What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

@MewithME in a previous house I slept in an attic bedroom, and the bedroom kettle and mini fridge were an excellent addition.

I've been pondering some things I was talking about in counselling and have decided to stop tracking everything at least for a few days. Took my smart watch off before I fell asleep last night, and I've just taken Visible off my phone (the free version - I did find this useful to spot patterns but I feel like I know what my triggers are now and I'm obsessing a bit over measuring everything). Will see how it goes.

I know what you mean about the tracking, I feel similar. It's a tricky balance isn't it at times.

Had a couple of quiet days following elderly MIL's visit Saturday, that seems to wipe me out! she likes to go out shopping, then for coffee and to the local grocery and it takes all afternoon. I have cut it down from twice a week to one though so that is helpful.

Went with DH for a walk and to the pub yesterday and been in bed most of today.

it is hard that 'payback' thing isn't it. I do find I react badly to stress, and noticed the ME clinic listed 'stress' as the first thing they linked with fatigue. DH was telling me all his work stress and I understand sometimes they need to share stuff but needed a bit of a break after.

Finding it quite muggy recently, will be nice for the weather to freshen up a bit really. About a week ago I was out in the garden and it was lovely.

Hoping for a peaceful evening for us all

@TeaAndStrumpets ooooo intrigued by the results.

This scale is the same one that I use each week, I had slightly less clothes on this week but not a whole 1kg worth 😂.

I’m on annual leave this week (working zero days instead of 2!) and yesterday was my second visit from my gardener. He did all the Big Jobs that I can’t do anymore and I then planted out the courgettes and squashes that have been waiting in my green house. It’s taken me so long to ask for help and it’s such a relief now I’ve finally done it.

Today I’ll be at breastfeeding group then napping.

Morning all.
Dh had to leave early for work so I'm enjoying a coffee in bed.
Easy morning planned then DD2 & DGD visiting this afternoon. Costco mini carrot cakes await their arrival. DGD will love me!

I tried tracking for a while but I felt like it made me feel even less able. Almost like it made me focus on what I can’t do, which is Glass Half Empty thinking, you know?

The turning point for me was therapy for cPTSD. My EDS had been slowly reducing my energy/function, but I’d been adjusting as I went along. Six years ago I had sepsis, and I’ve never fully recovered. I now have post sepsis syndrome, like long covid, but from sepsis, and it’s left me savagely exhausted and increased the severity of all my EDS issues like pain and Gastroparesis.

Tracking made me feel like I shouldn’t/couldn’t do anything, so I deleted Visible and just started scheduling in a daily nap instead.

Wonderful to have some help! Our garden has gradually gone back to nature but it is a haven for wildlife (that's my excuse!) We have a lot of high hedges so get some chaps in every year and it's amazing to see them whizz through the foliage. The best thing is they gather and take the trimmings away. That was always my job 😞

I met some of my oldest friends at NCT groups!

I've done this as well (naps instead of tracking), but the naps seem to then stop me sleeping well at night. Even though I'm dead tired at 2pm and nap like a log, even though I wake up from my nap and could sleep 8 more hours. It's so frustrating, I think I'm nocturnal!

Hi. Yesterday my GP told me that she thinks that I have cfs. It's something I don't know much about but I read the posts on this thread, and the previous thread, and think that it is something that many here will have experience of living with. I'm sort of shocked by what she said, but then also not shocked because I've been feeling like I live life on my knees for months and months. I think my overwhelming feeling is one of sadness because my old life, where I was quite energetic seems to have gone and I don't know if it will come back again.

I can see that, I think I might have been tending that way. I've also uninstalled Duolingo as it was feeling like another thing I had to do when I didn't necessarily feel like using brain energy, and reduced the list on my 'productivity/ self care' app to just reminding me to take all my medication/ supplements - I had built up a huge list of things I 'should do'. Switched my alarm off as well because I always wake up before it and it just encourages me to doze then get woken up again with a jolt (and I have flexible hours at work so as long as I'm logged on by 9.30 it's fine).

I do think therapy is already helping - it's becoming really obvious why my body/ nervous system wouldn't feel safe and a big shock like being really ill with covid would have this impact.

Not the best sleep last night, lots of busy dreams and I woke up at one point with incredibly painful hips and thighs, honestly felt like I wouldn't be able to walk this morning. But it seems to have settled down. Have a few meetings at work this morning then a quiet afternoon. Then I'm off until Monday.

Sorry to hear about your diagnosis @TwilightFox - it is quite a thing to get your head round.

It sounds as if you have a very nice day planned! It's been a few weeks since I saw my DGD and there has been such an explosion of language I am amazed every time. Almost 18 months now. Cliche I know but it really is a lovely age. I've got three huge grandsons too and they are very helpful for moving heavy furniture and helping sort out my phone settings 😃

Sorry about your diagnosis. It's a rotten illness... think living life on your knees expresses it well.
However it is unpredictable and different for everyone. Learning how to manage it is very important, but there's a lot of trial and error. Plenty of support here!

@martha79 I get a lot of stiff muscles and resting just moves the stiffness around my body! Yes busy dreams too, I'm very sociable in my dreams and seem to talk non stop. My dream friends must think I'm a terrible chatterbox!

@TwilightFox Sorry to hear that. You can see this is a lovely place to come & chill. They're a lovely welcoming bunch.

@TeaAndStrumpets Dgd is just 18 months too. Seems to do something new each time I see her.

@CoffeeBeansGalore I know! Her parents are exhausted but enjoying every minute. Daddy is training her to catch rolling balls as he hopes she can play cricket for Yorkshire one day 😃

Pull up a pew @TwilightFox and @Swanhilde always has the kettle on if you want a drink

It must be a shock. The ME Association is a good starting point I’ve found and you can always ask questions here too if you’re not sure about anything

Hey @TwilightFox it is a lot to get your head around. I was diagnosed by the GP in 2021 and then by a consultant in 2023.

The GP like yours said cfs. Lots of people with it prefer ME or MEcfs.

I think it is a grieving process. I made a decision quite early in that I wasn't going to spend precious energy chasing treatments. I found out about things like LDN and some massage therapies and then thought it all seemed to carry risk and take energy. It felt better for me to accept it and try and tune in to how I am.

Largely speaking I've done well. I have kept my job (which terrified me as a single mum with a mortgage) and I have objectively not got worse.

Anyway, we're here for you. The biggest help I've had has come from online friends.

Have you got an MEcfs service in your area ? The ME association lists them I think. My GP told me there was no consultant and after two years of digging and pestering, I finally got a consultant diagnosis. I've not had any other NHS help tbh but it definitely varies.

Fallen behind on the thread again having some “womens health issues” causing me pain. Hey ho.

Argh sorry to hear that @ValleyClouds . What are you up to today? Hope you can rest up a bit.

@MewithME hoping to go to a walk in appointment it’s that bad I’m afraid. It’s not far from the house though

@TwilightFox elcome to the group everyone wishes they weren't qualified to join! So sorry about diagnosis. It's a croc and a huge learning curve, but lots of support here.

Aw, sorry. Hope they can help you.

Afternoon all, catching up on thread which seems to have whizzed by! Bit brain foggy to reply to all but hoping those that need to rest can do so.

Welcome @TwilightFox
@ValleyClouds Hope you can get seen today and get some help soon.

Busy morning here with another appointment. Just a follow up at GP which I wish I’d changed to a telephone appointment tbh as I’m shattered but did manage to pop in and see my mum for a quick visit whilst out. She lives just a few minutes from the beach so DH drove the car so I could look at the sea for 5 mins! Always instantly calms me, I really should try and do it more often! No osteopath this week so that’s my appointments done at least.
Rest time now 😊

I also have ME / CFS which started from sepsis. Sounds like a good plan with the nap. I am trying to do that as well, a nap after lunch problem is it goes on too long, then struggle to sleep at night.

I envy you being able to look at the sea. So relaxing. Sounds like you've had enough appointments to last you awhile!

Nothing much going on for me. DD1 came over with DGS who has just finished his gcses. He's had some sort of physical collapse with palpitations etc. Nothing found by GP but I'm honestly wondering if it's stress. He's done really well to sit his exams after being out of school for a few years, but it has been very intense.

DD1 came to borrow my scales but there was not a battery to be found, so she's taken them home with her. She's trying to lose weight and has bought loads of Soreen Sticky Toffee fruit loaf because apparently there are hardly any calories in it 😂😂 Time will tell!