Spent all morning in bed but MIL is coming round soon for me to take her out.

Pain and challenging children is a very difficult combo.
I am trying to manage my stress but ond of my children is the source of my stress and undoubtedly this autoimmune disease.
25 years of navigating a difficult child has ground me down.

This stress has really focused me though for the first time.
I have to drop the rope.

I'm actually being relatively productive today, given how rough I've felt all week. Done some tidying, got my mum up/dressed/breakfasted (I'm one of her carers), and now cracking on with some admin. Oh, except that I'm in (clean) PJs, and now I've tidied and got my mum up, I'm back in bed doing the admin. It's been that kind of week. 😖😄

Flare up here for me today but it's my own fault for eating sugar.

It's been a busy week with the kids getting back to school/learning. My autistic DS started college this week and has struggled with the change so is a bit on edge. We got though it and managed but my stress levels were high. We have had a good year but previous to this we had 15 years of physically challenging behaviour that got harder to manage as he got older. On one occasion he gave me concussion! So although it didn't get to that this week I did fear it could. It made me realise how hard the last 5 years had been.

I also had to get my daughter into GCSE learning. She is home educated and it's been a lot to get my head around.

Then the boiler gave up on me later in the week and needed fixing. I hate arranging tradesmen and my finances are getting stretched to the limit.

I do enjoy being single but I now and again I wish I had someone to help share the load.

Kids are with their dad today so I am sat watching Vera after a dog walk and prepping lunch and dinner. I know I have probably pushed myself into further pain but there you go. Hoping to have a nice walk with the kids tomorrow and then a nice film evening and dinner prepped today will help that.

Flipping heck @Tiredandwired2 you're flipping awesome managing all that! Hope your day settles in and you and your daughter get to grips with GCSE curriculum ok. My ds has just started his GCSE curriculum too. He seems happy so far. 🤞🏻

He calmed down and then wanted to go out after all so we've had a nice lunch together. Actually mine wasn't that nice but I enjoyed being with him and out in the world for an hour.

Although people run my town down a bit, it's so handy for everything. I always say if I was going to get ME anywhere, this is the best place. I've got pubs, shops, doctors, dentist, school...all 5-10 mins drive away... Plus some nice countryside places. I pick the walls with benches now and luckily I have a few choices.