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.

Sorry yesterday was rough @Realisation14

Hope you get better from the cold soon and then start to feel a bit brighter.

I went out and did some day time cultural events. Then came home for a siesta. Now just got in from a gay area. Bloody lovely

Thank you, no luck on that bit yet my throat feels like a dirty ashtray. Whole body is stiff and sore. I went out yesterday for maybe 2-3hrs in the afternoon after spending all day Saturday in bed but alas I have woke this morning feeling like a bag of shite. I hope everyone else is having a better Monday morning.

My ear infection is back. Painful itchy and ringing ear. Fed up with it.

I also feel shite generally. I think I did too much cleaning yesterday to try and get rid of phorid flies which rather like my window frames.

I'm supposed to be going to a garden centre cafe tomorrow with a friend but no idea now..

Urgh ear infections are the absolute worst! You have my full sympathy. Can you rest today? I have responsibilities today unfortunately that I can't get out of, so just hoping I can drag my body through them.

Thankfully yes I can. I'm sorry you can't. I remember the feeling of being unable to all too well. It's so hard.

I'm prone to infections in that ear. The antibiotics made me so unwell I really don't want to take anymore.

Ear infections are the worse. I hope you soon feel better. Ibuprofen is better than paracetamol they say then my youngst had them.

Thanks good to know. I've had a stomach erosion in the past but I'm OK with ibuprofen and aspirin as long as I take omeprazole as well.

At least that is something, I hope you have some good TV shows lined up or a nice book to read?

Having a child with many issues means I don't get that many rest days despite no longer working 😕 but hey-ho, can't change that.

Is it definitely bacterial? Are there no drops you could use instead of antibiotics? I had an ear that got infected almost constantly for a period of about 4yrs so I know how shitty it is, I still have problems with hearing and ringing or whooshing in that ear as I think it's now damaged but thankfully the infections finally stopped.

Oh yes always be careful with the stomach. It can be so hard work to find the right painkillers and tolerate them.

I was the carer for my severely disabled son for years...I completely get how hard it is having to keep going.

I tried some otex drops but I'm allergic to them. I think I will try olive oil for a few days and see if that helps. I have mcas so it could well be simply congestion.

And yeah, am reading lots of library books when I have the energy!

@Idontknowhatnametochoose I love reading too, my sister in law and I swap books around when we're finished with them to save money lol. Do you use the Goodreads app?

Definitely give the olive oil a shot for a few days, it can be a life saver for ear problems.

Being a carer is so hard isn't it? I'm also half trying to look after my older sister who's husband passed a month ago and who broke her ankle so badly it needed operating on at the same time as the death 🙈 such is bloody life.

@Idontknowhatnametochoose sorry to hear you’re struggling with ear infections, they can really make you feel awful can’t they. I struggled with persistent ear infections too for a few years so I totally get it. It’s interesting there’s a few on here who have said the same. I did once have a dr suggest the constant infections might be linked to my immune system not functioning properly due to the ME which made some sense. I hope you start to feel better soon.

Another reader here too and I recently signed up to the audible offer so I’m currently listening to more audio books than I am reading.

I feel pretty dreadful here today, I went out for a coffee yesterday with DH and DD which I can occasionally manage on a better day if I do little else but we had to park a little further than usual ( only couple of mins walk from the cafe) but I guess there and back was obviously too far. I slept yesterday afternoon too but still feel rough today and my legs are throbbing like crazy still. So frustrating.

Hope everyone else is having better days.

I am feeling glad the hot muggy weather has passed by, there is a bit of a breeze today and it feels fresher.

I have not made it out for a walk or aqua aerobics which I sometimes try and make on a Monday, was in bed most of yesterday, started my period which doesn't help.

Today put in an MR about my PIP as it would get taken away should the new changes go ahead, plus they have only granted it for 18 months and previously it was 6 yrs. I will see what happens.

Finding it a bit stressful with the news of the PIP changes, but it seems today they might be halting the vote as over 100 Labour MPs have written with concerns. At least they are listening, I suppose

Kind thoughts to everyone for a good day today or at least, some time to rest.

@Orangesandlemons77 I hope the MR is successful and the award gets extended. It’s difficult not to worry re PIP changes isn’t it but I think the news re the MPs opposing it today is positive.
Im awaiting my assessment having sent in the renewal form last August. On one hand, I wish they’d just get it over and done with, on the other, I know the stress of the assessment when it does happen and the worry it brings will cause a crash so I don’t want that text!

Best of luck with yours, it is stressful and a drawn out process when they are taking so long with it all

I can so relate to the health crash every time you get a stressful text or letter. When the PIP stuff was first in the news i felt like I had flu for days. So upsetting and scary. I didn’t used to be like this. I don’t get PIP. I can’t even face working through the massive PIP form yet after having to slog through the ESA process. Really hoping that the government will come to see sense on this.

They seem to find it impossible to accept that global pandemic and ongoing cost of living crisis plus and unrealistically high retirement age means that there are very likely to be lots more people struggling with their health and mental health and unable to work like they did or not able to work at all.

Hi, no I didn't realise there was an app for it. I will have a look. I have Audible which I find really good for times when I'm too tired to read.

Being a carer is SO hard. And lonely. Especially when we have our own health issues. I struggled on until i broke. I really hope it gets easier for your sister and you.

Thank you. Yes I absolutely think my ear infections are linked to my immune system and mcas in particular. Not that the NHS can freely acknowledge it!

I'm sorry your legs hurt so much. I've had the exact thing from walking slightly further than normal and it's so frustrating. I hope they're better tomorrow. It normally takes me 3 days or more.

@Orangesandlemons77 I'm worried about pip too. I get it but not sure how many points for each I was awarded and whether I'd even get the same now. Mine is due to be reassessed in 2027. I'm hoping and praying there's enough rebellion from mps.

@FishFlaked I am exactly like this with any stress, right down to the flueyness. That's one reason I can't work- I'd be unwell for the slightest degree of mental or emotional stress.

The app is great, you can keep track of your own reading but also read reviews of books and keep a list of books you might be interested in reading. Audible is so good when you need to rest, I use it too when I'm beyond focusing on a book.

Sorry to hear you broke from your caring responsibilities, that must have been so hard to accept that you could no longer keep going.

@Realisation14 thank you, yes it was incredibly hard. It has taken many years of counselling to get some degree of peace with it, but I still feel grief for the way my life has panned out.

I hope everyone is as OK as possible. I'm very tired after meeting a friend yesterday so not doing much today.

@Idontknowhatnametochoose glad you managed to meet up with a friend yesterday but sorry you’re so tired today.

Still got payback here too from a brief coffee out on Monday but hoping maybe tomorrow it might ease up. I have rested in the garden a bit at least as it’s pleasant here today, not too hot, not too cold so I’m less fed up than yesterday when I was having a sick of chronic illness life day.

It’s actually quite comforting reading other people feeling the same way but I also have huge sympathy for you all. I just wish I could have one day when I didn’t feel exhausted all day - I can’t now remember what it feels like to feel normal anymore :(.

We are meant to be going away on Friday (just to Wales). I didn’t go on holiday for 2 years after I got Long Covid as I couldn’t see the point. Was too exhausted to travel and even if I managed to get somewhere, all I could do was lie in bed! So now we just go somewhere not too far and I can rest and lie down while everyone does activities and enjoys themselves.

I’m also in a long Covid research group and got some information that I have neuro inflammation markers which makes sense - still no treatment options but I guess at least there’s someone interested in looking to see what is causing some of the issues

hope you are all coping with the heat