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 😁

It really doesn't work to compare @Dozymoo42

Mine changed as my heart rate zones were updated. I spent ages back and forth with the team to get them right and then had to change my pp. I think it's about right now for me but some people have single digits some have 20+ or 30+. It doesn't mean that you are less bad than someone else who also has mild MEcfs if your pp budget is higher.

It's grey and chilly here this morning. I have to go into work again. My leg is still super sore and itchy from the flipping heat rash thing so I think I'll have to wear short length trousers or it'll drive me mad!

Hope everyone has the best day they can.

I've just got the free version of Visible, so just get the morning score. It's 5 again today. Bit odd.

Going to go to aqua aerobics and see what happens later in the week.

I tried going to install the full version of Visible but it's not compatible with my Android phone.

Morning all.

I've got free Visible too and I do find it useful, although still sometimes confused by it. Got a 3 this morning, which mainly seems down to my HRV being higher than normal. Which might be because I had a better sleep.

Dark and rainy here. The event I was meant to be running at work this morning has been cancelled, so I've got a slightly easier day. Payday too! Just ordered some new glasses after my sunglasses revelation - a pair of sunglasses with the right prescription, and another pair with just a slight tint, which I think could be useful when it's not full-on sun but things still seem too bright.

Morning all! (This has been corrected about 8 times.)

Woke at 6 and got up, than another visual migraine hit. So annoying. Just painful now but I couldn't form words for a bit. Even now lots of typos. Intense light in my eyes yesterday, sunny day, busy week. Perfect storm really!
Hopefully nearly got over it...they often come in clusters. @martha79 sympathise with the photophobia. Can't wait to get new specs in a month or so. I've got cheap sunglasses but they rub my nose raw!

Should be avoiding screens really but bored with DH and his friend taking over dining room for a research project.

Have a good day all!

Thanks @MewithMEit’s good to know things can move and change they’ve started me with 10 points a day so just trying to gage what other people are looking at. Hope you have a easy day in work!

I had a bad week last week 😢 was stuck in bed most of the week but moving slowly in the right direction now hopefully 🤞 yesterday and today woke to a morning score of 4 so I’m aiming to continue resting as I have been then moving slowly back to normal pacing. The doctor has given me 4 weeks off work so I feel more able to rest etc and move slowly rather than how I have been doing everything on the fly up until now.

it is also grey and gloomy here today have a restful day everyone

Hello all 👋

Have been dropping by periodically to catch up (usually plopped on my sofa with lunch) but no energy to post anything for a while. Have been empathising so much though!

It’s been very full on at Chateau Bluebells of late. My blood numbers are not great and I seem to be getting tireder and tireder. Everyone with this condition wants to stay on watch and wait (where I am now) as long as possible as the drugs they use have so many awful side effects 🙁 I’ve been feeling very sorry for myself.

At same time DP has had a big work reshuffle and has to go into a different and much loathed office. It’s caused a lot of fuss to usual schedule as well as much general tension (although understandable) and I’ve lost hours of my alone time, which is pivotal to me coping at all.

Then a letter from hospital saying I have extremely high vitamin D levels and need more tests. When everyone else is trying to increase theirs, mine are bordering on toxic! So I’m even a bit (lot) worried going into my lovely spring garden at mo, what with my massively increased risk of skin cancer due to my blood disorder. It’s all a bit much 😧

I broke down to a friend last week, a bit embarrassing in the cafe, but it needed out it seems. Subsequently started googling local counsellors. I have a first chat lined up with someone in a week. I can’t afford many sessions but maybe talking stuff through will untangle things a bit and allow for more clarity?

Blimey, thanks for listening to that outburst 😯

Oh that sounds generally unsettling @Bluebellsandwishingwells and no wonder you need your down time. As for the vitamin D levels it it certainly is the opposite problem to many! I suppose big floppy hats and flowing garments could help a bit but it must be a pain to be so restricted.

Glad you could pop in for a while!

Home from work and in bed with a cuppa ☕

Exhausted today - headache is lingering and legs feel like concrete. It's my usual PEM, so much as I expected 😕

Still, one more work day to go and I have cancelled my eye appointment on Thursday so that I have a completely free day. Hopefully, if things go as they usually do, I will start to recover by Friday ready for the long weekend 🤞

Chilli and baked potato for tea, followed by a v early night 😴

Sorry you've got so much going on @Bluebellsandwishingwells. I think talking to someone is always a good idea.

Ok day here but struggled through a long meeting this afternoon and then my body was uncooperative with going for a walk after work. Have put together easy food (ready made falafels, hummus, olives and bread) and got into bed.

@Bluebellsandwishingwells hoping your soon feeling a little better 🤞
@Swanhilde that sounds like a good plan! Your tea sounds lovely also love a good jacket spud ☺️
@martha79 well done you on getting through the work meeting a night of rest definitely sounds in order!

I’ve been resting all afternoon doing some embroidery to keep myself entertained just about to cook our tea not sure what we are having yet 😊 sharing pic of my embroidery it’s not the neatest but I enjoying it and that’s what matters!

That’s really lovely @Dozymoo42 so intricate

Thank you 🥰 It’s just a simple kit to follow but it has helped me over the last week of resting

I couldn’t even follow a simple kit lol, I wouldn’t know where to start and it’d probably hurt my hands but it is looking beautiful

That's such a lot you have going on @Bluebellsandwishingwells. Sending hugs your way. Counselling is a good idea. I found it very useful to have someone to listen and reflect things back to me so I could untangle what was essentially a lot of grief. I hope it helps you.

@Dozymoo42 that embroidery looks lovely.

It was an admin day for me today. Finances sort out in particular. My brain works so much slower than it did pre-Covid. Everything takes forever and nothing makes sense. Stupid brain.

Anyway, now in bed and probably an audiobook and sleep.

Thanks for your good wishes. I love this space, it really is comforting at so many levels and makes a genuine difference in my day. Aaaww!

Hello @TeaAndStrumpets Yes, am eyeing up some expensive hats to cheer myself up. If I need them I might as well get some I love. I do have a tiny pea head apparently so hat buying could be fraught. But I will carry on. Yes, linen will likely feature a lot. Long way back now but hope your feet have healed. That was a terrible tale! You seem to have come through well with the cataract operations. They seem to face us all at some point.

Thanks @Tiredandwired2 A lot of grief in the mix for me too. Think it could be helpful. I seem to need someone to hold an end while I unravel the other it seems. Too much of a knitted ball to deal with alone.

@Dozymoo42 I love your stitching. Am a crossstitcher or used to be. Have too much hidden in drawers, need to get things framed. You inspired me to get out a kit (even if it’s just choosing one at the moment). I have plenty!

And @martha79 I totally sympathise with your funny turn in the shop the other day. I seem to be in a space where coming over all unnecessary is part of my every day. I’ve slumped down on benches, at roadsides, staggered out of shops. For me, it could be stress, but it started post menopause, so that relationship as well. Everything started then for me. In my 30s and some 40s I was so healthy and carefree, jumping on trains and planes, never a twinge of feeling unwell, could sleep fabulously anywhere, always on top form. It boggles the mind.

Recent ‘issues’ have addled my brain so much I’ve stopped writing. My novel is usually my happy place so am going to try to rectify that today. It’s almost finished!

Beautiful weather. I bundled myself up in scarves and big sunglasses and bravely went out earlier. I like to think I looked mysterious rather than ill 😆

It's oddly sunny but windy here, might go in the garden for a bit to get outside.

Managed a shower this morning and a bit of laundry. I have put on a bit of weight since coming off mounjaro so will need to keep a bit of a check on that.

Love the embroidery @Dozymoo42 - I keep thinking I could do with a craft to try, it's not my strong point and my hands get achy easily. But then I also make them achy by scrolling too much on my phone so would be better to do something nice!

@Bluebellsandwishingwells coming over all unnecessary is a great description. There may be an element of (peri) menopause there too, I did start HRT last year but got taken off it because of side effects and not knowing what was that and what was Long COVID stuff.

Ran an online event at work this morning then the rest of the day is pretty quiet. Had lunch in the garden - it's sunny and windy here too @Orangesandlemons77. Good weather for hanging the washing out. My Vinted purchases arrived and I've given them a wash as I can't stand the amount of fabric softener smell things always arrive with! Did try a couple of things on though and it's rather nice to have trousers that don't squeeze me in the middle.

Totally agree with you @Bluebellsandwishingwells this space is lovely just having people who understand and sympathise with you rather than offer advice like have a night relaxing bath and an early night you will be right as rain.

Enjoy your embroidery I’m doing a bit at a time which is hard as I usually get engrossed and lose time 😂

Phew! I am home and work is done for another week. In bed resting with a cuppa ☕

Cheesy leek and potato pie for tea followed by another early night. Not feeling too awful actually, mustn't ruin it by doing too much ...

Have an easy one all 💕

Evening all. It's been a gorgeous sunny day here.
@Bluebellsandwishingwells sorry life isn't good atm. Hope it all improves for you. Have a look at Craggi. They do some nice everyday baseball & baker boy hats if you don't fancy a big floppy one.
@Dozymoo42 love the embroidery. Used to do it years ago. Might have another bash in the summer - you've inspired me!

Morning all, happy Thursday.

Went all-in on a pre-bed routine last night. No TV after 7pm, read a bit, hot chocolate, yoga for sleep online class, went upstairs and didn't turn any lights on, quick shower, magnesium capsule, magnesium body cream, clean sheets, sleepy podcast. Still had weird dreams, but slept 10-5.30 which is an improvement (especially not waking up at 4 which makes it hard to get through the day). I guess I'm not doing much else in the evenings so may as well 'invest' the time in getting better sleep.

Visible was 4 this morning, and I don't feel too bad. It's meant to get hot today and it's already very bright so am keeping as many curtains closed as possible.

Morning everyone. Did some weeding yesterday then saw friends and now i'm absolutely wrecked. My fitbit daily readiness was 16 this morning (the lowest ive ever seen it!!) so i'm feeling quite annoyed about that really. I suppose I'll be taking it easy today. I've come to a really fiddly part of my knitting too so I'm wondering whether to just abandon it for now and start another easier pattern until I've got some energy back

Had a lovely time seeing friends but I get so sad that it just takes so much out of me. We live quite spread out too so it's not a 6 minute drive either. I've found driving so much harder since having covid as well, I used to find it quite relaxing.

Hope we all have a lovely day and the sun shines for us all 🌞

Meant to say @CoffeeBeansGalore - those Craggi hats are fab, thanks for the recommendation. Definitely on my shopping list (getting a bit bored with baseball caps).

I also had a look at embroidery kits last night but wasn't convinced I would manage the level of concentration as I've not done anything like that for years. Did buy a cheap paint by numbers canvas as something to do over the bank holiday weekend though!

Day of doing nothing here. I have some seedlings to pot up and may get my broad beans out into the bed, but that is it. Slow and restful is my mantra today 🧘

@martha79 that was a very nice stretch of sleep. Hope you feel the benefit!

After two days with migraines, first thing yesterday was better. I think my stress levels had boiled over! Back to a slow simmer now. Up twice last night, listened to an audiobook for an hour then bed at 2am and got 5 hours in.

I am still resisting paying for audible because I don't like all their narrators, but there's plenty of stuff online free. I recently listened to Whose Body read by Ian Carmichael. Even over 100 years old it is still gripping.

Edit to add he didn't actually record it 100 years ago!

Edit once more to wish you all a lovely day!