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....

Welcome @Dozymoo42 it's shocking to feel your body has let you down. The times I've said "but I only........" about some perfectly normal activity like shopping or socialising for an hour that's flattened me. It's sneaky because there is a time lag where you think you've got away with it then you discover you haven't.

There's a lot online about Spoon Theory, which is simple to understand and helpful. When I was at my very worst during the Covid years I relied very heavily on a pulse oximeter to keep within a safe zone of activity.

Hope you can drop in and chat, it's good to find people who get it.

@Ihad2Strokes sorry you can't sleep. I know worrying about sleep makes it not happen! Would a magnesium spray or bath help rather than tablets? If I can't sleep I just get up for an hour and have a herb tea. By then I've usually got a bit cold so getting back into a warm bed sends me right off. Hopefully others have some better tips!

Thank you for the welcome guys, I’m going to give myself time and hopefully figure what works for me and what doesn’t.

@Ihad2Strokes sorry to hear you a struggling to sleep i hope it’s gets better for you.

Hello all, gosh thread 6 already! Welcome welcome welcome to all our new people, I love this thread.

Yesterday I had a retinal migraine and managed a nap to get rid of most of it, DH had booked a restaurant for us and ds to go to for valentine's, I was so exhausted but I felt I couldn't let them down, we very rarely go out for meals. The food was lovely but I'm certainly paying for it all now.

I hope everyone manages a peaceful Sunday. It was dry and bright here the last two days but today the rain is back with a vengeance.

Morning all!

Very miserable weather here, grey with a few flakes of snow. I have put on my warmest and most disreputable cardigan because comfort trumps fashion!

It's been nice to see a few new faces.

More house clearing/tidying/packing today. It seems never ending but it needs to be done. DH is a bit deaf at the moment, so I am bellowing a lot, or miming!

@Realisation14 I get those too, stress related but I'm used to them now. Glad you had a nice evening!

@TeaAndStrumpets can't beat a good cardi. I was eyeing one up online yesterday but it's mohair and it'll be a faff to wash so not bothering!

@Dozymoo42 (love the name) it's a big thing to take in. Well done on an early diagnosis. I think that's essential to getting to grips with it. I spent a while after diagnosis feeling a weird jumble of vindication and anxiety I think. As time goes on, I've felt more relaxed about it and I suppose, I've learned to trust myself in managing it as best I can.

I bought a load of books and read loads of stuff and was in a few Facebook groups, but I've dialled that all back now. I have found me association a solid resource to dip in and out.

I have the visible armband which I like because learning to pace is really hard and this makes it much easier.

I think we kind of just need to have some time to adapt. Lots of people with MEcfs are the kind of push through, high achieving people so it's hard to stop.

Biggest thing to practically help me is my blue badge and it took me two years to manage to get one. I was declined on the first attempt.

Who did your diagnosis? Was it a consultant? My council wouldn't accept a GP diagnosis for the badge so it was hard for me to get the proof. I found my own consultant and pushed for a referral from GP. I later found out I was very lucky. One of only fifty from my county who were 'farmed out' to another health authority for diagnosis because we have no consultant in ours. Last I heard was a letter saying they couldn't recruit anyone! Bizarre.

Thanks for the new thread @MewithME 😍

Apart from a quick trip to the supermarket, I slept most of the day yesterday and for 12 hours last night. Starting to feel vaguely human this morning but as the rain is pouring I will stay cozy in bed again. I have my knitting with me if I need something to do 🛏️☕

Have a peaceful day all 💕

Morning all. Dry & cold here, a bit grey. Will be atrempting my lasagne for dinner. Haven't been strong enough to make it for a while. But dh & ds here to put it in & out the oven so I should be fine.
I actually got a decent chunk of sleep last night. First time for over a week 🥳. I'm on steroids which can cause insomnia. Add in dh snoring like an asthmatic warthog it's not a great combination. He does have his good points though.
In hospital for the day tomorrow. 6.5 hour infusion. Will be sorting snacks & a book later.

A bit of background.
4 years ago, totally out of the blue, I developed an auto immune disease. It caused my immune system to attack my nervous system & severely affected my mobility & strength. It's been a battle, a relapse early last year after viruses overwhelmed my system. It's taken all year but I'm so much better now. I can walk around the house again with just a walking stick. Less clunky than the walking frame. Hoping I will be able to drive again at some point in the near future.

Morning all, welcome @Dozymoo42 another long timer with ME & Fibro here too. Just take your time to digest the diagnosis. The main thing for me was learning to listen to my body and not push beyond my energy envelope. Not as simple as it sounds but pacing and regular rest are key to helping manage symptoms.

Rain, rain, and more rain here so on the sofa with a snoozing dog making sure I don’t move. Slept well apart from DD coming back at silly o clock as her friend persuaded her to go out last night. She has work today too but she’ll learn that’s not the best idea!
Im quite enjoying the empty house today. Trying to find something light hearted to watch on TV but not finding much that’s capturing my interest really. DH back tonight, he’ll be shattered for a few days but hopefully able to help out a bit.

A bit grey and miserable where I am today, just trying to convince myself to move and get ready for my brothers birthday meal after that not much planned so rest it is!
@MewithME it was a consultant that diagnosed me I will look into the blue badge thank you and the ME association.
@TodayIsatrickyone I feel it’s going to be a lot of trial and error to figure things such as my baseline as I think I have been like this for a while but always pushed through so it’s really going to be a case of stripping everything back for a while.
Anyway better get moving or I never will hope everyone has a nice calm restful day!

Your family will be pleased to have your lasagne! So good to have some kitchen help. My DH has been doing all the cooking since I had a major MEcfs relapse a few years ago. He is not a brave cook but can do plain food. He does get flustered though so I have to just leave him to it and not make helpful suggestions!

Your illness sounds horribly debilitating. I hope the treatment is successful.

@TeaAndStrumpets Thank you. Can never be cured but strategic steroids & infusions should help keep it managable.

DH does most of the cooking now. One good consequence for me as I don't particularly enjoy it. Every cloud . . . 😁.

Another with ME / CFS here (amongst other things)

Woke up earlier but then went back to sleep and have only just woken up again.

Looking grey out after a break yesterday. I have a new weird nutritional porridge thing to try so might have that for lunch. Exciting stuff eh!

Have a peaceful day everyone

And hoovering!!

Not usually hoovering tbh.

Hello, can I also come and join you? I have a recent Long Covid diagnosis but my GP thinks that may be the tipping point of something that's been going on for longer. I'm hypermobile and a lot of the dysautonomia symptoms I'm experiencing now, I've had (usually in milder forms) for quite some time, but often put down to anxiety in the past. Have spent a couple of months just trying to rest and get everything to settle down, and am now attempting to very gradually test adding activities in but with mixed success.

I was definitely the too busy, pushing too hard type - the middle of last year I was running a lot and constantly trying to get faster and go further; working two jobs; lots of activities outside of work - and I am finding it really hard to let go of that mindset. Also very difficult explaining it to people - had to turn down a cinema trip last week which my friend thought would be a gentle thing to do as it's "just sitting in a room for a few hours".

Anyway, having tried a small experimental train trip a couple of days ago (very small - just the next station which is five minutes away, and back) and then getting a bit overexcited by the sunshine yesterday and doing too much, I am spending today mostly in bed. Watching Bridgerton which I resisted for ages, but am finding about the right level of 'drama' (nervous system cannot deal with anything too stressful!).

Well tbf switching on the roomba mostly!

@martha79 welcome!

One of the worst things about ME/cfs and Long Covid is they just suck the fun out of life. Going to the cinema is far too much stimulus! A quiet drink with friends is too exciting because of the chatting! Not to mention the stress of travelling....you have done really well to venture out on the train.

A bit of daft TV is great medicine!

Back to rain here and weariness. Am.doing roast duck for lunch/dinner( depending what time its ready) but really just want to go back to bed.

Lasagne came out well. Everyone cleared their plates so dogs will be disappointed.

Afternoon all and welcome @martha79 @Ihad2Strokes
Have done nothing this weekend except sleep.
Still don't feel calm or rested.
Have booked 2nd attempt at hairdressers for Thurs and will dye my hair after that.
Still getting hassle in directly from neighbour.
Got few months till end of fixed term and nothing legal till then.
Better for us to try and stay as long as we can for MIL health.

Can I join please?
Ongoing physical issues due to a missed hip fracture that has now been discovered. And MH issues that have been going on for years!
Managed to get out for a walk with DP yesterday (sunshine), & today (mizzly) with my crutches.
Back to the physio next month so fingers crossed for some progress.
Struggling with eating due to ongoing GI issues, which is a shame as I love cooking (& eating!). Limited to soup, smoothies & yoghurt atm, which is pretty boring!

Well done for getting outside! The sun seems to have disappeared for a while but it was nice while it lasted.

How annoying that your hip fracture was missed. I hope the physio is able to help. It must be very difficult to do much cooking balanced on stick or crutches!

You're so right. I live alone so a lot of my socialising did revolve around going out - singing in a choir, playing in an orchestra, cinema with friends, dinner out.. in the last couple of years I'd been going to some afternoon clubbing events and dancing lots. I've always had a very noticeable social battery though - often the first to leave an event. But now it feels almost non-existent. I'm only seeing the few friends who don't mind visits being a cuppa at home or a slow walk round a park.

My single achievement today has been to get up and put a tray of chicken drumsticks in the oven as I realised they were on their use-by date. At least that was this evening's meal sorted and plenty for salads etc for the next couple of days.