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.

Thanks. I think that's it. I just don't feel good about the future. I just see me getting increasingly isolated. Friends are drifting away. I can't imagine how I can have another relationship. My son will grow up of course and leave. My mum is 80 and I barely get to see her, which makes me really sad and my sibling is no help. They've never even asked how I am since diagnosis 4 years ago.

I see friends heading towards retirement with their husbands, making lovely plans or other friends getting married again. I'm in a worse situation than my widowed mum. People at least check on her. My house is an unfinished mess. I don't know what'll become of me.

I can't remember the last time I saw anyone that wasn't just a work colleague. And I'm sorry because I'm always mindful there are people here dealing with worse than me, but today is a struggle. Can't stop crying.

Just feel like a loser.

Sorry everyone. I shouldn't be posting. This isn't why I started this thread. I don't want to be negative 😔

This is such a good thread idea!

It's been half term this week so naturally overdone it. Coupled with taking the wrong meds midweek and I'm still recovering from it. We go on holiday on Monday so I've spent the day prepping for that. Went and got some cook frozen meals to take away with us which really is a game changer when we've been out all day busy and don't want to go back out to eat at the end of the day.
Kids are neurodiverse so holiday excitement is causing havoc and frankly I just want to be by myself but dh moans that this is his holiday from work and I should be happy... But I don't feel happy.
After kids are in bed we'll watch taskmaster then bed.

Rested up today enough to make dinner from scratch.
chicken with red peppers, cheery (cherry) tomatoes, garlic and coriander, with buttery new potatoes.
It was blooming lovely and made me wish I was well enough to make proper dinner more often.

Sending best wishes @MewithME Give yourself grace. Get good rest. Grasp the small joys.

I hope tomorrow is a better day. If we can do anything to make you feel better just say. Some days are so hard.

You are not a loose. You fight hard.

The rest. Yes. I know the feelings. And yes, I think it's important to post how we feel. Wording and sharing things can make it feel less hard for a moment - and a lot of us have similar experiences.

You are not alone!

Been resting in bed this afternoon listening to podcasts. Feel so tired but think it is age plus the sudden heat 75° here plus the hustle bustle of getting groceries 😐

Hope everyone feels better, tomorrow is another day🌹

So I’ve had a fun few days. 🙈 I joined a local darts team that a few friends of mine are in. DH bought me some lovely new darts so he and I had a little practice with them on Thursday night. I then woke up yesterday wondering what the ache in my arm was and it’s got worse today.

I was also out with the darts team last night and I stupidly wore boots with a little heel on them then we walked around a few pubs and I walked home in them too so my legs are aching as well as my right arm.

Still having issues with back pain but I’m rejoining a back pain Pilates class from this week which I know does help me so fingers crossed.

Today has definitely been difficult. I did my one necessary task which was collecting my foster daughter from her dad's. I put on a load of laundry. Had a long bath. Lots of reading and TV watching and lying down. Feel really rubbish.

Gentle hugs @MewithME it's hard. I'm 18 years into ME/ Fibro/ FND and while I'm in mild to medium now, I have been very severe in the past and have spent 5 years fully bed bound and at one time was unable to tolerate sound, light and had the experience of living in a nursing home for 6 months.

Sometimes all you can do is take it an hour at a time.

I'm sorry you feel this way. I am feeling the same right now. Although I suppose I'm lucky because I have a wonderful husband who does everything for me but he doesn't understand, he can't because he hasn't experienced it for himself. He can help, he can be my shoulder to cry on, to lean on but the only people that really get it is others with lived experience.

I worry sometimes he or family probably think it's put on or exaggerated because they couldn't possibly understand which obviously doesn't help with feeling low. I doubt the think that but I tell myself they do.

I'm 30's. I didn't expect my life to be like this. I had plans. And for all of my 20's and now probably the rest of my life I've had nothing but pain, misery and all the symptoms in the world it feels like. I have no life - I've never been one to go out and socialise but I'd like the choice, you know? There's so much I wanted to do with my life, so much I wanted to be and I grieve that life everyday.

I also feel completely shit that my husband has to deal with this. I'm sure he didn't expect his life to be looking after his wife to the extent he does. Sure "in sickness and in health" but it makes me so guilty that he's in this. That he doesn't get to have a normal life.

Sorry, didn't mean to highjack but I'm with you. I'm sorry.

And just because someone objectively has it worse, doesn't negate your experience, feelings and emotions. There will always be someone worse off but that doesn't matter to how you feel.

Our feelings are valid. Our feelings are real.

You are not a loser. And it's fine to cry. (After 4 years of LC, I cried all over my husband because I was so tired and thought things would never get better). It sounds as if you are having it far worse than I ever did. I'm so sorry. Is there anyone who you can lean on - someone who can make you a cuppa and be a sounding board? Any old friends who you could phone and make contact with again? It sounds nutty, but i found details of 2 old friends from our college days and we're now in contact again. Virtual hugs for you, and God bless you. 😊

We skip church today. Daughter sings in the choir so have to leave at 8am for rehersals. Never up to it but not at all today. We skip very few Sundays.

I intend to stay in bed. Try to sleep and get some rest. Have to pick up cats at 2pm.

We're going on a day out to a local seaside town. We haven't been out for so long, the kids are growing up and I'm not doing anything with them apart from watch from a distance sitting in a chair.

So we're going out today and I can sleep all week when they're at school.

I'm so sick of myself. Im not sure long covid is even a thing any more. I had a virus 3 years ago and I'm still sick? Or am I just a lazy waste of space?

None of you struggling are lazy. You really aren't, something isn't working right in your body that's all. In fact far from being lazy I bet you have to be more tenacious than a healthy person most days.

I was struggling yesterday, I think it was the heat. I took the dog for a walk in my electric wheelchair and then he decided to go to the toilet at the far side of a field so I had to walk to get it. Which not only made me feel ill but for some reason made me feel embarrassed, like people will think I am a fraud for needing the chair! But the walk (mainly in the chair) made me so weak I had to lie down for hours afterwards. It was so good to get outside though, my mental health has improved a lot since getting it

I have seen this comment from power chair and wheelchair users a lot lately. Isn't it a dreadful thing in our society that we're not using the brilliant things that can help us or else carry shame because of judgement from others who are ignorant? I honestly think those benefit cheat TV shows and newspaper articles from years ago have a lot to answer for.

We need to get away from thinking that disabled= visible signs and that we have any right to comment.

Keep using it Cassandra!

I never thought I could have a dog again but maybe I will if I can do something like that. It's not right for me now but maybe.

Thank you for the kind comments yesterday. I've woken a bit brighter this morning.

My lovely lad is home and he helps (though we did have an autistic wobble to deal with too yesterday evening).

I think perimenopause is why I sink with my feelings at the moment. Mostly I can be alone and cope but the loneliness and coping alone in life has felt quite unbearable at times lately. It's quite frightening to be alone with MEcfs and have the responsibility of carrying on working to pay the mortgage and look after my son.

So... back to the spirit of the thread, so far today I've had a coffee and pain au chocolate. I'm back in bed resting a bit more with MN. I will try some fresh air later somehow. I need to do something for my mental health even if my body has reservations!

I completely get it as I use a mobility scooter. I often get comments like "that's cheating" and "I wish I had one." If only they knew what I'd give to walk my dog normally!

People judge what they don't understand sadly.

My conditions are fairly “light” is the only word I can think of right now but I’m 9 days post op for stage 4 deep infiltrating endometriosis (also immunocompromised)
I am desperate to hoover(!) so I’m going to try and do 1 room and see how I feel

I feel exhausted and migrainey today but I met a relative at Costas yesterday for an hour and it only takes that to put me under for about 3 days. I was only just feeling OK from lunch with a friend on Wednesday. It's rubbish it really is.

I want to see a specialist about the mcas side of things because I feel like I have a heavy fluey cold for several days around twice a month and it's messing with my mental health. Can't eat much it all triggers histamine.

We got the dog just before I got a bout of Covid that made my symptoms much worse (3 years ago but I am still recovering).

He's a big bouncy springer spaniel so I couldn't give him everything he needs. But DH does the morning walk and the children help too and we pay a walker to come a couple of times a week.

I think knowing I am never going to be fully well, then next time would get a smaller dog who only needed short walks

But I do love taking him out because I end up chatting to different people and it's much nicer than just being housebound

My activity today was to go and see the new Peppa Pig at the cinema . My children are all tweens/teens but they all wanted to go, so did DH! I think it was a bit of nostalgia really for us all but it was also a lot of fun as the children got all the "jokes for the parents" .

That's v sweet.

Hi @User57713
So sorry you have Long Covid. But there is hope. I caught Covid for the first time in January 2021 and Long Covid hit about 2 weeks later. Until the beginning of this year, I spent more time in bed or on the sofa than I can bear to remember. Since my husband retired, we did lots of city breaks for art galleries etc. Had to give all that up. Eventually was well enough to go on what was supposed to be a relaxing holiday abroad and needed a wheelchair at the airport on the way back. Beginning of this year, LC was improving but with regular debilitating crashes. Literally couldn't pick up a fork at dinner time type crashes. Just got back from another relaxing break and.....NO CRASH! God willing, you will improve before long. It's a long, hard, slog! Are you part of a Long Covid support group? My Dr referred me to one and it was such a blessing to me.