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.

Aw hope it gets to you soon. Pain is very hard to cope with, and I'm sure mine isn't anywhere near that level.

@CassandraWebb sorry you did say new film. That isn't new. I've got Heretic on my watchlist but I don't think that's fluffy 😁🙈

Yes, there's a period adaptation that I think was meant to have been very good. I am planning to watch it when I finish the book. I think it would be a good one for listening as an audio book too.

I am rewatching BBC pride and prejudice (the Colin firth one ) at the moment , it's very relaxing!

I am ok with challenging books but can only cope with very light and fluffy films for some reason

Oh I really hope you can get your meds soon, that sounds horrible

Very little, was going to do a tip run today but went back to bed after sorting the dogs out and spending time with them this morning. Haven't been feeling great this week so I've worked from home but will have to go in next week. With a painful knee everything is an effort, waiting on x ray results, feeling like I'm just dragging myself around getting exhausted. Just got MIL washed and dressed and DH is getting her food. Getting dressed myself and will have something to eat. Feel a bit down, we moved a month ago and still lots to do as well as providing evidence to get the deposit back from the last place.

I did a first aid course, it was very useful but I’m exhausted now. Glad it’s over for another three years.

Thanks folks. Got my meds now. DD had been shopping with a friend so even though I hadn’t had my text yet she popped in on her way home to check for me. First lot are starting to kick in. I’m still in pain (I’m never pain free tbf) but it’s taken the worst of it off for now. It also doesn’t help that my period has started and thanks to peri I’m having the most painful heavy ones right now. 😭

Sorry to all those feeling rubbish or struggling just now. I’m not too bad, weary today as had a family birthday yesterday and went out for a meal with DH and DD which was lovely, I don’t always manage celebrations but I’ve rested lots to conserve energy and we deliberately went at a quieter time and that helped but usual payback today. Also managed to visit my mum this week, she’s 84 and pretty independent but hasn’t been well lately so I feel guilty when I can’t get over for a couple of weeks so that’s two positives for me this week.
Otherwise usual routine of resting/ pacing and getting bored/ frustrated at not being able to do all I need/ want to do. I’ve a good friend also with ME and we message a lot but otherwise rarely see/ speak to anyone other than immediate family. It’s a lonely illness for sure. I’d love any links to online groups if available.

I'm not a big film watcher- I'm too emotional these days. But I like the odd rom com like There's Something About Mary or Me Myself and Irene.

I like crime dramas but not horrific ones. I'm a big Vera fan and currently watching re runs on itv1.

I prefer to read but even that's hard atm so I've joined Audible and really enjoyed one of Anthony Horowitz's novels as an audio book.

Pm me for link to the new Me association discord 😊

@CassandraWebbClarkson’s farm is back on Amazon prime if you liked that.

I’ve just had a 2 hour nap. I couldn’t keep my eyes open. Spent the morning doing the chores (washing etc) and I find it very tiring so needed the nap afterwards. Tomorrow I want to plant out my courgettes but will need dp’s help as I can’t carry things as the bloody long Covid just seems to have destroyed my muscles in my arms.

i know I have to go into the office more than I usually would next week so have to pace tomorrow to save up some energy

I watched the Black Forest murders on BBC4 and it’s made me crave a Black Forest gateau!

Ha... I can't watch Vera. I'm from the north east and I find her accent too hammy. Plus geographically it doesn't make sense 😁

It's nice to look at though.

I love Shetland but I'm not from there. It is quite mad the amount of crime and murder there though on the TV show 😂

I love the early seasons of Shetlsnd but I've found the ones with Ashley Jenson a bit too graphic! The scenery really is beautiful to watch.

I agree Vera's accent does grate, I've just beared with it!

It's not the same with Ashley Jenson. I don't think it was the right way to go. I would have preferred a spin off with Tosh being promoted and a new younger male sidekick maybe. I like Tosh as a character. Jimmy Perez was great though and the original cast with Douglas H and Mark Bonnar (is that the right name?)

That said, Ashely Jenson is good. I don't dislike her.

What a great big TV and film bore I am 🤓🙈

I agree with all of that. I really like Ashley Jenson as an actress but not in Shetland. I loved Douglas Henshaw to the point of bordering on crush, lol. Tosh and Mark Bonnar (I'm not sure either but think that's the right spelling) were also great. Such a shame Douglas Henshaw left. The seasons were getting progressively more sinister but still watchable, but after DH left it was too difficult for me to watch and the scenes left me cold.

Just joined ME association discord. Couldn't work out how to pm on the app but link is on ME association main page

Awesome. Hope you find it good. 😊

I like it so far.

@ChampagneRose just seen that you have had some improvement to moderate/mild ME. Is there anything you have done to improve? Or did it just "happen"?

I have been watching an American YouTuber called Raelen Agle. She has apparently recovered from ME, so I do believe that I can get better.

@BerfyTigot Please be careful. There are a lot of charlatans that latch on to desperate people with MEcfs. Do your reading around anything that seems like graded exercise therapy (not recommended) or things like the lightning process. Some people do recover but there are many that say these miracle cure people were probably misdiagnosed in the first place.

Read up about pacing. Try and eat well. Check for anything that hasn't been checked that might be something else. But do not push through it pay loads of money for something because they do shiny videos.

I know some people who tried LDN and had good results and nurosym. I haven't had huge gains from the latter but maybe a bit.

I truly think acceptance is part of living well with MEcfs. Railing against it and searching for the cure is a lot of energy and stress.

Wish you well.

Can I ask those of you with ME have you been able to claim PIP for it? I get it mainly for depression but being referred for ME/CFS. Thanks

@MewithME thank you for your kind words. I know there are lots of charlatans out there. I'm only 2 years into fibromyalgia so a relative newcomer compared to some!

I find acceptance incredibly hard - how did you get there? Thanks x

I've never claimed. I still work and don't feel I need it though perhaps I'd work less if I did have it and it'd give me better quality of life. Seems very hard to get though for mild MEcfs. I've read a lot of people going to tribunal for it. It feels more stressful than it's worth for me but then some people really really need that money.

I think citizens advice can help with claims and tribunals.

Well, I'd it's fibro then I'm not as well informed to be honest. Maybe more people recover, I don't know.

I have my moments with this thing so I'm not in ok about it mode all the time, but I suppose it's been a combination of things.

I think I've got myself very well informed about it, so I'm not gaslighting myself but also not being panicky or overly pessimistic. I got the visible app early on and it has helped me pace and understand myself. I've not got any better but objectively, I have not got worse and I am still working.

I've grieved. I am still grieving but it's easier than it was. It can be incredibly hard watching other people travel and party and socialise, and incredibly lonely too. But I've recognised my strength that I can be alone and be ok.

I've connected with other people with MEcfs. I really feel this has been huge for me. Accepting I am actually disabled. Very very hard for me to say that at first and I still struggle a bit. But I've found MN helpful, FB groups amazing, and now thee association discord is there. Recently there's been a disabled staff network set up at work too. It feels so much better knowing you're not the only one and talking to people who understands.

I've tried to find pleasure in smaller things. I know that I can still sometimes do things outdoors which I treasure. I've still managed a holiday. I didn't one year but have done since, as long as I rest loads before and after.

Anyway, I'm getting v tired now so I'm going to conk out. Give yourself time. Acceptance is not giving up. Sometimes our loved ones don't understand this. Be v kind to yourself.

@BerfyTigot but you can allow yourself to crack sometimes. I was in a bad way a week or two ago. People on here were so kind. It really helped.