What are you up to today if you have a chronic illness Thread 8.. plodding on gently...

[MewithME]

Linky to last thread 🧵 https://www.mumsnet.com/talk/_chat/5506529-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-7

Let's be good and use those last posts up first. Nice to be tidy here if not in my house! 😉

Kettle's always on @TodayIsatrickyone, no problem ☕

Slowly slowly catchee monkey 🐵 is definitely the best mindset for you at the moment. So glad you have your lovely DH to help you. 💐 You will get there from the details you have shared with us previously you are one strong lady 💪🏼

Welcome @danglethedingle! Love the image of you and DH sat fed and happy 😊

@danglethedingle there is nothing happier than an overfed labrador!

Just popping on to say hello and mark my place.

@bedfrog Im in Scotland and have been referred to the cfs clinic in Edinburgh. It is at Astley Ainslie Hospital. Could this be a possibility for you?

Thank you @Dozymoo42and yes, I love that show
@JewelleryCatnot yet! I have to watch on catchup as no tv licence

Hope your anxiety is better now @martha79 i always get my worse anxiety at night

Your dh sounds lovely @TodayIsatrickyonesometimes I have a little cry at how supportive and kind mine is. Almost like I don't deserve it and can't believe I've got him!! So silly. It's still early days for you but being stuck in bed sounds horrible. Hopefully you will keep on getting better little by little

Hello @danglethedinglenice to have you here!

@TheChicSnailI'm not sure honestly. My gp said there was nothing at all they could refer me to, and I can't easily get to Edinburgh and I'm not in their area. I have tried the pain service, counselling, physio, and all medications (it seems) so I'm not even sure what else they can offer me. I do hate feeling all on my own though. Maybe I will ask the gp about it, thank you

Oh I know- it’s a really lonely place to be at times, especially with it being a somewhat invisible illness. Im sorry there hasn’t been more useful support in place local to you.

(I haven’t accessed the service yet as I’m on wait list but my friend has and did find it helpful for support finding her baseline and building up, but she hadn’t had any other prior service involvement so I don’t know whether that would be a repeat of what you’ve had before.)

Its lovely you have a supportive partner though :)

@Dozymoo42 I’ve started telling people who don’t understand about PEM that when I go through it, it’s like a down bit on a rollercoaster lol and I’m waiting for the rollercoaster to come up again

@danglethedingle welxome to the thread. It’s a lovely community on MN

@bedfrog oh do you even have to have a tv license to watch live stuff on ITVX? I knew about bbc iPlayer but not ITVX or C4

Welcome @danglethedingle, nice to have you here.

Just woken up from sleeping for most of the afternoon too. Spotted this on Instagram earlier, I quite liked the explanations (and want to send it to all the people who've said "so you're just really tired?", but I won't) https://www.instagram.com/p/DXaSkIMAaEj/?img_index=4&igsh=Z2JncDVpd2I2cnNk

It would be so tempting to send it to some people.

Even though I moaned about it up thread somewhere. I do think it's really hard to understand. I don't understand it myself sometimes.

Pacing feels like a trap too. You only have so many available hours a day and when you have to completely rest due to PEM you lose those hours completely. There is no catching up like a healthy person. This is how I have got into the mess I am in right now.

In the beginning pacing was ok but now I have pacing debt. If that makes sense?

As an occupational therapist, if I ever worked in the role again and give pacing advice I will be so much more aware of how difficult it is in practice.

So glad most of you have supportive partners. That makes all the difference.

Hi 👋 by the way. Come straight in with an essay!

Today has been slow housework, dog walk and managed to make dinner. Now time to rest and need to tackle the washing up but it can wait.

@Tiredandwired2 pacing debt absolutely makes sense - I don't think anyone can ever do it perfectly, not least because by the time we know we should be doing it, we already have debt from not doing it.

I've just been very touched by friends who live a couple of hours away nudging me to invite them over for a visit again (they came one day over the Easter holidays). I was feeling guilty about not being able to alternate doing the journey as we used to but have been told to stop being silly and they're coming in half term week at the end of May ☺️

Just marking my place, I’m struggling to keep up, but still here.

@bedfrog my advice is do your own research. My GP knows nothing. I found my own service and pushed for a referral. Now I've had zero support but I got a valuable consultant diagnosis which has been hugely helpful.

Just dip in when you're able. I don't always keep up either. I worry I sound self centered sometimes but it's sometimes because it's hard to process what's going on when I'm having PEM and easier to say where I am. 🙈

Hope you are ok as you can be.

Thank you all for the lovely welcome.

Managed three hours at the allotment. I nearly blacked out so many times. Dh had to keep helping me to a chair. Between us we got all the beds cleared and planted lots of stuff. Waiting to hear from community cardiology about whether they are diagnosing me with pots. If they aren’t they may need to work out why I’m blacking out this much.

I want to find a way of honouring my mil at the allotment. It was her happy place and she looked after it beautifully.

Morning all

@FurForksSake that is so stressful. I hope cardiology is not too long a wait. My pots being treated has made the biggest difference to my health after 5 years untreated. If it is pots I hope you have the same stabilisation from treatment.

Very grey here today. Trying to consider what to do with the kids today. Maybe garden centre or a gluten free cafe. Can only manage a couple of hours out but it will be lovely. Wherever I go, I need to be able to sit a lot.

Hope everyone has a good bank holiday Monday.

Morning all!

Sorry things are bad @FurForksSake hope you get some answers.

Garden centre always good @Tiredandwired2 although everything is so tempting this time of year!

I had terrible tinnitus yesterday but thank god it's died down a bit. I'm down to my normal background hiss today whereas yesterday it was roaring.

I have been resting my eyes by listening to audiobooks but using headphones has set me off. I'm too considerate for my own good! I've not wanted to disturb DH while he's reading in the evening, so I've been plugged in for hours on end. I really should have realised my ears would object...I even get tinnitus after being near the kitchen extractor fan for too long. Also got it from trying NHS hearing aids briefly some years ago so I have never used them. ( never had any follow up appt, which apparently would have helped, I was just sent on my way with some spare batteries)

However when I had an audiology appointment recently the chap there said the more modern aids can be adjusted to help. So fancy hearing aids are on my wish list now!

I'm going to take myself off to bed early to listen to my book tonight 😇

Have a relaxed day all!

Another restful day planned today. Have already washed my hair, so am back in bed with a coffee ☕

Will rest here and listen to some podcasts this morning, then I have some seedlings to pot on this afternoon, when hopefully the weather will have brightened up 🌱

Have a peaceful day all 💕

I so agree about time missed to pacing @Tiredandwired2 and how frustrating it can be.

I miss evenings so much - meeting friends in the pub, meals out with DH, yoga classes .... Instead I'm at home, usually asleep. Feels like I've lost a third of my day 😞

I saw something about there being services now in Forth valley having a new service, can't remember where though.

Having a quiet day here so far, did a sleep study last night which was a b9t of a faff

Hope everyone has a good BH Monday

@TeaAndStrumpets I hardly ever buy anything. Just love to look and appreciate the beauty of it all. They have a lovely cafe too which looks out over it all.

Sounds like you are having a tough time. Early to bed with audiobook sounds like a good plan and something to look forward to.

@Swanhilde Hugs to you. It is so hard feeling cut off from those things. I think one silver lining though is how much joy we find in everyday things. I love reading your posts about what your up to. They sound dreamy.

@martha79 there is definitely the pacing debt from not pacing enough.

I meant something a bit different which I don't think I explained well. I meant that when I pace and rest well I then get 'debt' from the things I haven't done because I haven't had time/energy/capacity to do it.

For example, garden overgrown, home maintenance build up, not being able to support my kids the way I would like etc.

I do think it's different if you have a village to support you with those things though. Does anyone else feel this way? I never see this talked about

Wading my way through this living nightmare…

I completely get what you mean @Tiredandwired2 . My DH is wonderful and supportive and I wouldn't be able to do anywhere near the amount of things I do without him.

I am also thankful (not really the right word) that my children are grown up and self-sufficient. I can't imagine having this illness and young children, it would have been impossible.

I am in awe of those of you who are single parents and trying to cope with chronic conditions 💐