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.

Hello everyone. I've not been on much the last few days so I'm catching up with this thread now.

I had a big event at work which is always exhausting. I have mixed feelings about it. I love it and I like seeing people and being part of something. I also know it's way beyond what my body can do. So I'll be taking it easy today. The event was Thursday so if the PEM is going to kick in, it'll be today. Yesterday I took it as easy as I could. And I've slept really late which is unusual.

Oh and my body decided I'm not done with periods yet. Bloody six months since the last one and it started on my event day! Bloody menopause 🙈

So I'm having a slow start. Got some frozen pastries in the oven. I will watch a film with DS later and ring my Mum. That's about the extent of my plans. 😴

Oh and I started a new audiobook which I keep falling asleep too. I'll have to try and listen when I am actually awake and see if I can grasp what's going on. Not sure if I like it yet. It's Bob Mortimer s Hotel avocado. Didn't realise it was a sequel but doesn't seem to matter I didn't read the first one 😁

Gentle gardening. My plans are always too optimistic…

The extent of my gardening is potting plants and dead heading. It's still satisfying. My flowers are nothing special compared to next door's lovely garden but I get pleasure from them. I also like watching the bees enjoy my dandelions ( the 'lawn' is about 3 ft high because I can't find a gardener just now)😁

I'm just finishing an online course I have been doing, will be a nice sense of accomplishment!
Otherwise I have been on taxi mum duty , as my children have various activities on a Saturday. I am about to take my son to go climbing, luckily they have bit comfy sofas so I can read my book and rest.

I know I need to take it easy as i tried to take my medicine this morning and choked on it. Losing my ability to swallow safely is always scary and makes me know I have to rest.

Does anyone else use storygraph? I like logging my books on there as I can look back on what I have read

I've not heard of that @CassandraWebb . I will look it up.

Hope you get rest. Choking on meds does sound scary indeed. I've found smoothies and kefir good because they're heavy and seem to push tablets down easier for me. I'm not severe though but I do think I am mildly affected at times.

Back in bed but need to get up, hungry and need loo. Had a bad couple of weeks sleep and really overtired but body is wired. On my Fitbit I get around 6-7 hours sleep a night but only a maximum of an hour's deep sleep, sometimes only a few minutes. Assuming this is part of my CFS. Moved house a month ago stupidly doing everything ourselves with hire vans and sack truck at DH's insistance but has really worn me out plus hurt my knee doing it and that's still really sore. Going to try and see the GP this next week. Still got loads to sort out in the house, unpacking clothes, moving things around it's a 3 storey too so everything is going up and down stairs. We also have MIL living with us and she's in stage 6 vascular dementia to add to the difficulty. Am just really drained I think. Today was planning to return stuff to next, do a quick very small Lidl shop and maybe help DH move a cabinet. Am debating whether to just leave it to tomorrow.

Oh that's awful, the worst sleeps always seem to come the night before something we really need energy for! It's typical.

I went to the chemist to collect my son's mammoth prescription. It is a month's worth so to be expected. I also baked apple crisps with him, I've watched part of a documentary on Disney+ and read quite a bit.

I’m home! Shattered but thoroughly vetted! Full spinal mri and hip x rays. Changed pain relief and have been referred to neurosurgical team.
L4 nerve inflamed and affecting muscles and nerve in hip, bum, thigh, outer calf and t
first two toes. L 5 disk is bulging and along with bone spurs is pressing onto the sciatic nerve and fucking up all the bits in between; hence both agonising pain and hip giving way when I transfer. I am home though on the sofa with my gorgeous dog!

Bless you. Glad you have cuddles. That little face will help. ❤️

I do hope that your colonoscopy went well. Mine wasn't a lot of fun!

I’m travelling the length of Scotland today for a weeks holiday. We’re lucky enough to own a house in a remote rural beautiful area (we used to live there and it’s our retirement plan). Made it from Glasgow to Inverness, dh is now in Tesco and I’m just relaxing in the car with the dog. My legs and back are killing me but it’ll be worth it. Dh looks after me so well, especially when we’re away, I’m looking forward to a weeks relaxation x

That sounds horrendously painful. I am glad you are home and getting dog cuddles! I find dogs are brilliant for sending if we are feeling sad or unwell. Mine gives me huge cuddles when I have a bad day

I'm coeliac - with IBS as a happy addition...😬. Please eat gluten for a while before your Endoscopy as otherwise you may get a false negative result. Can't remember how long you have to eat it to get the correct results, but you can contact the Coeliac Society for details (you'll find contact details on Google).

I'm so sorry you're having such a rotten time with LC, but don't give up hope. I caught Covid in January 2021 and honestly thought that I'd always have the terrible fatigue etc that goes with LC, but earlier this year I turned a corner. If I do too much walking one day (5,000 steps) then I'll crash the next, but can now function mostly like I did before the blasted Covid hit. Hope that you, and everyone else on this thread, has a better day today and that things look brighter tomorrow. Xx

I am coeliac too and don't do milk. Great fun.

They told us prior to blood testing it was recommend 12 weeks of eating gluten and prior to an endoscopic biopsy it was recommend 2 weeks of eating gluten but always consult your doctor.

Me and my son are also coeliacs!

I’ve ended up in a bit of a fibro flare. I was away in Edinburgh on Wednesday to watch Moulin Rouge with my mum and got home on Thursday evening absolutely shattered. I had a nail appointment on Friday morning and I could hardly walk home (it’s only 10 minutes to walk and I begrudge paying the £2.20 for a bus ticket when it’s only a couple of stops away). Had a nice rest day yesterday and this afternoon I’m going to see DD1 playing drums as part of a local music school’s student concert. Thankfully it’s in a church that’s only a couple of streets away from my house so shouldn’t be too bad to go there (and our local pub is on the way so it would be terrible if I needed to rest on the way home 😁).

Feeling even more like crap than usual, for no discernible reason. Lovely sunny day, but very windy. Went to put washing on the line. Couldn’t find the pegs, so asked DH if he knew where they were, he said he had no idea and hadn’t touched them. Eventually discovered that he had helpfully locked them in the new shed that only he has the key to, and forgotten. I am just so exhausted and at the edge of being able to function, that I was almost on the verge of tears as I took so much more energy than I was expecting. Pegged everything out. Came in and made myself some breakfast - out of nowhere the sky had filled with black clouds and raindrops were pattering on the kitchen window, so I had to rush out and get it all in again. FML.
I’m now back in bed for the duration. Apparently there’s some terrifically important football on this afternoon, so hopefully I will be left in peace.

Watched our church service on line, did 2 lots of washing, a 15 minute walk and now scrolling through mumsnet and X. Have a restful day, everyone!

I've taken my daughter shopping for her bag for secondary school. I used my electric wheelchair as standing around in shops makes me feel ill pretty fast. The centre is really well laid out but some of the shops are far too cramped for wheelchair users. It feels so frustrating sometimes! But she enjoyed herself and found the bag she wanted. Am in bed resting now for a bit

Stupidly stayed up late last night after being tired all evening. Suffering today.

I'm exhausted. Slept badly and my mcas has flared up. Can't stop sneezing and abdominal pain. I feel pretty miserable.

I couldn't sleep yesterday night so I was tired at church today.

We left before the shared lunch. Wasn't up to it.Oso many people. So much noise.
Our chaplain was in a serious corner and talked about the Israli/Gaza situation hoping for peace for the children. Can't blame him. It would be great but I'm not sure it's round the corner.

It rains and rains. So much rain today. And it feels cold.
I have had a nap then we came home. 30 minutes but it was really nice and I have done my duolingo.

We have packed our suitcases. We are going to London tomorrow. Love it - and hate it because it's exhausting. And also fun. 4 nights.

And I have snapchatted with two old friends. It's a way to stay in touch not leaving a warm comfortable chair.