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! 😉

Thanks for the new thread 🙂

Thank you for the new thread @MewithME gosh the last one went fast!

I managed to cycle Thursday and I was so pleased! I’m paying for it now but currently typing from an Epsom salts bath 🤩 I did 2.5 hours albeit a good hour was at the cafe!!

I had said I’d go to allotment to help husband but tried my first sleeping tablet lastnight and felt a bit off this morning but did get 6 hours sleep ! He’d gone by time I surfaced so I’ve been doing my usual short bursts of pottering about - sorted some paperwork , organised my May medicine box , put some peas into drainpipe to then go to allotment when ready and when husband returned made him a bacon buttie and had one too as it would be rude not to. Now we are watching the match on tv , well one of us is and the other is debating a little nap or potting on some tomatoes and cucumbers

Saying hi 👋
Marking place
Back when more able

Checking in 🫡

@bedfrog its absolutely rubbish there are no ME services in the whole of Scotland but I did read somewhere that research into ME/CFS had the lowest amount of money spent on it which is a shame because it’s debilitating

@bedfrog I didn't know she had stopped doing it. Last I checked was January or maybe December.

@MewithME I absolutely know that feeling. I do that quite often. Sometimes I will order the kids a takeaway and make myself a sad meal for avoid the repucussions.

Managed to watch BGT with DD which is progress because she wouldn't watch it last week. Now audiobook in bed. Good night all.

@Tiredandwired2 I'm hungry now! I might go make an epic sandwich. There was a thread earlier...made me think I've not had a proper nice sandwich in ages.

I thought of you when I woke up this morning...sending very good wishes for a restful day.

Hope everyone has a lovely day!

I am avoiding screens at the moment as I am getting a lot of glare from my new eye. All fine but it's going to take a while to adjust. Second eye on Friday but not nervous this time! Over three weeks with no TV has been quite relaxing. We didn't own one before having children, and used to get threatening letters from the TV licence people!

Yup. It's ridiculous isn't it? I can't figure out why. I mean, it's not like people don't die from it!

Feeling a little better today after a mega sleep and dosing up on antihistamines. Still couldn't manage an outing. What a dreadful quality of life this illness gives us.

You know, I started this thread because it is really hard watching other people live and do the things we desperately want to do and can't. I still feel like that quite often, but it's better feeling like I'm not alone in my small world finding my small bits of joy. @bedfrog what will you do today? There's some good news podcasts around I can recommend while you're resting if you're into those.

I'm still weak but better than yesterday. DS has his friend coming over. I will be making them a nice lunch but otherwise resting today and happy I am not working tomorrow.

This morning has had a bit of sunshine. I had a few mins on my deck waiting for the kettle to boil. There's a little sparrow next door who must be nesting. He's been in the same spot making loads of noise most days this week. Fat little chap he is! V cute.

If the sunshine stays, I will sit out a bit and read. Otherwise I am going to lie on my bed and watch something.

The tinnitus is not great today. It's my original noise just now. Sounds like someone has parked up outside with the engine running. I will try and tune it out.

Morning all! The rain here was welcome as the garden needed it. However I need to ban myself from going out there as I did too much again yesterday. I just can't seem to sit without seeing something that needs doing! And although DH does all the 'big' jobs, it seems even the small amounts I do are too much. At least I don't need to water today 😕

So, a day of enforced rest today for me 🤞

Kettle's going on shortly if anyone wants a brew ☕

Perfect timing @Swanhilde ... coffee ☕ please 😉

If I remember right, you like knitting so maybe some relaxing knitting time if you’re able? Don’t worry about going out, I’m not sure about Scotland but it’s raining for me so best stay indoors and watch love your weekend

It is ridiculous about the research but I wonder if it’s because more women than men get it and there’s still that medical misogyny from some people

@MewithMEI'm so glad you made this thread! It's been fantastic hearing about what you're all up to, and a really supportive place as well.
Glad you have a bit of sunshine and your little sparrow friend sounds lovely 😍 your tinnitus sounds awful, I used to hear my fridge running in my old house and it would drive me mad, I can't imagine it all the time. Hope you've got some noise-cancellers!

Tea for me please @Swanhilde- decaf!

@JewelleryCat yup that's me. I've got some crochet to get along with and I've just found full episodes of 'who do you think you are' on YouTube so ill work my way through those. It's grey and overcast here today so a perfect excuse to stay in. I sat in the garden last night as we'd have a huge rain shower earlier that day and everything felt all fresh when it cleared up later. It was lovely. Yes I think you're right about misogyny. And I think the belief it's psychosomatic has unfortunately lingered. Someone said earlier on about people just not understanding fatigue and likening it to just feeling tired which you can push through. So we get no sympathy at all from people who have only felt tiredness!! (I've been watching 'love your weekend' after your suggestion - it's lovely and gentle isn't it? I do like alan titchmarsh as well, he's just grandfatherly isnt he?)

@Swanhilde peppermint tea please!

@MewithME we've been watching a long tailed tit repeatedly dart into the clematis and dash off with some wispy bits. We have a mother fox with her cub this year. It is so tiny! I know they are a pest but it's nice to see them playing. There were five one year, but they didn't all survive.

@bedfrog I haven’t seen who do you think you are for ages, is it still going? Have you watched today’s episode yet of love your weekend? Yes, Alan is like a grandfather for the nation. CFS definitely isn’t psychosomatic for us but hopefully in time, that will change and people will eventually understand

Hope all our friends from previous threads are ok. Been wondering about @stressybetty . Haven't heard from her for a while.

I love long tailed tits. They're so sweet.

Someone on the local wildlife trust filmed a fox in the bluebells the other day. Was just beautiful. Really made me smile.

Hi all 👋
@MewithME thank you for new thread.
Hope everyone has a nice easy Sunday.

Hope I’ve not missed the brew round @Swanhilde tea for me if not 😊

@MewithME I’ve not previously been into birds as in knowing the difference of the types, but last year we stayed with the in laws whilst having some work done on our house and they have a lovely peaceful garden that birds visit and found myself enjoying resting in there and watching them 🥰 Robins are my fave birds though probs as I am Christmas mad and associate them with that.

@bedfrog I love history type shows so may go for a toot on YouTube for who do you think you are episodes! Alan Titchmarsh does give off lovely calm vibes. Enjoy your restful day whatever you do.

@JewelleryCat I get what you mean about people not understanding thinking it’s just a bit of tiredness , I’ve found myself being very selective of who I have shared my diagnosis with as I don’t have the energy to explain it fully.

@TeaAndStrumpets I’ve never seen a baby fox 🦊 can imagine they are quite cute!

busy day in the moo household today, we’ve had lots of building work over last 12 months and with my condition becoming apparent just as the works have finished we are living in slight uproar still 😭 hubby and me made a plan over last few days to try and get things moving and tidy as I am wasting too much energy being stressed and upset at the state of the house. So we are picking a room a day and blasting it (well he is I’m supervising) and hopefully by the time I’m ready to go back to work everything should feel a little less overwhelming 🤞

Thanks for the new thread. Ginger tea for me if the kettle's still on.

Feeling the effects of yesterday - accidentally ended up with my highest step count so far this year on what I think was the hottest day so far 🙄 Fell asleep early but then was awake with raging middle of the night anxiety, and so far today I've only been out of bed to get food. Quite enjoying it being cooler today and I'm sure the garden is benefitting from the rain.

Hope everyone can have peaceful days 🌷

Aw thanks @TeaAndStrumpets I felt touched to see that, so lovely to feel support from people I’ve never met. Good luck with the second eye next week. Will be thinking of you!

I hope @stressybetty is okay too.

Your little sparrow sounds cute @MewithME and hope your boy enjoys his friend over.

I think I fell asleep and missed the tea round @Swanhilde but a decaf tea would be good.

Fed up with pain and being bed bound today.

Felt a bit more positive and reassured it was early days after talking to consultant Friday.

Then last night, wham! Pain hit again… not my head as originally but my left shoulder has been incredibly painful since the stroke.

Have a few especially bad hours before the morphine is due and cannot get relief with heat/ ice or find a comfortable position. It’s exhausting when I’m already exhausted.

Tried a bath today to see if it helped with DHs help. Bit of a shock to need so much help with that but my DH was a star and hopefully I’ll gradually get some strength back.

Slowly Slowly, catchee monkey! 🙈 ( on a lighter note, that emoji is quite apt… I was looking rather unkempt after over 2 weeks in bed and covering my eyes a lot with the photophobia. )

Hello, I think I have just found this thread, but part of me thinks that I may have found it before? Thanks brain.

Can I join please? I have a dodgy heart, and Fybro, well they have stopped looking for anything else and thats all I am left with as a possibilty, so I guess its fybro. GP said it probably was, as everything else is negative. Is that anyone elses experience of how its diagnosed?

Any way, what I have been up to today is planting some wild flower seeds in a patch DH and I cleared yesterday, and I also took the courgette and tomato plants outside to start hardening them off.

DH then made a lovely dinner of home made pie and mash, so we are now just lying on the sofas, like a couple of over fed labradors.