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.

Today I'm taking my son to his emdr therapy appointment and taking my teenage niece (who I'm basically surrogate mum to) to a housing appointment. Both ASD kiddo's. Hoping and praying for the strength to support my two little people today.

Hope it all goes well @Realisation14

It's our last day of holiday. It's been great to be away in many ways but ...as you know from my whinging (🙈) I have not found it easy. I have pushed myself.

We're doing a boat trip today so apart from the 30 mins drive there and back, hoping it'll be an easy day as at least I'll be sitting!

I don't think my autistic teen has found it too easy but it's not the place. It's us. He's at a tricky phase and I can't seem to get my head in the right place just now. I just feel sad all the time.

Hope the boat ride is fun @MewithME

@Orangesandlemons77it’s not as though you want to be ill though is it!

I’ve been marginally cheered by the Decode ME results this week - I contributed to that some time ago and had actually forgotten about it. What does worry me is whether I have passed this on to my kids. I wouldn’t wish this on my worst enemy. Still I hope it means more research and better research.

I’ve had a bad week where I felt fluey a lot of the time. It’s unusual for me as I had gone through a patch of feeling a little bit better (not improved but just not in PEM or feeling like I have to lie down all the time). Have decided to keep track of the supplements I take in case I can see a trend as I had added in Carnitine and I’m now wondering if that made me feel worse. It’s all such a minefield!

Boat ride was nice though as always bit tricky with DS. He enjoyed it overall though.

We got home today. You know I still don't understand my MEcfs. Every year I worry about whether I'll be welll enough for a holiday. Then somehow I do it, and do way more activity than is ever usually possible. I got back and I can barely go up and downstairs. Is it adrenaline? Some sort of override? The journey back was arduous and I didn't sleep well last night so I'm grateful for my own bed again. Not looking forward to more hot weather though.

Thanks to you all for letting me offload. I still feel guilty for whinging about a holiday which is such a privilege 🙈

I was chuffed about the decode me study too @ChampagneRose . I'm not very scientifically minded so not sure how the genetics work. My sibling doesn't have it but I do wonder if my mum does sometimes. She's more able than me and never diagnosed but she definitely suffers with post viral fatigue whenever she is ill. I don't think she necessarily has MEcfs but think there's something there. It's a bit vague for me to articulate.

There was a thread in chat or AIBU about the study which was just depressing so I stopped commenting.

@MewithME glad you’re back home and hope you sleep well back in your own bed.
I totally get it, I’m the same, we don’t get away that often but the holidays we have done, I’ve worried loads beforehand but then generally managed better than expected (and better than at home!) but then crash afterwards so yes I think it’s likely adrenaline. I also wonder if maybe I’m not doing the every day stuff I need to at home so all my energy can be used on fun stuff.

@ChampagneRose good idea to keep track of supplements, it’s hard sometimes knowing which help and which don’t tbh but I’ve definitely reacted to some at times.

Yes I feel exactly the same about the Decode me study in that it feels like a really positive step forward but then I also worry hugely about passing it on to my kids but then DH rationalised it a bit by saying that there still needs to be a trigger alongside a genetic predisposition so it’s just something to be aware of I guess.

Morning all. My own bed last night was wonderful. As always, didn't sleep amazingly well but I'm still lounging on it now 😁

Had a good cuppa and chat with my bestie this morning. Ds is gaming downstairs. Shopping will arrive later this afternoon and we have nothing at all in, so not sure what to do about lunch.

I'm aiming to do very little today! Laundry can go on...that's about it.

@Hotbeverageplease I think you're right about the holiday thing. Energy just directed at the holiday and not household stuff.

Sorry for the swearing but - fuck this day. That is all!

You can vent @Realisation14 !

Things are not easy for you. If it helps to offload, please do.

Realisation14 don’t* *apologise. Swearing is free, portable, open 24/7, it doesn’t leak or break and it keeps me sane so it’s a key part of my daily routine

I’ve also been holidaying with DC AuADHD and honestly it would have been so much less stress to stay at home. yesterday was a shitshow for me. Today in bed feeling like I have flu as a result.

Wishing you all a better day today. And a special if you’re supporting others at the same time as being ill yourself, which sounds like pretty much all of us are doing in one way or another x

I'm feeling weirdly ok ish. Physically kind of rubbish...I actually sat and watched nerves twitching in my hand earlier. Looked like alien was about to burst out. Weird! I'm very buzzy but so grateful the clouds have stayed here today and it's not as hot as expected. Tomorrow is not going to be good.

I had a long chat with my mum doing my duty, so glad that I could give her some support and I was up to it today.

I had another afternoon nap so at leasty body is catching up with some rest.

Hope you are hanging in there @Realisation14 , and agree with @FishFlaked . I'm a massive potty mouth! I have a book I need to finish actually called swearing is good for you !

Thanks everyone, just very little sleep the last few days in a row and worrying about my DS and trying to care for my older sister after her husband passing earlier this year - just all getting on top of me. Trying to find the energy to keep everything spinning.

Going to try to have a quiet day today, while looking after dad.

Big supermarket delivery today, and his gardener and cleaner coming, but not going to do any extras (decluttering, laundry etc).

@Realisation14 you have my sympathies- so hard to get decent, truly refreshing sleep.

@MewithME You've just reminded me to make sure I get an afternoon nap today. It's odd but I forget to make time for really basic things like that.

Hope everyone is surviving the heat!

I have bought a neck fan! It's great. Look like 🎧 but blast cool air around your head. Not looking forward to the temperature for next few days. It's torture in this house but I am going to see a friend for lunch today somewhere with Aircon.

I haven't done this for a while but as I am still on leave, I can rest before and after.

@BerfyTigot it's been lovely but not intentional. I've just lay down and conked out. My body is needing it but it feels nice. I think it just feels nice to know I'm not pushing this week and I'm gently healing a bit.

The vibration feeling is awful just now. I am going to get back on my vitamin regimen and see if that helps.

Poor you @MewithME, sounds really unpleasant. I always feel better after a nap, I just feel the need to be productive if I don't feel at death's door.

Hope you're all ok and resting in this heat. Hugs to @Realisation14 and @MewithME. I've finally asked my manager about working from home full time to juggle caring for MIL and looks like it's going to be approved for 6 months. Convoluted process then to extend by much higher up manager but good news at least. Not had the form or start date yet and manager is off tomorrow. Been putting off applying as was trying to cope and didn't want to feel cut off from the world like we were in covid. I'm realising its just affecting my fatigue getting up earlier to go back and to from work and the heat is exhausting. Hopefully I can manage my time better.

That's really good news @Stressybetty . But just remember to put your own lifejacket on first. If you are unwell, be off sick. Even if you are working from home. You may still need time off. I'm a fine one to talk....I know 😂

I have at least been good and taken my vitamins tonight!

@Stressybetty that sounds like a really good plan to wfh and hope it helps make life a tad easier.

@Stressybettycommuting is just the cherry on top of the cake in terms of exhaustion isn’t it! It’s another one of those things that until you’re ill, you can’t really fathom how something like that will affect you

I’m on leave for 2 weeks from Monday but feeling v guilty about not taking my kids away. I just don’t have the energy to do foreign travel with airports etc and need the rest to be able to continue working. My kids are both adults so it’s not the end of the world but ds has SN so if I don’t take him away, no one does if you see what I mean. My sister is a SN teacher so as long as Dp drives we can go down to see her so we might do that.

i am really looking forward to having afternoon naps the next 2 weeks :)

Got approved for 6 months initially to WFH starting now basically so very relieved. Plan is to manage my time and sleep better and also nudge MIL back into her routine because it makes things much easier. Loads to do cleaning wise but will try and pace myself. That's the theory anyway.

Hope everyone's doing ok today

That's great news! I'm sure it's a weight off your shoulders.

Morning all. I have to go into work today. I've been awake since 4am. 😭

Hope I can get back mid afternoon and have a nap before ds gets home.

@ChampagneRose enjoy your naps! They are lifesaver for me.

Just finishing a long stretch caring for my dad. So today i have a long drive back home which isn't terrible- audiobooks and plenty of snacks 😋

But I now have a couple of weeks to myself while other family memberstake over- woohoo! We've got a couple of nights in a hotel in Newquay as a holiday this year. It's the most i can cope with. And I'll probably end up doing some decluttering.

Hope everyone else has a good day

Have a good day with rest whenever you can grab it, everyone x

I recently received great results from my GP, confirmation that my complete diet overhaul has had an incredible affect on my organs, cholesterol and halved my inflammation.
I am still achy at times, still very tired at times.
But definitely in a much better place.
I am so grateful.
I will keep going on the clean diet and hope the results continue.

Wishing everyone well.