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.

I'm out of hospital yesterday so today's going to be spent trying to put my house back together bless my husband he has been managing a full time 12 hour day shifts and basically single parenting for a while so the house has been bombed I know on a lot of threads on MN it'd be LTB for the state of the house but he's done brilliantly so proud of him and then tomorrow I have to be back at work so can't wait for the weekend!

So glad you're out @Stuckinhospital butt you need a new username

And no shade on your DH, it's a lot to juggle plus the stress of worrying about you etc.

I know 😂
To be honest I'm in there that often 😆.
Is there a way of swapping a username mid thread I wonder. Would like to keep on the thread.

I can't clap either due to muscle fatigue. My hands wear out after a very short time. I don't go to places often now but I used to feel very self conscious that I had stopped clapping long before everyone else!

I'm permanently exhausted and mostly housebound. I only go out on a mobility scooter. I try to make the most of my days and do a bit of an online course when I have the energy. I'd wanted to sit outside for a bit but the weather isn't as nice as forecast.

You know, I think community is everything in this illness. I love my Facebook group friends. They are amazing and understanding. We've got a new disability group at work too, which I have been involved in. Very new but so lovely so far.

Let's keep sharing and supporting where we can.

The sun is shining which is nice but also a little tiring. The breeze is lovely though.

I'm WFH today. Had a positive meeting this morning. So doing ok.

Go steady! Housework can be chipped away at. Not everything at once! Glad you're home. Hope it went ok.

Day off work today. I’ve taken the kids to school (drive because tired) been into town to have my toenails painted, met a friend and looked in a couple of shops with her. Done an upper body strength workout and watched TV (I NEVER get to watch my programmes when DP and kids are about).
Now I’m in bed on MN wondering whether I’ve time for a nap before school run at 3pm.
DD has a friend round for tea and DS needs taking to a club so I’ll be on the go later.

I have ME/CFS and Autism, today I had an autism webinar then had banana pancakes for lunch to use up overripe bananas.
Had a nap on my outdoor sofa, in the shade of an awning.

I've pretty much sat and watched law cases on YouTube today whilst I've run the machines 😆

Been a pretty tough day today. Had to take my dog to have a tooth extracted yesterday and its 30 minutes away so I hung around in the nearest town to avoid extra travel (Would have been a 2 hour round trip if I came home and one hour was bad enough).

Sat lots in coffee shops and benches and then picked him up. He had 5 teeth extracted bless him. Then had to take my son who has ASD and LD to his evening club & cook dinner.

I am paying for it today and feel on the edge of a mental breakdown due to pain, weakness and the feeling of existing in 'nothingness'. Doesn't help that my daughter who is home educated also needs a lot of emotional support today. Its so hard to relax when you have children with additional needs.

Sat here in pain (although just took painkillers which are helping) and dreading the evening clubs I have to take my son to this evening. He has two clubs with an hour in between and I just dont think I can drive safely to both so may have to do one. Easier said than done because telling him this can lead to frustration and he can be physically aggressive. Argghh why is nothing ever easy!

I'm watching back to back Law and order while apologising to clients whole I have to cancel meetings/delay schedules (again! 😒) until I feel well enough. But I dud shower and dress, and had coffee in the garden.
Highlight of my day is waiting for a robot vacuum I ordered to arrive as I just don't have the energy to vacuum and the floors are grim.

I've lost the ability to walk far.

Family are trying to arrange a birthday trip out for someone and I am realising how little I can walk. It's really hit me this week. I should be able to build up walking a bit more but it's never going to be great.

Totally overwhelmed by tradesman visit.

@Tiredandwired2 so sorry. It's so hard isn't it?

Good luck for this evening.

Are you able to borrow or obtain a wheelchair?
I bought an electric wheelchair and it has meant I have more scope to join in a long day out, or even just get out in the fresh air on a bad day physically. I know it's a huge cost though.

Had hospital appointment quite early this morning. Just resting totally zonked out on the sofa this afternoon 😴 can't sleep can't get on with stuff I should be doing.

I know we are not exactly winning at life but that sounds a good day to me. ❤️

Banana pancakes! Beats my lunch. I was trying to be healthy. Did some veg with spices then thought might as well make it a curry...put some coconut milk in..... It was OFF! The most disgusting thing. It was tinned as well. No idea how. Was still in date. Yuck 🤮

Had to take a mental health day off work today after an anxiety meltdown kept me awake all night. So not been up to much really. I can imagine what certain AIBU vipers would say if they saw this, but I really couldn’t give a stuff. 😄 sometimes it’s good to be able to post about one’s day and be real.

Bah... MN still has good souls on here despite the bunfighting right wing leaning bonkers AIBU angry mob 😂 @ruethewhirl sounds sensible to me. Mental health is important.

I was a manager for quite a while. I absolutely would have supported someone taking a mental health day. Far better to take a day than keeping going (like I did, because I am an idiot) and then properly fall apart.

Also I was on medication that gave me awful anxiety last year and it was an absolute eye opener to how exhausting anxiety is, I genuinely think it takes such strength to live with anxiety.

My symptoms have been worse today, a combination of the heat and my late night last night I think. So I felt so grateful I could work flexibly at start work at 10. And my speech was bad so I just said I wasn't available for meetings. I don't think it's very reassuring to get legal advice from someone who sounds drunk

I’m in exactly the same position, so I sympathise. My inability to walk hardly any distance crept up very stealthily. When family visited from abroad a few months ago, I was very excited and started planning all the lovely local places I would show them. Then it hit me that I couldn’t manage to go to these places any longer. It’s very hard to come to terms with. I have bought a mobility scooter, but am not able to use it very much. On a couple of recent outings I have used a wheelchair, which works well for me, but I feel so guilty. I can still walk a little bit, so have ‘Imposter syndrome’ feeling that I shouldn’t use a wheelchair and that people will criticise me for it. Ugh!

I should be able to get half a mile regularly with a bit of effort to build up to it. (Distance into town. Sit down in town. Walk home. ) i have done it on a good day recently but they are rare. I need to be able to do that when required not just on a good day. I'd like to be able to walk a couple of miles in a day even if I require sit downs . And not be wiped out for days afterwards. I need to.build up walking tolerance for my holiday. The kids hate it when I can't walk far. I need to be able to walk from the cottage to the beach without looking like I've spent the day drinking because my joints are all slack. Which means doing physio. And going out for walks. I need to start doing laps of the garden.

It takes practice to get over the imposter syndrome!
I can sometimes be well enough to walk a fair distance (a mile or two), ice skate, swim. Other times I can't lift up my head. Both are true for me.

The wheelchair gives me a better quality of life on the bad days. Or enables me to trust we can do a trip to a zoo or a museum or whatever without me ending up too ill to function.

My neighbours are used to seeing me now sometimes walking the dog, sometimes using my chair to take the dog out.

It took me a long time to make peace with the idea though.

I walk whenever I can, the wheelchair is there for when I can't.

But every condition is different of course. I simply can't power on when I have a bad day, my nerves arent getting any signals through to my muscles.

I got a steak pie from the corner shop and had a hot bath. I fiddled around trying to design a cross stitch pattern (failed)