What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

A ... cassette player @TeaAndStrumpets ? I didn't know such things were still available! I know kids are into retro tech but didn't think cassettes were around!

I had my wake up in the night again but it was later (because of the clock change). Don't feel too bad .... Only the stomach ache, joint pain , tinnitus, slightly sore throat and headache this morning 🤔😆

I should pack today.... I really can't be bothered 🙈

Haha it's all coming around again! The reason I've got this one is it can record from tape to mp3 so will be quite useful for rescuing obsolete media. Both DDs were sorry to upgrade to cars without cassette players....they each had old style Minis as their first cars, then ancient VW Golfs.

We still have boxes and boxes of their old tapes here, lots of mixtapes of course. I've hung on to them for years but nobody had anything to play them on.

Retro tech is coming back? I never knew that

I've still got my old mixtapes! I had two good friends who used to make me them and ... POST them to me 😍

Great purchase @TeaAndStrumpets! I still have an old Technics stereo system that I bought in about 1999, complete with tape decks - I don't have many tapes left, but there is an old mix tape in there that a friend made me about 20 years ago.

I've found the last few days really interesting health-wise, especially yesterday as I was 'nicely tired' by the end of the day and not queasy and fluttery - much to be said for the nervous system involvement in it all, and the fact it's very obvious when I'm around people I feel safe and comfortable with.

Got my first Long COVID clinic appointment set up for a couple of weeks. Hoping that'll be useful - I've heard a lot of good feedback about the one here (and not just the quotes they put on their webpage).

No plans for today - got up and had breakfast then back to bed for another hour sleeping and I'm still sitting in bed in my pyjamas at the moment. Back to work tomorrow, but at least it's only a two-day week.

It seemed to be quite the thing when my girls were teens. DD1 in particular seemed to get loads from boys 🙄

It's all vinyl now!

@martha79 that sounds very good. I agree about feeling safe, it calms down the nervous system. Also not too much excitement! I have to avoid tense drama on TV, it jangles my nerves and I get adrenaline rushes in my sleep. Strictly no TV after about 8.30 pm policy here, hence I read a lot!

Vinyl? Mind you, I guess everything makes a comeback then isn’t fashionable for a while

I still have my mix tapes too!

Sadly I'm getting bad again, arthritis is flaring, and I'm exhausted and miserable.
So hard after having some relatively energetic weeks. I really thought that this was it, I was getting better.

The worst bit is telling family and friends that I'm worse and can't do things again. I hate being flakey.

Hope everyone's enjoying the sunshine!

Well it's such a nice day here, but rather chilly, especially in the evening. Perhaps you will feel a bit better when we get some warmer weather. I think being cold makes things feel worse. Also, having a fluctuating illness is difficult for people to understand but eventually they do get it.

You are not flakey!

Day 2 of annual leave here. I semi decided on heading off on my trip tomorrow however I have peaked for today and now crawled into bed. Nothing is packed.hotel not booked yet . 🙈

Just catching up on posts, hope your trip goes Ok MewithME, sounds stressful. Take it step by step, and hope when you get there it seems better than right now.

I made it to Aqua aerobics today for the first time in months. Will probably pay for it tomorrow, but I took it carefully and it was nice to get out particularly as it was sunny.

I want to try to go twice a week if possible, Tues and Thurs so would have the in between days to recover and rest.

I think the thought of needing gallbladder surgery has prompted me into trying to exercise a bit / getting healthy as I can be without the mounjaro, which I guess I will need to stop now

@TeaAndStrumpets its chilly here too from early evening so keep wrapping up warm!

@MewithME I hope your trip goes well. I'm sorry to hear about your sibling not understanding. It's so hard when people don't get it but you have to look out for you because no one else will. I get it though, counselling has helped me work through putting myself first rather than destroying myself to make everyone else feel ok.

Im exhausted today. I have a tip run tomorrow with the kids mucking in and then off to Starbucks with them. Then I am mostly resting for a few days.

Think I am done with decluttering consciously now. The rest needs to go in the bin. It's not good enough for charity and even the tip shop are fussy with what they take. Its been sitting there for years but the mad rush is for my daughters online therapy which she will have in this space. I don't think a chair in the middle of a cluttered room is quite so relaxing.

Im getting flare ups now and need to slow down. I have slowly come to the realisation that I potentially have complex PTSD after speaking to my daughters therapist about her symptoms. Another thing to add to the list of things to address

I found it, seems ok? best to discuss with the doctor I reckon.

bnf.nice.org.uk/drugs/ursodeoxycholic-acid/

I think decluttering is good in general, but my goodness it's hard work! It's often the mental load of making decisions that makes it very tiring. I try to send a bag with DH when he goes to the osteopath, which is almost next door to the charity shop. It all helps.

Your daughter will have a calm safe space so that will be lovely for her.

Evening all! We have come away for the night and I have spent a wonderful sunny afternoon wandering around Westonbirt arboretum amongst the magnolias, camelias and cherry trees ☀️🌲🌳🌸

Now I am shattered and my hips are burning but it was worth it to enjoy visiting somewhere new 🥰

I'll just about make it to an early dinner in the hotel bar and then to bed. Need to make some plans for tomorrow morning too and then home to collapse 😆

Have a peaceful evening 💕

That sounds a beautiful day @Swanhilde

Hi all just trying to catch up with all the posts 😊 sorry if I miss anyone the brain is definitely “fogging” today!
@martha79I am glad your dad is on the mend !
enjoy your trip @MewithME.
@Tiredandwired2keep on with putting yourself first
I am slowly learning that I need to do this and it is hard when you’re naturally used to putting everyone above your needs. @Orangesandlemons77 Well done on the aqua aerobics I want to be able to incorporate some form of exercise once I have a better understanding of my limits 😊
I second @TeaAndStrumpets you are not flakey @BerfyTigot you just trying to live within your limits at the minute hope you have a peaceful night. My bosses son (17) got a tape deck for Christmas @JewelleryCat so does look like they are on the way back around! I still have my very first album on tape it was Madonna True Blue still love it now.
Having a testing day at the minute got the visible band and had a busy day yesterday working in the office then went out with son for drive in his first car 🥰anyway long and short of it is I woke up tired and wobbly this morning with a stability score of 1 😔luckily I’m WFH so not moved really so far. Anyways my question is if you have noticed that walking even short distances seems to drain your energy the most can it ever improve? Will walking more Improve it?

Glad you had a lovely afternoon @Swanhilde

Fab @Swanhilde!

@Dozymoo42 it's interesting about the legs. When I'm feeling OK I seem to have energy in my legs, when I'm very fatigued my legs feel like they're made of lead. I think this would apply if my legs had muscles or not! The CFS just removes my batteries.

Oh I love it there I'm not that far from there. It's a lovely day for it

Evening all

The arboretum sounds wonderful @Swanhilde

Well done with the decluttering @Tiredandwired2

@Dozymoo42 I don't know, but my GP told me to stop thinking about 'progressive' exercise for a while (because I was trying to "do a bit more every day") and keep it to less than I thought I could do for a while - e.g. if I feel like I could walk for 15 minutes, do 10, and keep it at that for a few weeks.

I recognise that description @TeaAndStrumpets - yesterday my legs felt noticeably OK, but I often get a feeling like they're not properly connected to the rest of me or stable.

I spent about an hour in the garden today - planted a few seeds and then sat and had tea and cake. Other than that I've done a lot of napping!

I’ve only had the band on around 4 days so far but the biggest jumps in energy have been from walking normally and doing the stairs especially in the afternoon/ evening. When I say walking I mean inside like walking to the loo in the office etc As I go everywhere in the car with hubby - it’s been a bit of an eye opener really as things I thought would drain me like work etc are not having the impact I expected which is really positive for me cos it means if I can get an handle on pacing then I can get a good balance between work and home 🤞