What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Home from work, in bed with a decaf cuppa. Pain more manageable today - one flight of stairs. Baked potatoes for tea, DH will sort.

That's my working week done, three days is enough. Wednesday is the new Friday!

@Orangesandlemons77 as someone who shares caring for an elderly relative, I'd like to echo pp who said to resist getting involved.

We have found that of the 5 of us children, because 2 of us stepped up initially, the others suddenly developed reasons that they couldn't help at all

Your course sounds interesting- i wish they did something like that online and self paced

Very tired for the last 2 days. Looking after dad has exhausted me this time.

Driving home tomorrow so I need to have a decent sleep tonight 🙏

I’m also super tired. Did 2 days of work and that finishes me off. Not sleeping well still either which is like a double whammy of exhaustion.

Counting down the days to the weekend!

Yes an online course would be good. I hope those who are tired get a change to catch up some rest

Looks like a storm this weekend. Might be a good excuse to stay home x

I think lack of sleep trebles the pain, discomfort and general feeling of hitting a wall.

I am sleeping mostly ok but if not I always have a sleep aid close to hand to help.

Has anyone here used the visible armband to help with pacing? I’m using the free app but keep thinking about trying the armband but wondering how useful I’d find it as I do pace reasonably well after years of illness as it’s the only way to get through a day.

Doing a bit of baby proofing before our grand daughter comes tomorrow. She's only 8 months old but is already pretty determined to move under her own steam. The family lives 80 miles away so we don't see her very often, but DD sends me loads of photos!

@Hotbeverageplease
I tried the visible band but after a while I found it heightened my anxiety around my health, especially when I couldn't pace enough.

I also got obsessed with the pacing number rather than listening to my body. That may have just been a me thing though because I hear a lot of people who get on with it.

I would consider trying it again though. It was absolute gold for identifying the tasks that had the biggest impact on my energy and helped me realise that my POTs symptoms were having the biggest massive impact on my energy and needed treating.

When I had beta blockers I could see a clear difference in my heart rate and points used e.g. 25 a day to 3

@TeaAndStrumpets ahh I imagine you’ll be looking forward to seeing your granddaughter tomorrow. Enjoy 😊

I used it for a while. If you're pacing well anyway I'm not sure you'd benefit from it tbh.
They have very slick marketing which you may well be seeing all over your feeds.

It doesn't show is the impact of cognitive tasks and social stimulation which take it out of me as much, if not more, than physical movement.

I certainly wouldn't take out an annual subscription if you do decide to try it.

Today has been centred around a cardiology appointment. I forgot how much energy and time it takes to go to appointments.

It went well though. Prescribed Ivadabrine which is exactly what I wanted to try. I am hoping it helps manage the PoTs. My heart rate was 175 yesterday after changing the bed. Consultant was lovely.

Knackered now so resting and will throw something together for dinner with the leftovers from my meal prep Monday.

Oh, and son is unwell with a cough, temp and body aches. I really hope it's not Covid. Every time I make some progress with my health I get struck down again. Had it 4 times so far and I really don't want it again.

Thanks @Hotbeverageplease it will be a great treat!

I have three much older grandsons who are lovely but never thought there would be a little girl in the family. Such fun.

@Tiredandwired2 fingers crossed it's not Covid. I had it twice last year and that was plenty.
It's so tiring going to hospital, with miles and miles of corriders to walk down not to mention the mental stress of the appointment itself. Hope you get some improvement.

@TeaAndStrumpets aw how lovely! Must be nice to have a little girl after the older grandsons.

@Tiredandwired2 glad the cardiology appointment went and hope the new meds make a difference.
@didntlikethis thanks both for the feedback re visible. I’m def getting targeted by the ad campaign! I did wonder if it would add to health anxiety especially in situations where I can’t rest. Thats interesting that it doesn’t show the impact of social stimulation/ cognitive tasks too as those are big energy drains, plus any stressful/ emotional situations too. I do like the idea but wonder if it’s perhaps more useful in the early days to get the hang of pacing/ triggers ect..

Lie in this morning followed by acupuncture. Not sure if it helps but I do find it relaxing. On the way home I nipped to our local nursery and got some bulbs and violas. That's a cheerful task for another day.

Two hour nap this afternoon. DH is out tonight so I will have salad for tea and catch up on the Bake Off. Need to prep some veg for chutney making tomorrow too.

I have a Garmin watch which is similar to visible I think. I got it to track me when I used to run - now it tells me when I'm overdoing things grating cheese! It can be useful as it reinforces when I am out of spoons and need to rest.

Have a relaxing evening everyone 🧁

Made it to the gentle pilates class which was good but found it quite hard. We had to do stuff lying down with a squashy ball under the pelvis which was quite wobbly at times, but gave it a go anyway.

The relaxing bits were good!

I got an email with dates of the chronic fatigue course which starts in November into December, along with several 'workbooks' to look through.

It's meant to be stormy out the next couple of days but I think it should mainly be over by Saturday, here anyway. Not sure about further north, they might have it longer.

Hi all. Yesterday was waaaaaaaaay too much at work. I came home early today and have been in bed. Relatively happy though I suppose. It's all relative.

Got to make tea now. Omelettes today.

Looking forward to the weekend. Haircut for DS at last and as much rest as I can manage.

@Hotbeverageplease I have used visible for a couple of years. I think it's really good. Ask me questions later if you have any.

I'm so tired I can't think of what to say about it of my own accord!

That sounds like a pleasant day @Swanhilde , with lots to look forward to -chutney making sounds very satisfying , ditto planting bulbs.

I get such a stiff neck if I grate or peel I tend to avoid those things. There are so many mechanical aids for chopping veg, but I've never found anything that will peel thinly. The Y shaped peeler is the best manual device. There is an apple peeler with a design unchanged since the Victorian age, but nothing that will peel a carrot or parsnip! For ages I have had a "Masha" electric masher in my Amazon basket, though, hoping it gets reduced in the sales. We do freeze mashed carrot and parsnip for me as I can't eat potatoes, so make loads at a time.
@Orangesandlemons77 I used to go to pilates but had to stop mostly because of the journey to get there and the walk from the public car park....and it was up a steep flight of stairs too! I do miss the other ladies, though.

@TeaAndStrumpets cooking, gardening and knitting are my low energy hobbies that I'm left with following LC. DH now does all the chopping, peeling, grating when necessary. He also does all the chopping, digging and carrying in the garden. He's a good egg.

I also used to practice yoga, but the last time I did my class, I had to have a week off work!

He sounds like a good 'un!

Fingers crossed your son doesn't have COVID - kids are such germ buckets.

I'd be very interested in knowing how you get on with Ivabadrine. I've just started a more regular dose of Bisoprolol but if that doesn't work well for me, Ivabradine is the next one to try. I'm also going to start a trial of H1 and H2 receptor antihistamines.

I take the antihistamines @didntlikethis Didn't think they had much effect other than help my nasal drip, until I ran out of my H2 ones and the fatigue hit me like a brick wall after a couple of days! Definitely worth a try.

Yes, Visible didn't help with anxiety but was useful in the early days when I saw just how much energy simple things like having a shower sucked up. But it sounds like you have a good handle on that.