Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Sitting in bed with my coffee as usual, catching up on posts. It looks like a lovely sunny day out here but it's meant to be cold as well.

DH is away with work today and I have told MIL I'm not feeling great and as he is not here we should leave her visit this week. After last week I need a break.

Might try going for a walk later. Visible says 4 today so that's not bad. I'm looking forward to it being a bit warmer so can sit out in the garden.

Hoping for a good day for all

Morning all. @Orangesandlemons77 I'm also in bed with my coffee. I have a splitting headache. I've been really unwell for the last couple of days. I know I've been doing too much with work. It's just been relentless. Sometimes it's one day of over exertion and then because I can't rest enough, it can take weeks to get back to baseline.

Anyway I was in bed by 4.30 pm yesterday and have barely moved since. I am still feeling emotional. It's coming up to the anniversary of Dad's death which doesn't help. My mum is very highly strung and will be in a heightened state for a while, so phone call with her later will be hard.

Anyway, I have shopping coming between 11-12 so I'll have another half hour rest then get dressed. I've got a banging headache too.

I'm just trying to ignore the state of my house. I know I feel bad about it when I'm so low on energy I get worried about looking after myself and the future.

Wonderful to see the sunshine though.

It will be a telly or podcast day. I started watching North and South on channel 4 player. They have loads of stuff now because they everything from U.

@Orangesandlemons77 I got a 2 today. HRV is down at 40. It definitely matches how I feel.

@Orangesandlemons77 it is rather chilly, but lovely to see the sunshine. It sounds like you are better off with no MIL today!

@MewithME sorry you have worn yourself out. Don't worry about the housework for a while, your health takes priority. Once you are feeling better you can do a bit, but not all at once. You could sort the laundry now and bag it, and just do a load every so often when you are up to it. I know it's tempting to do it all at once but you'll feel worse if you do.

Morning all, a 4 here on visible for the second day which I’m thrilled about having got 1 or 2 earlier this week and not above a 3 in February. I shall try not to overdo it but we do need to take the dog out as she’s been going stir crazy since her spay and no walks were allowed. So I’ll take my stool or go where I can sit in a bench.

@martha79 glad all the bloods were okay

@TeaAndStrumpets I can understand the going over it all in your head. It’s always difficult needing treatment for other conditions on top of ME with the worry of PEM and how it may affect other symptoms. Sometimes I find if I write notes and questions for upcoming appointments it can get it out of my system a bit. Plus helps with brain fog in the appointment! I’m glad you’re seeing someone privately to cut out travel at least and hopefully it won’t be too long to wait.

@Orangesandlemons77 well done on putting your MIL off today and giving yourself a break.

@MewithME sorry things feel difficult today but it sounds like your body is definitely screaming rest at you. I find a headache is generally a warning sign for me to slow down. I get stressed about my house too at times and it must feel doubly stressful when it’s all on you. I second Tea & Strumpets though in putting it on the back burner for a while and just do the absolute minimum bit by bit when you’re able. Anniversaries are hard emotionally and we know how ME reacts to any stress so be kind to yourself today.

Thanks @TodayIsatrickyone writing it down is a good idea. I am coming back up from my anxiery spiral and thought if there is a problem with my eyes he's the very person to tell me!

Thanks @TodayIsatrickyone @TeaAndStrumpets oh I shall ignore housework.. apart from school uniform laundry (one more year to go!) it's more the big things that eat at me when I'm feeling crappy and in the house staring at it. Undecorated hallway, ancient horrible carpet, ancient horrible laminate, some iffy sockets (probably needs rewiring) , new flat roof needed...I could go on (and on) !

I've managed to get the shopping out away from delivery and now plopped on sofa with a vanilla coffee (my favourite). I also got some Maltesers as a mother's day treat to myself!

I will have a nap later and be careful.

Back to the hospital with DH today. Yesterday an NHS admin error meant he'd been left off the list for planned procedure. Very annoying.
Many apologies later they've fitted him in this afternoon.

Grrr how annoying! Fingers crossed all goes ahead.

Beautiful day here ☀️

We went to the garden centre this morning for coffee and a mother's day present for my mum. Ended up buying both of us pretty patio tables 🌻🍓❤️

Came home and DH mowed the back lawn and then did some digging for me while I potttered and pruned. Felt good to be out in the sunshine. I'm still sitting in the garden now with a ginger tea ☕

I've half started a crumble for tomorrow's lunch - apple and blackberry - which I need to make the topping for and then it's nice and easy baked potatoes for tea. DH will sort them 🥔🥔

Have a peaceful afternoon all 💕

Lovely sunny day here too.
Not posted for a bit, my anxiety has been really bad and it was easier not to.
Have kept up reading all your posts.

In case others with ME / CFS are interested, I found this PIP assessors guide online (via ME association) It mentions a Care and support plan, but I have not been given that. Have others? Thanks

https://meassociation.org.uk/wp-content/uploads/2025/05/DB-PIP-CPD-CC-046-V2-Final-ME-CFS-CPD-Workbook-redacted.pdf

Something else I wondered about with PIP could be to send in some of the info from Visible to show how many flare ups / good or bad days, wonder if that might be an idea.

Sorry you are feeling anxious, hope things improve for you soon. X

I hear you @MewithME We have a few areas that really need things doing but never have spare energy to much beyond the basics. I also have an ancient dining room carpet that depresses me daily but it’s not straightforward as there’s a built in dresser that we probably should knock out but that would mean redecorating possibly re plastering as not sure what’s behind it. So can’t do one job without leading to another. Every year we say we will tackle that room. Every year we don’t have the energy to deal with it anf we just put rugs down instead! We still have no oven as I was too unwell the day the electrician was booked in. Sometimes I get overwhelmed but remember we’re doing the best we can.

👋 @Stressybetty Hope things ease soon

@FuzzyPuffling fingers crossed today goes better at the hospital for DH

@Swanhilde sounds like a lovely morning

That looks an interesting link @Orangesandlemons77 thanks, will save and read properly later. I don’t have a care plan. I haven’t sent the Visible data personally but I had thought recently it may have been useful evidence.

Sorry but a what now? 🤣 My GP doesn't know who I am unless I bug her. Nobody checks on me. I've had zero support apart from a leaflet beyond diagnosis. GP also gets it mixed up with fibromyalgia all the time.

She'll do tests for other stuff to make sure we don't just assume everything is the ME. She is good like that.but care for my actual illness is zero.

Nah, I'm defo on my own with it. My support is here and via visible and my FB group.

So good to hear from you. Was going to give you an @ soon to see if you are ok! Sorry it's been hard. X

Hi everyone.

Lovely day here too. Been in most of the day but just sat in the garden for a bit and popped to the shop. Made no knead pizza this morning. Now just resting and browsing online and then pizza, gladiators and BGT tonight.

@MewithME Sometimes your life sounds scarily similar to mine! I get the overwhelm with the big house tasks. For me its because they are more like project tasks that need multiple steps, lots of communication and vetting the right person to do it and the logistics of moving things to get the job done. My flat roof needs repairing too. The house failings have been the cause of my near mental health breakdowns. last year I had the roof, leak from the shower into kitchen, flying ants coming into the house, slugs. Non stop. I dream of selling and living in rented where i am not responsible but I know i am lucky to own a house.

@Orangesandlemons77 I have saved that document to look at. It seems to be aimed at healthcare professionals doing the assessments so I am interested to know what they put in there.

He's in recovery now. Just waiting til I can take him home.

💐hope Mrfuzzy is in good spirits.

@Tiredandwired2 Im totally nodding along with your description of house projects and how it impacts on your mental health. You're spot on, it’s the multiple steps involved plus finding the right person for the job. We’ve had the odd dodgy tradesman over the years and that’s stress I can’t face again.
I feel incredibly grateful to have the security of our own home but It’s just after 20 years of ill health for both of us whilst bringing up children, it’s looking quite neglected in parts and I do feel embarrassed about it. Plus I think we’re home much more than most and it’s a special kind of hell having to constantly see jobs you can do nothing about.
Final straw this week and I cried over damp patches on the lounge carpet which I initially thought was mud from dogs/ DH forgetting to remove his shoes but more have appeared since the flooding and are not drying out. We’ll simply have to deal with it. Friends son is coming soon to re wire the cooker ( had to be disconnected in flood) so DH wants to look at it with his assistance as he’s calm, sensible and understanding of our situation.

Great news! Hope you can get home very soon

Hi everyone, I'm finding it hard to keep up with the thread recently I'm sorry!

@FuzzyPuffling I hope your husband is okay after his procedure.

I've seen some adverts for this visible thing I must look into it, my Fitbit app does a similar thing from my watch where it determines how active I can be that day based on how much sleep I've had and my HRV and breathing rates? But I'm never sure how accurate it really is.

Saturday is my stay at home day so I've watched a documentary and done some reading, deep cleaned my bedroom as it really needed it and it's the room I spend most of my time in! Now about to hop into a bath with magnesium salts.

I hope everyone has a manageable and decent weekend.

Quick check in hope everyone is ok! Lovely and sunny here very excited to have pegged out my first lot of washing for the year ☺️

done a bit of pottering today as my family are all out and it’s made me feel good, been a bit down recently with not having enough energy to do basic cleaning and then having the fall yesterday but doing that bit today even with being uncomfortable from the fall has given me a little hope that I can do more going forward and learn to manage me energy properly. Off to watch footy with a brew now I hope everyone has a good day whatever they are doing x