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.

Been away for a few days and back to work tomorrow so today I am mainly laying on sofa watching my tv shows while DH huffs and puffs about needing to sort out his half of the garage so that we can have EV charger installed tomorrow - he’s now making some lunch for us. I have put a load of washing on to take advantage of octopus hour but apart from that no intention of getting dressed and will probably nap after lunch.

Am on the sofa in pyjamas, eating ice-cream while they sort themselves out.
Am not moving!

I'm liking the solidarity with the telly watching. I'm going to soak in the bath now. Very decadent at 4pm, but making the most of time to myself.

I think I'm going to make veg stew and dumplings for tea. It's healthy, relatively low effort and comfort food. I feel like I am welcoming in Autumn. I shall accept summer 25 is done. 🥲 It went too quickly but made some nice memories here and there I suppose.

Feeling miserable about going back to work tomorrow. Really tired. Can’t imagine working a full day tomorrow and I know I have meetings till 7pm and have to be in the office Monday and Tuesday though only because I’m seeing a doctor on Tuesday so need to be in town.

I’m trying to keep a lid on my resentment but I wish at this point that I was married and could stop working. A friend of mine has got very mild post viral fatigue and has quit her job to recover as her dh’s salary is fine to cover all their costs. I am the least jealous person alive but honestly, dragging myself out of bed every day completely exhausted is so hard. My period came today too so that’s probably accounting for half my misery. I mean I’m 52, why can’t they just bugger off! I’ve also noticed that I tend to feel this way after every break I have from work - though I absolutely don’t believe in graded exercise, I do think that the less I do, the less I’m able to do. Not big amounts but small increments if that makes sense. I can’t nap normally when I work but then when I do on holiday and have to go back to work, it just makes it harder if that makes sense. I still do it though!

hope everyone else returning to work tomorrow has reasonable days.

@ChampagneRose I relate so much. My FB MEcfs group has lots of people who say to give up work. You just can't if you are single. It's scary so I try not to think about it.

I half made my stew. I realised that I have over done it even from my sofa day... I came upstairs to have my bath and here I am in bed 2 hours later. Stew not cooked. Bath not had.

My son has been texting about not being fed at his Dad's and then he complained about me replying to messages because I was too fast or said it wrong and now I am having a cry because I am sick of it all. Autism, and useless ex, and pain and exhaustion and yeah.... flipping work tomorrow when I feel like shit.

Moaning again ...God I am a rollercoaster. Sorry 🙈

I think the routine is somehow a bit easier...though I crave breaks....I feel it's slightly more predictable. Doing the big journey to see mum has really wrecked me this time. I'm feeling horrendous.

I know what you all mean about craving a break but actually sometimes being better in a routine. But I LOVE a daytime nap if I'm able to.

I think graded exercise doesn't work because you're encouraged to push through and not listen to your body. And then we end up with terrible PEM 🙄.

@MewithME i know what you mean about feeling sad thinking you'll probably never go to places on Destination X. I watched Race Across the World a while ago and felt the same.

But I've started looking at cruises thinking that I might be able to manage one. They're apparently set up for old/ disabled people. Room service available. I fancy the Norwegian fjords. So I'm saving up to do one. Won't be for a couple of years but it would be amazing to see somewhere different even just from a balcony in my cabin 😀 A girl's gotta dream.

Got some sleep last night, despite my arms and shoulders being very sore.
Sleep makes such a difference to my mental state and energy level.
Feel a bit human again.🙏

So sorry @MewithME It is so difficult when you get a ‘break’ and still the mental load stays. My husband did that to me badly on Saturday causing a load of stress, the knock on effect was not sleeping and a flare.

Anything you can do to make healthy meals easier to prep. I have one of those moulimix style electric cutters/graters, so I can prep veggies without having to do a load of cutting. Trying to get better at meal prep.

Have a great drink to replace some of the supplements - blend lemons, ginger, turmeric and black pepper with honey and a cup of water. Lives in the fridge for a week.

@ChampagneRose I know the feeling waking up exhausted and having to drag yourself into work. Are you able to apply to work from home at all as a reasonable adjustment? Am 52 too and in peri, seems neverending. @BerfyTigotNorwegian mini cruise on my bucket list too.
@MewithME so sorry you're feeling crap, stress and adrenaline spikes are the worst.
Tried caffeine free pepsi max last night and feeling very ropey today with bad stomach. Apparently they add sodium citrate to balance the pH and can affect IBS sufferers. That's 7 cans left for DH to drink then!

Hope work goes as well as can be for all those returning today, I’m not working but do better with routine too. My teen is back at school next week so I’m ready I think for a bit more structure to the day. Hope those having rough spells are managing best they can.

A long run of bad days here and my emotions have been all over the place. So frustrated with my body and feeling like I miss out on so much.

@BerfyTigot I was very very lucky to be able to do Norwegian cruise a few years ago now and would certainly recommend as an ME friendly holiday but it’s worth saving to get a balcony if you possibly can as the scenery is fabulous. My ME was probably worse than it currently is tbh but we hadn’t had a holiday abroad for 8 years as I just couldn’t cope with airports and so we gave a cruise a try and just loved it. I took a mobility scooter (there’s a company that hires them) as the ships are huge and managed to get off the ship a couple of times for short spells but the loveliest part for me was just sitting on the balcony watching the breathtaking scenery float by. It was incredible for someone who had barely left their house for many years! I actually cried when we reached the fjords it felt so emotional to be there!

Been away for a few days and it was nice to have a change of scene but the heat meant it was hard to sleep which led to anxiety and fatigue kind of spiralling, ended up feeling rough despite being in a a beautiful place..kind of glad to be back in a way although the journey back was a bit of an ordeal, very busy and delays.

feel guilty for moaning as was grateful to go away at all and the break from cooking etc was nice. Back to school this week and DS will be starting sixth form so went to pick up stuff for that today.

On Norway etc, I once went to Iceland some years back as a student and it was amazing. Air felt very clean.

@Greenvases so glad that you got some sleep. It really does make all the difference, doesn't it?

@Hotbeverageplease that sounds perfect. I wouldn't mind staying on the boat while my husband went walking. I also feel tearful if I'm well enough to do something that I haven't been able to do for a while.

I didn’t go into work yesterday as I just felt too ill. Had an early night and I’m in the office today. Hopefully I’ll get back into a routine and it will be easier. Already can’t wait for the weekend when I can rest in bed again!

@Orangesandlemons77 I also loved Iceland. Such a lovely calm way of life, friendly people and lots of space and fresh air.

@StressybettyI’m meant to only be in the office 3 days a week but we have a useless HR department who are really gossipy so I’ve stopped speaking to them and just manage it all myself. Their attempts to ‘help’ only made things worse so now I just do what I can and no one has made a fuss yet. Unfortunately before I went on leave, people scheduled in person meetings which couldn’t be moved which meant I was back in 4 days a week for several weeks and I just couldn’t cope with that so I’m going to try and be a bit more disciplined this time.

Morning folks. I'm still feeling terrible. So much so that I did a covid test last night. Negative but I have 'the headache '. I've done this before.. assuming it's PEM and I've actually got a virus.

Anyway, I'm supposed to be in work today but I'm cancelling the meeting (or at least the me being at the meeting...they can carry on without me). I know I need to be very careful. It's a very busy time ahead. The new boss has scheduled loads for next week and I don't think I can do all of it.

I had best get ready and on the computer I suppose. I'll plod through at home.

@ChampagneRose Ah o.k, I was 60/40 split, 3 days a week in office but as long as we did half our shift we could go home in our lunch break and finish the day at home. I've just changed to WFH fully being a carer as MIL's got worse and it was also having an effect on my fatigue. So I was ending up owing days at the end of the month.
@MewithME Ah no, hope you feel better. Next week sounds difficult. Hugs.
MIL up virtually all night wide awake, still awake now. In her room with a film on pacing about so fingers crossed she will crash out in the bed. Am working now but wired and on edge. DH gone to bed.

Long covid....Thought I was nearly over it (again). Daughter in London's 1st baby is now 8 weeks. Been staying in a hotel nearby. Gone into a crash. Going home...

Hope back to work went smoothly for those back this week. I have been out of work for just over a year due to a rigid workplace that couldn't support me. Ironic that it was OTs that couldn't support pacing and adapting the role 🤦‍♀️

I hate being out of work and the stress that comes with the lack of money. Hoping to find something suitable in the next year. Need to gradually work myself up to replicating a work day at home to make sure I can manage it though.

Im another one who would love a Norwegian cruise. It looks amazing. Hoping its manageable in the future.

Sorry to hear of those who are struggling. Hope things improve soon @TryonemoretimeSorry your feeling rubbish. The long Covid rollercoaster is psychologically damaging. Take it easy and hope your ok

The day we travelled up, I felt great. Went for a walk around a local park. 10,000 steps in all. More steps than ever before. That was Monday. It's a bit frustrating. I really wanted to stay longer but the exhaustion is terrible. Just travelling home will mean I'll be shattered afterwards. Hope everyone else is having a better day. X

I have found since my diagnosis that I have zero tolerance for those around me, particularly my husband.
He's not a bad man, but fundamentally selfish, self absorbed and a workaholic.

He's also generous. He is very rigid and some changes in his work environment has made this so apparent.

He cannot bear to be inconvenienced by anyone.
I have absolutely no patience for it or him and am making that very clear.

I am so cranky in myself. I want a desert island for a bit.
So done with looking after others.

Just been signed off for another month, but having a flare up (I have an AI inflammatory set of problems) … it’s currently feeling pretty rough in my wrists, hands shoulders and legs/ankles/feet - joy! I’m enjoying a glass of wine whilst DH and DD cook dinner then I’m off for a bath and early bed!

I need a bit of desert island too. DH is taking an extended break from work, something he absolutely no arguments needs to straighten out his head and get some kind of perspective. He happily potters round doing various bits in the mornings, then wants some lovely couple time. He has no idea how exhausting just 'popping out for drive' in the afternoon can be. It throws all my careful pacing into chaos, then I get crabby about having to explain how much pain I'm in. The pain stops me sleeping, then another delightful day begins.

Hello all. I'm still feeling crappy. Though aunt flo has decided to visit (I'm 51 FFS ... When will the random blobs end? ) so this could explain why I'm not sure if I'm in a crash still or why I feel so awful.

I'm not convinced it's just PEM or fending off a virus.... Likely PEM and menopause I think. I feel very headachey and joints very painful on top of slight sore throat and my usual tinnitus and buzzing.

I envy my colleagues. I look at them in meetings and try and remember what it's like to feel normal while doing my job.

Anyway WFH for a couple of days at least and having a lunchtime flop in bed as I write.

It's hard being single with MEcfs but then @TheodoraCrumpet ...I hear you ! Dealing with other people's wants and needs is tough. My son is very good but I do feel guilty and often push when I shouldn't because I feel he's missing out because of me. Can you retrain your partner to do things in the morning if that's better for you?

I always peak in the morning and slow down as the day goes on.

I must admit I didn't understand this type of relentless achy pain until I got it.
My visitors have left and I'm just shattered.
Intend to be in bed so early tonight.
I need a very quiet weekend, not sure I'll get it.
Am planning a desert island weekend away.

I understand that feeling MewithME I'm 49 and feeling very similar. I wonder if any HRT might help? Mind you, it's helped me a bit with hot flashes but not with the other stuff you are describing unfortunately.

I'm getting a lot of comments from DH about how I coped OK on holiday and now am back in bed again. He doesn't seem to understand I struggled while away and have kind of crashed now, I was sleeping from e.g. 6pm until morning yesterday, still feel tired though.

I have the appt with the fatigue clinic end of the month and hoping if I show him the letter from that (if it is supportive) he might understand a bit more. I think he thinks it is depression. Which is also horrible but not the same thing really.