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! 😉

Evening all. Glad for good news about DHs @FuzzyPuffling and @Orangesandlemons77

I hope you get on OK at the event @MewithME and have some good rest planned for afterwards.

I've not felt too bad today, and am finished work now for my week and a bit off. A friend popped in on her way home from work and brought flowers and chocolate, which was nice.

Not sure if my big cry at the weekend has started something, but I just had a random cry at a video on Instagram of a couple getting engaged on the dancefloor in a club, absolutely not the sort of thing that would normally set me off!

@TodayIsatrickyone yes I'm technically WFH but may not be doing any work despite looming deadlines. I am going to have to be careful.
HR went to 168bpm and stayed well above 100 all evening. It was boiling hot and too much. This is an annual event... going to have to think about it for next year. Not sure how to make it easier. I don't want to not go, but I also shoulder a lot and it's too much.

Anyway at home and in bed now. 😊

@martha79 that sounds like hormones!

Good morning all.
It's washing and food shopping today for me. And DD2 is popping over for a quick cup of tea later which is always lovely.

Have the best day possible, everyone 💓

Morning all!

Hopefully a peaceful day for all. Yesterday the gas people finished replacing our supply. We've got a hole in our front lawn with a barrier round it, and one at the end of the drive. Yesterday DH was out and I was so tired I lay down and dozed off. That was the cue for a ring at the door and a giant workman wanting access to the boiler, so he was in and out a few times while I hovered. They're all very tall for some reason, maybe they select by height!

Anyway that's us done. The road outside is quite hazardous with barriers erected on both sides of the road creating a slalom effect. Drivers are blocked at one end but can get access the other. The number of people who still try to speed is ridiculous. Nobody has come a cropper yet but only a matter of time.

I had a panic about the state of the house so made a list for DH and he is going through the list and ticking things off. I'm finding it much easier and it's saving stress for both of us. I think we are just so different in how we do things. He is very methodical and likes a list, I am quite random and do whatever I notice needs doing. DH never notices dust or untidiness, but if it's on a list he will do it! Wish we'd had this system years ago.

What is so pathetic is how much I would love to do all the laundry, sort cupboards out. Just normal things. At least you get some satisfaction having improved things. DH doesn't get ANY satisfaction from housework, he's just doing it to please me. If I weren't here he'd never clean anything or change the tea towel!

@MewithME Oh heck that’s high HR doesn’t sound good. It definitely sounds like you need a recovery day today and let that HR settle. Is there a manager or anyone at work understanding of your illness who could support you with finding a way to make it more manageable in future for you?

@FuzzyPuffling enjoy seeing your DD later

@martha79 hope you can rest and enjoy your time off work

@TeaAndStrumpets I understand your frustration re being able to do normal stuff around the house. It gets to me too and I quite enjoy seeing a difference in a clean and tidy room! Our DH’s sound similar. Mine will happily work through a list too but doesn’t necessarily notice what needs doing in the way I do either though tbf he’s had a lot to fit in lately whilst I’ve been stuck upstairs so much. Someone on here suggested a laminated list in the kitchen to refer to which is a good idea. As I sometimes feel I’m just always adding more to his list right now.

A good visit to the osteopath yesterday. She could instantly see why I’m in so much pain. Apparently my neck/ shoulder muscles are popping out like muscle man! Not going to be a quick fix but in the half an hour I was in there I felt some relief for the first time in over a month. Slept well too and neck feels looser today and easier to move, shoulder pain still there but didn’t get the spasms last night 👏

Hospital today for the 72 hour heart monitor which doesn’t sound fun but might give answers so it’s good they're being thorough.

Then rest, rest, rest.

Have a peaceful day everyone.

Brilliant result from seeing the osteopath! That is really positive. As you say it's not a quick fix but you will see a difference week by week. I always find it takes a while to settle but being unclenched is such a relief.

@TeaAndStrumpets It was such a relief just to feel my neck unclench a touch, I didn’t want to move at the end. She did say the muscle would pop back out whrn I moved and it did but hopefully as the neck gets more movement, it will travel down. Also got an appointment a bit closer to home next week so she was incredibly helpful.

Haha gosh I hope not, don't need them misbehaving too!

Glad you had a good osteopath visit @TodayIsatrickyone - I miss my osteopath, we used to have some really good chats while he squished me!

Hope you're all enjoying the heat/ keeping in the shade as appropriate - I've been out to hang some washing out and that was enough for me. Hiding inside with the curtains shut like a moody teenager 😅

Meeting with the counsellor was good, she seemed to really get it, especially the tangle of mental and physical stuff and the fact I have problems both with coming to terms with the illness and all the other stuff it's brought up. She is local but happy to do online appointments for now and I can say if I want to swap to in person at some point. I've just sent an email to the LC clinic about how bad the NHS appointment was and checking that it won't affect me carrying on with them if I don't carry on with the NHS 'therapy' (I don't think it will but I don't want to suddenly be told I've turned something down so I can't get other help).

Felt really awful beforehand (yay adrenaline) and better but exhausted now, so off for a nap I think.

Ahh that counsellor sounds like a much better fit @martha79

Hi everyone!

Went to the gp today, signed off from work yet again. It's such a drag, I just want to feel a bit more well again.
Dh planted my foxgloves in the garden for me and put our cucumbers and tomatoes out too. Fingers crossed they actually fruit 🤞
Spent £13 on a soil ph kit to find out my soil is "neutral" - helpful!
Got Miranda Hart's book from the library (dh kindly collected it for me) so should be a good read. She had ME from Lyme disease i think. Hope the book is insightful.
Popping up to bed now for...you guessed it....some knitting and tv 😅
Hope everyone is doing as well as possible.

We are here and the sun is shining ☀️

Went to the supermarket this morning and stocked up. I am now resting in bed for the afternoon. DH is planning a bbq for tea 🌭

Tomorrow morning we're going to the market in the local town. I like to come here as we know the area and my capabilities so it isn't too daunting ☺️

Have a peaceful Friday all 💕

That’s great news @FuzzyPufflingI've not been posting but I’ve still be following along on the thread hope you both enjoyed your curry 😊

Afternoon all
Dull & (unusually) muggy here. Hoping it brightens up later.

Quick check in from me as I have been AWOL lately lots going on and not a lot of energy to deal with everything so apologies!

Day of bed rest for me as I am off to my nephews wedding tomorrow and had a busy few day so work up in pain and exhausted today 😞 heat won’t be helping either but I have ordered a new fan for our bedroom which is out for delivery today so timing is perfect ☺️

have a lovely day everyone whatever you are doing !

You've reminded me to buy Miranda's book. I had the audiobook a while ago but didn't get on with her narration (I generally like her but she was getting on my nerves!) so going to give the actual book a go as it was interesting.

I do like Miranda, I hope her book is funny and insightful. I loved her sitcom and I hope she’ll do really good on Celeb Traitors. Regarding the weather, it can go away because I don’t do well with heat and humidity

Hot but breezy here which is doable. Hope my house doesn't heat up too much. It's gross in hot weather.

I've been doing bits of work but just too knackered really today. I've done enough though.

Flopping on bed now. DS v happy with breaking up for half term and he's had a great day dissecting a brain at school 🧠 😂

A friend bought me Miranda’s book when it came out and overall I found it a positive read with a bit of humour thrown in. She does go off at a tangent often ( but then again so do I!) but I resonated with much of it and there are some great reminders to go slowly and be kind to yourself.

Hello lovely online friends who understand!

Having been struggling a bit of late but having a rest and catching up this afternoon. You’ve all been going through a lot! Main issues here are leg pain and issues walking. Many people with CLL have it but doctors poo poo it. It’s ghastly, like walking with bricks tied round your legs. Cytokines? Anaemia? Who knows? I’ve been getting out somehow but it reminds me I’m ill and then my anxiety goes a bit haywire. I’m really fed up with it.

Good to see you back @FuzzyPuffling

Glad you’ve found a counsellor @martha79 I had a chat with one I think could be the one but it’s nerve wracking. I keep panicking about the money, could I be doing something better with it? Had ACT last year, free sessions via blood cancer charity, it was good but not good enough apparently. I’ve got a lot to sort through.

I’ve somehow been keeping up with the novel I’m writing. No idea as my focus for reading is a bit shot. Am staring the denouement @MewithME It’s my happy place, I go there to lose myself and forget about my crap health. Really, it has boosted my spirits. Can’t believe it’s almost done!!!! 🥳🥳🥳🥳

Sending strength to everyone for coping with the imminent heatwave. Plan to sit indoors with my feet in a bucket of ice water, eating multiple magnums in the blast of an electric fan while dreaming of a white Christmas 😎

@Bluebellsandwishingwells the leg pain and issues with walking were a main symptom for me when I was first diagnosed with ME/ CFS too and yes the doctors don’t really seem to get that one. Does anyone else get the lactic acid feeling if they walk the slightest bit more than usual? I’m talking literally to the end of my street rather than a marathon btw but my body seems to think I’ve done a park run!
I so miss being able to just go for a walk. We overlook a popular walking spot and I often watch from my bedroom window thinking I wish I could still just do that!
Pain wise Epsom salts and a magnesium spray can be soothing.

Made hot dogs for tea. Why do they taste better in your head than in reality?

I am so very tired today. I think a couple of weeks of adrenaline has got to me. DH, however, has gone to the pub with his chums!

Hot dogs...I think its to do with getting the onions perfectly caramelised. But since I don't eat sausages what do I know?

@ValleyClouds I've never been able to make a hot dog at home that tastes as good as one from a burger van or stall at a Christmas market. Or even an Ikea one.

@Bluebellsandwishingwells I pondered about spending the money too (and knowing it'll be tough at times getting into things), but honestly I think our mental health is worth it.

@TodayIsatrickyone Yes I get the lactic acid pain from the slightest exertion. I got it when we went to big ASDA instead of Aldi, I had to stop and suddenly become very interested in the bottles of bleach so it could subside.

I suppose that will teach me for wanting to experience the decadence of a bigger supermarket!

I did manage a little walk today though, a nice flat one. Wild flowers are looking lovely. The new housing estate just up the road from me has some meadow seeded areas, and a nice smooth path going round the outside. So thats handy for me, makes a pleasant walk, and it means the dog doesn't get muddy.

My body has decided it was getting bored with the usual symptoms, and thought I'd enjoy a flare up of IBS as I haven't had one for some time. So that was an unexpected joy. I have drunk quite a lot of peppermint tea, but at least I could have it sitting in the garden.