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! 😉

Afternoon all.
Had a good physio session this morning. A few more exercises to include. Shattered now though.
@TeaAndStrumpets noise can be so intruding. Hope they finish ahead of schedule. It's all very well promising heaters if it gets chilly, but they won't pay for your extra electricity costs!

No very true! Hope we have some warm weather 😎

Well done with the physio.

Hi all,

shattered today due to Camhs appointment first thing with DD. Walked all around the place to find it so that was physically tiring. She also had me up until 2pm due to her anxiety. But it's done now and I have decided it's beans on toast tonight. nice and easy.

@TeaAndStrumpets I hope the gas works don't take long. In terms of visible I found it great for the physical stuff but not so great for the mental side. However, I did find it good for tracking my heart rate after eating certain foods so that was brilliant. From my experience I'm not sure how useful you will find it for the overthinking. Someone else may have had a different experience though.

@CoffeeBeansGalore well done on the physio. Hope you get some good rest now

Finally woke up after my cinema trip last night. I didn't get back until gone midnight and then was too wired to sleep for a while after. Ended up sleeping for 11 hours when I did managed to drift off, but I'm not too sore today surprisingly.

I'm now counting down the days until the newest book in the series I've been obsessed with for the last year comes out on the 12th. And I'm not very good at waiting!

@TeaAndStrumpets & @Tiredandwired2
Thank you. I intend doing absolutely nothing for the rest of the day 😁

Home from work and in bed with a cuppa - half my working week is complete 😆

Have a restful evening all 💕

👋 waving at you all and reading the thread. Sending support to those who need it.
Hope work is manageable for those back today and a shorter week helps.

Pain has been very tricky over the weekend as well as utter exhaustion which is apparently common after stroke. ME pain/ exhaustion also kicking me so everything felt a bit much. Lots of tears yesterday and wondering how I’ll get through this.

Had a good sleep though thanks to meds and physio visit this morning though so feeling a bit more bearable right now.

The physio was excellent, she was very thorough checking me over and really helpful in suggesting gentle movement and finding lying/ sitting positions and supporting with cushions that do seem to help with this additional neck/ shoulder pain.

I had a GP phone appointment due too which came through as the physio was here which was so helpful as she could help explain the issues ( memory a bit crap still when tired) and GP was able to prescribe more pain relief for now.

All of you with ME/ CFS/ Fibro will totally get how astonishing it feels to actually have support for once after 20 years of ME and being left to get on with it and figure out anything that may help myself. Anyway I’m grateful but I feel angry at the same time about how utterly abandoned ME patients have been.

My positives for this afternoon are another long much needed sleep after the appointment.
Then I managed to get downstairs and sit on my recliner by the door for 20 mins looking at the trees/ flowers. 👏
I tolerated the light better with sunglasses today and getting outside helped me mentally so I’m very grateful I could do that today.

No spoons to reply individually but reading along whrn I’m able.

You are doing really well @TodayIsatrickyone ! Looking forward to you being well enough to chat but rest rest rest for now. 😎

@TodayIsatrickyone Glad you have a decent physio. It can make a world of difference. Take care.

Morning all!

Couldn't sleep last night so sat up for an hour and listened to an audiotape. As usual browsing MN was too upsetting/annoying!

I'm getting ready for my next cataract surgery, trying to think of things I've got to avoid next week like bending and lifting. I've had a good hairwash in case the hot water disappears in the next few days, also had a precautionary basic pedicure 🙄

I read an article about how Tracy Emin can now see her paintings in true colours after having her cataracts done. I am pleased for her. Her work isn't my cup of tea but I admire her extreme perseverence. She has trodden her own path in life.

Good to hear you are pushing on @TodayIsatrickyone! Really happy to hear you have a decent physio!

@TeaAndStrumpets must have been the night for being unable to sleep last night I was exactly the same! Sat on couch with the doggos currently as we have the plumber in removing radiators and fixing pipes - hoping he finishes soon so I can nap 😂 I feel like your second surgery has come round really fast just think will all be over soon ☺️

Thanks @Dozymoo42 it's been 4 weeks which is great. I suppose I could have spent the money on a cruise instead 😉

Oh I panic about anything plumbing related, also hate having people round, a double whammy for me! We needed a new boiler last year and although the lads were all lovely it was very tiring being alert all the time.

Yeah I get what you mean am sat here trying to keep my eyes open 😳 the guy is lovely but don’t want him to have to wake me up 😂

Afternoon everyone, hope we are all well.

I've been suffering with my headaches lately. I want to ask my gp for another neurology referral even though last time they said no because I had a(n incorrect) fibro diagnosis. I think i have occipital neuralgia which can actually be treated. Unlike the pain service telling me "just get on with your life" when I literally can't get out of bed or see during an attack.

No energy to reply individually but I hope everyone is doing well and having a good week.

My long working week is done and I am home in bed with a cuppa ☕

DH is cooking dinner and then I am going to have a early night 🥱

Have a peaceful evening all 💕

I'm sorry to hear about the divorce @Tiredandwired2 . That's v hard.. Smaller house is easier energy wise but get it decorated throughout first if you can. It's harder moving stuff and coping with tradesmen when it's a small house.

I started writing this a few days ago and have been too tired to properly catch up with everyone.

Work is crackers as usual. Exh is being a nob again.

Anyway, I have a blissful hour before ds gets home. I am in bed. Going to lie down properly.

Yesterday was a body says no day, so sod all was accomplished apart from reclining gracefully (ha ha, I was wearing my elephant arse trackies and a t shirt whose next career move is becoming several dusters) and reading my book.

Today was a bit better luckily because my mums cleaner phoned me to say DM was poorly. Long story short I managed to get her a GP appointment today via NHS 111, and a neighbour very kindly took her.

Turns out she has an infected leg ulcer, and is now on antibiotics, and the nurse is checking her again tomorrow, and the GP again the day after. So it obviously has the potential to turn quite nasty, so glad I insisted she be seen.

Its amazing how a little bit of stress can wipe me out now, I used to be able to sort all manner of problems at work and still be fine. Since covid any tiny thing can send me into a tailspin, and I crash with exhaustion.

Hope everyone has a good day tomorrow, I am tentatively planning a garden centre trip. I know I'm tempting fate by planning anything, but I'm whispering so the fibro doesn't hear.

Sounds awful @bedfrog . Hope you feel better soon and be great if you found an answer to one source of pain

@Swanhilde enjoy your weekend

@MewithME hope your lie down helped. Boo to ex husband being nobs

Ive predictably now got PEM from not pacing enough and been in bed all day with PEM and a horrendous migraine. Decided, rightly or wrongly, to stay off work at the onset of PEM to try and avoid months of it. Hoping if I have 4-5 days (don’t work Friday/monday) rest I will come out of it quicker.

I think Tracy Emin is a bit of a treasure. I am quite fond of her (not that I know her personally of course) but she's endured so much and is an authentic genuine person in a shallow world. I'm the same, that her work doesn't quite do it for me but I would love to see her show. @TeaAndStrumpets

@Dozymoo42 I loathe having anything done in the house. I am ignoring a long list of things that need doing.

@danglethedingle life with MEcfs is a constant tightrope walk.

Morning all, sending you virtual hugs and comfy cushions to recline on.

Not had energy for much beyond work this week. My LC clinic therapist is coming round this afternoon to set up my shower seat so I will be allowed to use it - obviously I have therefore used up energy cleaning the shower because someone will be coming in and looking at it 🙄Not that it was terrible but I hate the thought of anyone thinking my house isn't clean!

Planning to go to orchestra rehearsal again on Sunday so very much taking it easy the next couple of days.

Morning all - an unexpectedly but welcome sunny one here ☀️

I have an acupuncture session this morning and then I am going over to the College this afternoon to collect some of my ceramics. I have 2 pieces left to glaze, which they are kindly letting me do as well ☺️

Take it easy all 💕

Hope you are all doing OK. Thinking about Todayisatrickyone recovering from a stroke, you are doing really well, it must be really hard, on top of everything. take it easy and glad to hear you have some support. and that the physio was good.

Just in bed with coffee and awaiting the Ocado delivery this morning.

I've got a follow up in the summer from the ME / CFS clinic after filling in a questionnaire the other day. Not till July.

Anyway that's about it really. I'm inspired by some of you doing e.g. acupuncture and might try doing some kind of aromatherapy massage at the local college if they are still doing it.

Kind of you @Orangesandlemons77 its a roller coaster for sure. I remember every step with the CFS clinic taking a frustratingly long time.

I just popped on to share a positive moment. I feel a tad stronger today so I decided to try and lie on the sofa and not only that…. Drum roll please…. I made myself a flipping cup of tea! Taken a photo and sent to friends and family as I’m so proud of myself!

Hope everyone can have a good day 😊

Hurrah! Well done 💕

@TodayIsatrickyone well done! You should feel very proud. May I recommend something that might be easier? I don’t know what sort of kettle you have but have you heard of a Uccello kettle? I have one and you only need a finger to tip the kettle, it’s that easy. You do need a bit of practice to figure out the best position for the mug so when you do tip it, the water doesn’t go everywhere and if you can’t lift it to fill at the sink, you can use a jug or mug to fill the kettle

https://www.essentialaids.com/kitchen-aids-feeding-aids/kettle-tippers-teapots/uccello-kettle.html?