What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

waves 👋
Been MIA
( trigger warning -hospital worst 2 weeks of my life)

cant type much, too tiring
Unwell at home with migraine for 5 days then speech went
DH called ambulance and ended up hospital for a week.
Scan shows bleed on the brain ( horrendous pain, photophobia)
also had a second stroke on top
Cant treat one without impacting the other. Had to wait- keep scanning. Talk of surgery ( not needed now) but Incredibly scary painful time.

Speech went, weakness one side, very scary.
Hopspital hell on earth with severe ME and complete lack of understanding. I keep crying about that more than the stroke.

Home now, start to recover. Slowly slowly but support from stroke team at home.
speech better but currently bed bound in dark room but walking to loo now so hopeful will build. On slow release morphine as pain high.
Will be back soon as I’m sure I’ll need support processing this. I’m only 58.

love to all
cant read posts but hope Tea & Strumpets is recovering and everyone else is hanging in there.

P.S wont be able to post much as need to avoid screens. Some blurry eye issues too but hard to tell in dark glasses. Have got curtain a crack open today so progress 👍

DH & DD are doing an incredible job looking after me and little dog is guarding my bed.
Bye for now

Sounds terrifying @TodayIsatrickyone !
Glad you're home now - take it easy 💐

@TodayIsatrickyone so sorry to hear about what you’ve been through. Just rest and we’ll be here when you need 💐

So sorry @TodayIsatrickyone - sending you lots of love.

@TodayIsatrickyone oh you poor love. Sending lots of good wishes to see some improvement soon. Rest rest rest. Xx

@TodayIsatrickyone that sounds like two weeks of sheer hell. Thank goodness you are being well cared for. Hope you can see a recovery on the horizon.

💐💐

You are always so kind and thoughtful with everyone on this thread. Get well soon! 💕💕 xxx

Oh @TodayIsatrickyone I am so sorry to hear what you have been going through! Glad you are being looked after well by family and the doggo!

sending lots of love and hope for you 💐 everyone will be here when you are ready. This is what I love about this thread the ability to dip in and out and it’s like you’ve never been away x

Oh gosh @TodayIsatrickyone that is a scary two weeks. I hope you have a speedy recovery 💐

Oh bloody hell @TodayIsatrickyone . So sorry. Take lots of care & hope you are up & at it soon x

@TodayIsatrickyone so much love to you. One moment at a time.

Gorgeous morning here, although we are forecast rain later. Off to the allotment to make the most of the sunshine ☀️💚🌱

Hope you enjoy the allotment @Swanhilde!

I had a horrible sleep, shaky and twitchy, so not feeling great today. Had breakfast and went back to bed for a couple of hours, and I'm just back up awaiting a grocery delivery, with no other plans for the day.

Sort of glad it's forecast to rain later as it saves me watering the plants.

So sorry to hear about what you've been going through. Glad you're home now and getting good support from family

First cornflower of the year to brighten your day ☀️💚💐

Beautiful @Swanhilde . My garden is a state. Still trying to get some reliable help.

I'm feeling quite wobbly today. I've had a dental check up and meeting.. just had a lunchtime lie down and will do another hour or so and then rest..

I'm feeling like I'm not managing things for DS at the moment and the guilt is not good..his friend is coming for lunch on Sunday but he wants to go to the cinema too. Is love to but I'm not sure I'm up to it. I've told him we'll see.

How beautiful 🥰

Could they perhaps have a cinema day at home with microwave popcorn perhaps MewithME? Just having a mate round sounds fun

I think about when we were young we never went out for meals or to the cinema. But children these days expect much more I think!

been for an eye test and need specs for the first time. I haven't chosen any yet. I do get painful eyes and maybe it has been eye strain instead of ME. Who knows.

Then spend over half an hour in the pharmacy while they rummaged around in boxes fill of prescriptions. All seemed a bit haphazard. Got it in the end and a reduced price prawn sandwich in the co-op so that was good.

Morning all - slow and restful day planned here. Probably did a bit too much in my own garden yesterday afternoon so all I'm going to do today is sow some runner beans in toilet rolls 🌱

Weather is a bit duller today with a downpour forecast later ⛅🌧️

Currently in bed with a coffee after a quick, no hair wash shower. DH is cooking a curry for tea 😋

Have a peaceful day all 💕

@Orangesandlemons77 they will be gaming. They're no bother. She's the most lovely kid.

I've managed a bath this morning. Feeling very rough today. Had drama with next door neighbour couple days ago...long story...but anyway, it's had a knock on effect as I thought it would. It's all very sad. Elderly couple. She's been in hospital for weeks and they're bringing her home to die now.

Lots of activity this weekend as they're preparing for her. Hospital bed and stuff going in and out.

It's raking up a load of stuff from when my Dad died and I'm finding it really hard.

Anyway having a few mins sit in the garden now I've put shopping delivery away and a wash on.

House is gross. Feeling like a crap parent and frustrated and a bit sad about life today. But that's the fatigue talking I think.

30 posts to go folks.... I will get the next one up soon 😘

Been up and fed/toileted dogs at 9, back to bed with cuppa and dragged myself into shower and washed hair. Could sleep all day at the moment as having balance issues with my ears-it's awful. Getting up soon to walk the doggos-am frustrated with myself that I'm not up yet, but I can't rush, and will catch up with myself later. Lovely day here in the north east. Happy bank holiday everyone ☕️

Had to go for a blood test this morning as part of doing this sleep study- I was referred for this ages ago by the lady doing my ME diagnosis but it has taken months to come through.

It was a drive away so DH came with me, now back home. Have the actual sleep study thing to do and hoping I do it OK.

Might try doing it tonight. First have MIL coming for her weekly visit.

Hoping for a good weekend for all

Having a bit of a painful day today so won’t be venturing far from the couch, arms achey and like lead hands swollen and sore 😢feel like my body is inflamed today. Hoping resting does the trick and feel better tomorrow.

have a peaceful day everyone .

Happy bank holiday everyone. I must say that I can’t wait for some rain, this sunshine has been nice but a bit too warm for me so I can’t wait for it to be a bit cooler

It’s interesting what @Dozymoo42 says. Occasionally I’ve found that all my joints or muscles or both feel so heavy like weights on them when I’m walking around the house. Is that yet another thing about CFS?