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.

Hope everyone is coping best they can in the heat and those working have managed to rest over the weekend. I like the sun generally but the fatigue does ramp if it’s very hot.

Another one here who finds I feel worse if I don’t eat well. It can be a vicious circle though as bad days I just want toast even though I know bread especially makes me feel worse but I don’t have the energy to prepare much else. I haven’t done well food wise lately and it’s having an impact so I really need to work on that this week.

I mentioned missing my dogs on here a week or two ago but not quite ready to take the plunge with another just yet. Well we’ve found a great compromise and have met with a gorgeous little sausage dog on “Borrow my doggy” who needs a bit of company sometimes when his mum travels for work. She’s dropped him a few times just for an hour to get him used to us and today he sat on my knee for ages bless him. He was quite settled with us today. So that’s my little spark of joy for the week. Really lifted my spirits and it’s nice to have his visits to look forward to.

I’ve had a busy time recently dog and house sitting for a friend after she had a bereavement. I was then at the funeral on Thursday. Been in an absolutely massive fibro flare since I got home. I’ve slept so much today it’s crazy but it has helped a bit at least. And because DH and DD are working I had to pop down to the shop myself (needed stuff they don’t deliver). It’s honestly just round the corner but I didn’t think I was going to make it back up the stairs (we’re in a first floor flat).

It’s my birthday on Thursday and I have darts practice then too so I think I’m just going to focus on a relaxing week so I can have a nice day then.

Hope you had a happy birthday @Tarkan

How's everyone else doing?

Dull day here. I'm rewatching the good wife for the umpteenth time but it's comfort TV for me.

Not good here. Lots of migraines and feeling very weak recently. Today I'm feeling emotionally low too. Back to watching vera!

Thinking of everyone.

@Tarkan happy belated birthday. Did you enjoy it?

Yep. More telly here too today. I've got that fluey feeling from MEcfs. It's not surprising though after a mega effort last week.

The fluey feeling is awful. Definitely a sign of overdoing it. Hope it passes soon..

Desperately trying to tidy my house for a valuation . Between huge doses of morphine.

Terrible fatigue for the past few days. I've pushed myself too much and have crashed badly. Dozed on and off all day today.

I feel like I'm going backwards.

Mentally I'm becoming miserable too. I have nothing to look forward to. The only thing that's going well is that im losing weight, but even that feels a bit pointless.

Hope others are doing better.

Aw @BerfyTigot I have my moments struggling with a lack of stuff to look forward to. I don't always feel like that though so I hope it will pass for you.

Think I'm in a crash today too. Back at work tomorrow plus a pointless doctor's appointment. Not even sure why I booked it now. I think I just wanted to make sure someone still knows I'm here with MEcfs and it stays on my record.

Losing weight isn't pointless if it improves your health. I'm the biggest I've ever been. I feel like a completely non sexual and unattractive thing just now but no idea how to lose weight now. I don't think I eat a lot. I probably don't eat as well as I should but I'm too exhausted to think about healthy meals and cook healthy meals....I think I'm having more ready made food than I ever used to.

@MewithME I'm on the much-despised jabs, which has helped switch off some of the food chatter in my head.

It's made it easier to eat smaller portions, but ive realised how much food regulates my mood.

But thanks for the reminder that this will pass. I know that something will change to make me feel better soon 🤞

Slow day here, catching up on washing. Just eat order for extra milk and bread etc. Knee as worse as it's ever been but not surprised after doing too much this week. Bacon sandwich and finishing Vikings Valhalla off. Agree with the weight loss difficulties, I need to lose around 4 stone, came off venlafaxine a few months ago and taking LDN but still having to resort to drinking fat coke several times a week at work and craving sugar. Lot of bloating and and I'm in peri-menopause and on HRT. Hoping to find the right balance once I find the right LDN dose. Think I probably just do too much overall and constantly running on empty.

I completely get it. I've been so weak snd exhausted and suspect the m.e and mcas are worsening with age.

I struggle a lot with pointlessness too. But I try to focus on the people who would miss me if I wasn't here because I make some sort of difference to their lives. And day to day I focus on my animals because, hard as it can be, they depend on me for everything. I am their world. So I plod on.

It's incredibly hard though. I've lived with depression since I was 16 and m.e since 19. It all feels too hard a lot of the time.

Yesterday, had fatigue induced anxiety but managed dog walk and supermarket to try and get my phone fixed - they couldn’t fix it. Then did housework. Afternoon felt better so bought a present for someone.
today, husband has to do the dog walk if I go to my sport (very gentle) in morning. By second game, had massive fatigue - hit a complete wall. Had a zzzz this afty and feel better so just pottering. Getting fed up of being poorly every weekend to then work the week.

Hugs all round I am sorry that some of you are really struggling under the weight of poor health and all the things that that brings, at the moment.

I’m getting more and more symptoms at the moment despite in theory removing some stresses. I worry about whether to carry on missing out on quite a lot of things and try to pace, or whether to do as much as I would want to do to try to save my sanity and then crash, knowing that health wise things are getting a bit worse all the time anyway.

Wish I had a crystal ball, but then other days I feel glad that I don’t. It’s confusing.

I had a lovely birthday thanks. Darts practice was called off but I was already out and had my darts with me so went along to the pub anyway, one other team member came down then my DH, DD, parents and a friend and her partner joined us so we had lots of drinks and had fun playing darts all together. Probably more fun than having an official practice.

Sorry to all those struggling just now and hoping today is a tad easier. It just feels relentless at times doesn’t it.
A quiet day here on the sofa listening to an audio book as I went out with DH and DD yesterday for lunch and so really crashed today but it will pass I know.

@FishFlaked I totally understand that dilemma of missing out activities to rest/pace or push through and suffer the crash. It’s a difficult one as for me, it was not listening to my body and pushing through ( through necessity rather than choice) that caused my ME to worsen long term so that in turn then made me cautious of not repeating that same pattern.
I think I came to gradually realise there’ll always be payback from any activity and for me a day or two of payback is sometimes worth it if it’s something I really want to do but it’s very much a balancing act of if I do plan something, making sure it’s as manageable as it can be with rest time immediately before/ after.

@BerfyTigot I’m so sorry you feel like you’re going backwards. Been there and it’s a scary feeling but hang on in there.
Well done with the weight loss though and be very proud of yourself for that as it’s hard enough especially with a chronic illness.
I lost 3.5 stone in 2020 and kept it off for a while but over time I’ve gradually regained 2 stone. I’m trying and failing to lose it again and have thought about weight loss jabs but worry slightly about side effects on top of my ME. Have you been okay with that?

@Hotbeverageplease thanks for the motivation. I have vomited and had diarrhoea caused by mounjaro.

But the benefits outweigh the side effects for me. I have halved the dose so I still get some benefit without the side effects.

Everyone responds differently though and lots of people seem to sail through without any problems at all but they don't necessarily post on the weight loss injections threads.

Been jabbing for 8 weeks now and lost nearly 9 kg. Lots of people losing faster than that but as I'm basically sedentary, I'm ok with that.

There are a couple of doctors with YouTube channels who jab. Kevin Joseph and Emma Anders are both very good.

What audiobook are you listening to? Always looking for suggestions for sofa days.

@BerfyTigot thanks for the response re the jabs, interesting stuff and I’m glad you’ve found a dose that suits you without too many side effects. Hope you don’t mind me asking, I was just curious how it might affect someone with ME. I can cope with some side effects just not an increase in fatigue but I guess I’d have to brave it and see. That’s a fabulous weight loss btw!

My current audio book is ´The keeper of stories’ by Sally Page. Quite slow and gently paced but I need that this week and im enjoying it.

Thank you for this. It’s interesting to hear someone else’s take on it. It’s hard as time drags on into years of being debilitated and now some symptoms seems to be getting a bit worse, to know what might helps, or what’s worth trying.

I am conscious of normal life passing me by and wanting to not be restricted by illness, but not really knowing whether there will be a payoff of improved health if I do really cut down on what I am doing (which is at an absolute bare minimum already anyway).

I’ve had to pay more attention to trying to manage the pain associated with my condition, than managing the chronic fatigue, but maybe that should shift focus now.

I'm on holiday in Italy. Yesterday we visited a pretty nearby town so today I have lay by the pool in the morning in the shade with a book, this afternoon I slept in the hotel room. Tomorrow we're going to attempt another short trip in the morning then I'll sleep in the afternoon.

I'm so happy I can do these things, I know many of us can't. But it's also shit. Poor dh has been a bit lost today because I really haven't been able to do anything. Were going out for dinner tonight.

I think you've done amazingly well to do what you've done. Hope you are ok in the heat.

Italy sounds lovely, hope you can relax and enjoy some things as well

I have a sun parasol thing. Like a folding uumbrella but to keep the sun off. It's amazing. I can create mini patches of shade wherever I am. It works really well, I can feel the change in temperature whenever I put it down.

It was quite cheap but I think I might invest in a bigger and better one if I can find one.

@FishFlaked I hear you, it really is a difficult balance and probably slightly different for all of us as we’re all in slightly different situations I guess.

@User57713 that sounds amazing to be in Italy and great you’ve been able to manage a few things but yes it’s still crap having to rest and pace even on holiday but hoping you can manage a little more tomorrow.

How have you all been coping with the heat? I'm so glad it is a bit fresher today, we even had some rain earlier.

Got an email saying my questionnaire had been received and the waiting time for the fatigue clinic is around 20 weeks from now (it's already taken a month or two to get to this point)

I know there's a few of us with this on here, I wondered if anyone had been referred to a clinic like this and was it any help? they said something about writing a plan or something.

I wondered if they could give a diagnosis as well