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! 😉

I've done a load of washing and got it on the line, and trimmed back a white cistus that was threatening to block the path.
And eaten a Hobnob. Milk chocolate. I kid myself the oats are good for me.

My OH is up a ladder doing similar, as well as scraping and filling. His knee's playing up but he thinks he can manage. It feels like the opening scene from an episode of Casualty unfolding.

I feel a bit guilty as I'm still stuck upstairs twixt bedroom, bathroom and study, but I'll try and get some freelance work done this afternoon.

IBS can be bloody awful, can't it? I think mine is probably IBS-M with vasovagal reflex syncope, hence the pain and face-planting (with accompanying injuries - my right arm still looks like I've got shark bites, so I guess that's permanent), but I still haven't found that magical diet yet to make my gut work properly. I gather, however, there are millions like us, probably losing millions of working days a year, feeling a bit fobbed off and frustrated that it's not taken particularly seriously in both primary and secondary care. ('It's just IBS. Try Buscopan and eat better ...')

Am waiting on a friend visiting. Got the doctors later. They’ve summoned me in because I have antibiotics too frequently. They give me them so I don’t know what they expect me to do!

DH bought me a desk fan as he didn't like to see me suffering in the heat.
I have just had to put it together ( DH is making biscuits) and think i deserve a sit down and a degree in engineering.

@MyAutumnCrow opening scene of Casualty or more like one of the old public information films. "Old Mr Strumpets thought it was fine to venture up a wobbly wooden ladder to remove some ivy "...followed by a dreadful cautionary tale.
He asks me to stand at the bottom of the ladder to help steady it but my main function is to carry a mobile phone. Silly man.

IBS, often the sequel to a bad CFS crash, just have to ride it out.

He's gone to B&Q now, god knows what for this time. It's next to Aldi so he's probably going to bring home some knock-off cornettos that I can't eat. I don't begrudge him though much.

😄

Busy morning for me went to docs for bloods and then was very proud of my little self as I walked further than I have for around 2 months to meet my DS for a lift home 😊

called to my mums for a nice cup of tea and now back home to rest for the remainder of the day .

Have a nice calm day everyone 💐

Afternoon all. Nobody up a ladder here! It's cooled down a bit, thank goodness. Feeling quite rough after too much heat and bread/ cheese/ ice cream (including Co-op knock-off cornettos) yesterday.

Have done local online gentle yoga class (mostly lying down) and am otherwise mostly lying down 😂

Hello poorly peeps! I've been catching up with your posts and have been sending ❤️ and as reactions...brain won't hold info in this week to comment properly. It's been ok this week. Better now it's cool but a week of juggling DS at home and deadlines for work has been a bit of a challenge.

I am off to the doctor's this afternoon. I need to ask (and fork out for) another letter to support blue badge application renewal. I am so nervous about getting it renewed. 😭

It's terrible really that the only thing I ask for is letters for work and for this kind of thing and yet I have to pay for it. I get nothing else to help me.

Work deadlines have been frustrating. Team have been super late which has a knock on effect but screw it. I'm not working the weekend because they're late getting stuff to me I asked for two days ago!

DS is off to his Dad's so I can have a proper rest later at least. Feeling quite weak still though slowly getting back to baseline I think after blowing my energy budget last week. Cooler weather helping there too.

Who was it mentioned Rivals? I started that this week. It's great fun. Enjoying the 80s but also feel it's a better looking version of the actual 80s. Though...the main actor guy is very weird looking. He's like a walking cartoon!

@MewithME I think it might have been me mentioned Rivals, yes the Rupert actor looks like Buzz Lightyear. It’s a good laugh and Danny Dyer is really unexpected in it

Thank goodness it is cooler today, I wasn't coping with that level of heat. Hope others are enjoying the cooler day too.

On the mindfulness stuff, I like the Calm app and I hear the Headspace one is good too.

I particularly like the Sleep stories, they just sort of ramble on with lots of detail and no drama, like a Train story for example, with sound effects sometimes and music, they are good for relaxing.

I have also tried Yoga Nidra which is peaceful. I once went to a Sound bath but found that a bit weird. Nice but somehow a bit odd, everyone seemed to take it very seriously and I found it hard not to laugh.

A friend enjoys Tai Chi but I have not tried that. I used to do a lot of yoga before ME / CFS and keep meaning to try something gentle but haven't got into it yet. Something like cat/cow for the back, or pose of a child might be OK!

Afternoon all, catching up on all your posts and sounds like most of us are appreciating the cooler weather.

Actually feeling a bit brighter this week and up and pottering more. I’m just in that frustrating stage though of not quite knowing how much I can manage without it making pain/ fatigue worse. I had a good chat on FaceTime with my mum who I haven’t been able to see lately so that was nice. Got a few bits organised anf ordered online for DH’s BIG birthday which is coming up soon including phoning a bakery to order a cake. My DD will have to collect it as I still can’t drive even if I felt well enough which I don’t!

On top of that I’ve just attempted to peg out washing for the first time since home from hospital as DH had popped to the supermarket and learned that even using my better arm, it’s really not a good idea. Arm is very painful now 😕 So resting now and painkillers taken and think that may be me for a while. But I couldn’t have contemplated all that a week ago so it’s still a win and I’ve learned that DH needs to carry on being in control of pegging out!

@Orangesandlemons77 there are a few gentle yoga or stretches specifically aimed at ME/CFS on YouTube that might be worth a look at. I just searched ‘ gentle yoga for ME/ CFS’
and several came up. The one I tried was Yoga, My bed & M.E’ which was some years ago now but there seem to be a few more around and for long Covid too.

I use the app ‘insight timer’ which I quite like. I haven’t tried sleep stories though so might give them a go.

Hey @MewithME sorry work is been a pain you defo have right idea resting properly this weekend it will be more beneficial for you 😊 and totally agree about it being better as it’s cooler !

@martha79 hope your gentle yoga was good especially the lying down part!

@Orangesandlemons77 I have the calm app and like the sleep sounds bit of it , there’s a sound bath near where I live next Sunday where you lie on inflatable mattresses in a lake - now I quite like the look of it but I am sure I would end up either A)Giggling or B) Floating away on said mattress 😂

@TodayIsatrickyoneGlad you’re feeling brighter this week! Keep pushing forwards slowly your doing amazing 💐

Having a restful evening as everyone else enjoying the slightly cooler weather ☺️

Why am I Wide Awake at 5am. I’m supposed to be going out this afternoon!

That is so annoying! Hopefully a power nap has now happened, and you'll sleep well tonight.

Up early for food delivery. We've toddler proofed the sitting room and found lots of things for DGD to play with...cardboard 'tunnels' for rolling things through etc. It's nice weather so she can run round outside.

I have been getting jittery and anxious the last week or so but only at the end of the day. I am wondering if it's my Prednisolone drops. I do try to block my punctum when they go in but I am very bad at it and can taste the drops in my throat. Only a week to go on those thank goodness.

I am going to attempt to blow dry my hacked hairstyle before our visitors arrive. DD2 tells me she wants the baby to remember me, so I'll try not to crack the camera lens😉 i just hate being photographed so I don't appear very much in the family album. Whereas we have hundreds of photos of my Mum roasting herself somewhere sunny, always with a nice glass of wine in her hand!

Morning all. I've had a decent sleep and it's a beautiful day. DS is with his Dad... I should be happy having a day ahead with nothing to consider but myself....but I'm a bit weird this morning.

I am all in my head about life and this illness.

I feel restless. Like I'm not sure what I'm meant to be doing. I know my body feels kind of weak but I think for my own sanity I'm going to have to do something today.

The house has a million jobs need doing but I don't want to/don't think I can, do many of them. Think it'll be laundry and a bit of a clean and then I'll need to rest as usual.

How wonderful would it be to jump in the car and head off for the day like normal people? Urgh. Need to snap out of it.

Do you do this to yourselves or is it because I'm on my own so much? Maybe life feels like it has more meaning when you are in a relationship.

I find myself trying to remember what Saturday mornings used to be like! I feel like I really don't remember at all. Just have this sense of "what am I meant to be doing?" this morning. I'll have some coffee and see if I can snap out of it 🙈

Hope you enjoy the nice weather @MewithME . Write down a list of jobs you want to do and put it in a drawer! It is nice weather for laundry, I would just do that then have a quiet sit in the garden. You have not been well so you need to rest.

Well I am showered and blow dried, gosh the drying is a killer. Only a quick blast and my heart rate shot up so having a rest now.

Nearly 2 months with no TV! Feels like Lent. I have noted a few shows I want to watch when I get my new specs, though. There's a spin off from For All Mankind, set in Russia. It looks amazing. Featuring Anna Maxwell Martin with her Stern Face. I love her. She was excellent as the MI5 interviewer in A Spy Among Friends. Also an Irish black comedy which looks good.

Admittedly not as relaxing as reading audio books!

Hope everyone has a nice day.

Hope you got back to sleep for a bit @ValleyClouds

Hugs to you @MewithME - I think it is easy to think about the illness a lot when you're on your own a lot. I often wonder what else I'm meant to be thinking about - I know it's better not to be constantly 'scanning' to see how I'm feeling and thinking about what that means for right now/ the future but it's really hard.

I felt ok first thing but am back in bed now feeling buzzy and wobbly. Stomach is not happy the last few days and that's really not helping anything. Going to try eating very plainly for a few days and see if it'll settle down.

Booked on an online gentle pilates class later, will try to do what I can of that. I get the recording anyway so can always give it another try on a better day. Meant to be back at orchestra rehearsal again tomorrow but I'm going to duck out of that, it took too much out of me last time.

@TeaAndStrumpets two months with no tv? I couldn’t do that even if I was told too I think. I like my tv too much lol, it’s my routine in a way with being autistic

I kind of like the idea of no TV but probably only in theory! It helps me stop ruminating so I will no doubt binge more Rivals later and some Apple TV! 🙈

@JewelleryCat I totally get that. My son is autistic and I don't restrict screen time as such. It definitely helps him regulate. I do notice when it's too much though and get him active when I can though. It's all a balancing act.

He did some ' gardening ' yesterday. He enjoyed chopping the shrubs back and hacked at the grass which is super tall. I may charge the strimmer up! I'm having trouble finding gardeners so maybe DS can help as he gets older. 😁

Ha you think that but you would find a way to fill the time I'm sure!

In bed with my coffee (as usual) and Spotify on. Have just eaten some kind of fortified porridge which was OK.

So glad it is a bit cooler and was able to sleep last night. Although had a weird dream I won't bore you with. Woke up feeling a bit disoriented.

Had a missed call from MIL on the mobile from yesterday. I sometimes don't check it and it was in my bag, needing charged. Don't know why she doesn't phone DH really. Oh well.

Got a 2 on Visible, I wonder if coffee affects it? I must remember to check it first thing before having some. MIL will want to go out probably but I will see how I am feeling. It is still quite hot out there too.

It's meant to be quite a change in the weather next week, rainy I think. Can't it just be nice / normal not all these extremes all the time.

Joined a local ME support group, well relatively local, based in the nearest city. They sent me a newsletter with lots of things ME related. I'm not sure I will make many of their meetings though as it is about an hour away on the bus / train.

Hoping for a good weekend for everyone

My DGS 16 is autistic and spends most of his time playing his guitar (or looking at guitars on the internet!) He gets obsessive about his music...can play piano by ear...but it is very calming. He is helpful with gardening but more brawn than brain sadly, will pull out weeds but also everything else in his path 😯