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.

My therapist has told me that with fatigue-based illnesses we can exhaust ourselves when we feel well enough to do stuff. Maybe because of guilt

So true.

I had a bath tonight. I love a bath. I used to fill the bath, get in, get out, get dressed.

Now I fill the bath, bring a chair into the bathroom, put a towel over the seat, one over the back of the chair. Bring in a glass of room temperature water.

Have my bath, lie there way longer than I want to trying to summon up the energy to climb out. Climb out, sit on the chair wrapped in a towel, drink my room temperature water (because cold would make my heart race), keep sitting there until I feel ready to get dried and dressed.

Sometimes the getting out takes longer than the staying in.

I also read in the garden today, what a coincidence! It was absolutely lovely.

Just back from going out for beers with an old great friend. Went for nachos, and a few beers.
Completely forgot about my clean living.
Will take the hit and be good tomorrow.
I was aching before I met her but feel the lift of her wonderful company and am thankful for it.
I am finding the tip of verbalising my blessings to manifest good things to be very positive.

Woke up insanely early (about 2.30), gave up trying to to get back to sleep and came downstairs at 3.15. It’s going to be a loooooong day.
Will try to nap later.

Woke up at 3.30 with terrible heartburn which is part of my suspected condition but a relatively new symptom for me. Sympathiea to everyone who finds it hard to sleep. Hope you can rest today.

I got a couple more hours sleep 6-8am so am more human now.

I was awake at 4am. Luckily I go back to my sleep easily most of the time. I haven't done breakfast yet though. I must move. I feel utterly exhausted this morning.

@User57713 so familiar- you've described my bath routine completely!!

Having a good day today, already been to corner shop for a few bits.

Will try to get out in the garden today read again. Also want to do 10 mins sewing. And scheduling a nap.

Hope everyone has a good day.

I slept like a brick for 8hrs last night which only happens maybe once or twice a month so I'm happy this morning and feeling refreshed for once! Won't last long though as we all know lol

Attempting to host weekend guests on less than 4 hours’ sleep. Wish me luck…

@MewithMEhope you’re feeling a bit better. I also get weird sinus things that make me feel so much worse. I think I had chronic sinusitis before I got this (and it may well have been a contributor). I’ve had some success cutting out dairy but the biggest help was using a saline spray. Just out of coincidence I saw an ENT (when I was having an allergic reaction) and he said my nose was v dry inside and that can often make sinus pain and also lead to infections. I’m in my 50s so I think my body is naturally getting dryer so keeping it moist has helped with the pain. I only mention this in case any of it is helpful!

I cancelled the thing I was meant to be doing on Friday as I was too tired. I know a lot of us end up cancelling things but it still makes me a bit sad that we have to.

I didn’t sleep that well last night but I have nothing planned all weekend so I’m going to go back to bed shortly!

I also get weird sinus stuff / pain and once had a CT head scan which picked up on sinus congestion as well and asked if I had a sinus problem, wonder if it is related to ME / CFS? It seems to flare up along with throat pain at times.

A quiet day here, don't have the usual visit from an elderly relative (take them out for coffee and some shopping locally) so it is nice to have a bit of a break.

Recently I have been pushing back a bit, cancelling things more, I had a funeral and family visit recently and both just wiped me out for days afterwards so I'm stepping back a bit.

Hoping for a peaceful day for everyone and hope you can possibly catch up on some rest those of you who have been up in the night.

I was up in the night too, pain and took some of my meds to go back to sleep. I'm a bit worried I rely on them for this at times but it does seem to work I suppose..

Melatonin 10mg, has been a hit in this house, recommended by a friend with fibromyalgia. It helped her so much.

I tried melatonin but it didn't help me unfortunately. Glad to hear it helps others though.

@ChampagneRose @Orangesandlemons77

I haven't had particular sinus issues before though always had allergies. Weirdly I stopped having hay fever after pregnancy. I had this odd virus (poss COVID) before Easter and that was similar to this. It is so strange with MEcfs. I do think viruses seem to just come back again. It's almost like an echo. Like the MEcfs then mimics it next time you crash.

I am getting better thankfully. Still painful but certainly better than it was.

V interesting thought about being drier at my age! That makes total sense. I am also having more baths than showers so probably less steam too. How do I keep it moist (hate that word lol) up my nose? 🤔

Afternoon all, ME/CFS here, I get sinus congestion a lot too, cold/flu symptoms seem to kick in when. I've overdone it, I take Sainsbury's high strength congestion tablets. I've been told in the past that I have very small nasal passages so I don't know if that's a factor. Melatonin doesn't work for me either. My MIL takes it, she's on 5mg at the moment, I think she'd be up and down half the night without it. She lives with us, has vascular dementia around stage 6. On my Fitbit I get an hour's deep sleep at the most whatever I do and it's supposed to be 25% I think. If I could get a normal amount I think I'd feel so much better.

@MewithMEthe ENT recommended this one https://www.chemist-4-u.com/neilmed-nasogel-spray-30ml

it doesn’t really have a taste which is good too - I spray it in the morning and night. Seems to be helping a bit.

Thanks @ChampagneRose . I'll give that a go

Well I've crashed tonight and feel truly dreadful. No energy to do anything but lie in a dark room. Every bit of me hurts and I feel woozy if I sit up. I’m away in Scotland wirh family to visit my son and gf who live here. We flew up yesterday and journey was a challenge with delays and lots of waiting around at every stage. I was shattered but thought I coped reasonably well. Rested in air b n b last night, slept well & felt better this morning so managed a couple of hours out today using my scooter. Rested this afternoon with the plan to join them for food tonight but crash came on very suddenly and had to stay in bed whilst everyone else has gone out to eat. It is what it is I guess and I know I just need to rest but honestly I feel so awful I could cry. I find it frightening when my body feels like someone has literally pulled the plug out. Sorry for the depressing post!

Aw @Hotbeverageplease that's ok. We're here for you. It's so disappointing but also understandable. Just rest as much as you can. I felt terrible last night. Today...I've done so so much better. I feel so much more positive. Ride the wave. Sending hugs and sleepy vibes. Get some rest.

That must be so frustrating when you have travelled so far to see family HotBeverageplease maybe if you rest up tomorrow will be better. Kind thoughts.

Sorry to hear about people crashing/struggling. Today i am sitting in the garden mending my dad's trousers 😁 Didn't sleep well last night and didn't manage to nap yesterday so need a very quiet day today. Hope you all have a good day.

Thanks everyone, really appreciate the support and understanding. It was good to have somewhere to offload when feeling so overwhelmed with symptoms last night.

I managed to sleep on and off, still not feeling great still but calmer and physically not as dreadful as last night when I’d obviously over done things so I’ll take that.

@MewithME I like that phrase ride the wave, it’s very apt and a good reminder that the chronic pain/ fatigue will pass.

I’m just planning to rest in the air b n b today and just enjoy the novelty of a different environment. My family will pop in to me here for a bit so I’ll get to see them at least.

Hope everyone who is struggling can have a calm and restful day, enjoying the garden, reading or whatever you’re watching/ listening to.

Hope everyone's doing ok today. Have had a rough day, completely fed up of struggling and feeling exhausted day after day. Working full time, house is a mess. Wondering wether to try and get a few days off to rest a bit

Sorry to hear that @Stressybetty . I've been really tired today, despite having a short nap.
Sometimes my 85 year old dad is more energetic than me!