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.

@MewithME sorry you’ve had a shit day too. I wish people understood that work is hard for us as it is without any added pressure! Hope the wine helps and you feel better

@MewithME that sounds awful. I hope the weekend gives you some rest from it all.

Day of rest and relaxation here. Cottage is in the middle of nowhere and it's so peaceful. DH went to get provisions. A fire was lit, much tea was drunk, and we enjoyed tomato soup and bread for tea. V cozy 💕

Morning all, hope everyone can rest this weekend.
I am getting rushes of adrenaline waking me up in the early hours, which always happens when I have overdone things.
I think constant resting has helped this week, but I am wary of crashing again.

Morning all, sorry haven't been on in a while. @MewithME how did the ECG go? I've had a 24hr one before too and found it really uncomfortable having the things on under my clothes.

Been so busy here with little foster son here on respite the past 10 days hence my lack of engagement here! Really hoping for a quiet day today at home, potentially carving pumpkins at the dining table!

Hope everyone is doing okay and has a chance to recoup this weekend.

Hey @Realisation14 it was ok thanks after all the worry about it. I didn't get itchy but the nurse was good and gave me spares and said I could remove it if it bothered me.

I was a bit uncomfortable but not too bad. The downside was I misunderstood the instructions. She said to record any event by clicking the button and writing it on the sheet, meaning like a palpitation or something...then I realised hours later it was meant to record all my activities so it wasn't very accurate.

I think the ECG readings will be accurate but my visible monitor is much better for capturing the day to day tasks. Km not as worried about the palpitations as I was. They've reduced a lot. I think it's hormone fluctuations and food that triggers it.

I hope all is going well with your little foster son. Bless you all, I am full of admiration for what you do. Enjoy the pumpkin carving! 🎃

Nice to see you @Realisation14 ! Enjoy the pumpkin carving.

I am finally washed and dressed. It took ages for my oxygen level to rise from 83 to 98 and heartrate come down 120+ to 88. I am feeling quite disheartened.

As ever I feel guilty as if I've brought it on myself by doing too much, but I've hardly done anything apart from going for the flu and covid jabs in the last few weeks. TMI but gippy tummy as well, probably not helping.

I have been asked to find some colourful body suits for our little grand daughter as stocking fillers, so I am loving browsing all the wonderful choices. At the moment DD2 dresses her in floral dungarees and handkitted cardigans...she looks so cute! Not a frill or bow in sight.

So it's a nice distraction! Hope I'll perk up a bit soon.

Morning all, hope everyone can have a peaceful weekend. A quiet day here with maybe joining DH on the dog walk later but I’ll use my wheels today as legs a bit wobbly.

Hi @Realisation14 glad your little foster son is settling in and enjoy the pumpkin carving.

@MewithME glad you’ve got the ECG monitoring over with at least.

@TeaAndStrumpets I empathise with the feeling guilty and thinking you’ve over done it as I do this too, but it’s good to remind yourself it’s a fluctuating illness and absolutely not for your fault! You’re doing your bit by resting/ pacing best you can and hope things settle down for you very soon. The browsing clothes for your little granddaughter sounds like a lovely distraction 😊 I’ve been browsing online this week looking for Xmas/ birthday ideas too.

Thanks @Hotbeverageplease It is keeping me busy!

Obviously showing my age but does anyone remember Clothkits when they were actual cloth kits? I made loads of those for my girls.

@TeaAndStrumpets don’t think I remember those 🤔 but then I don’t have the best memory tbf 😂

My plan has changed to now popping over to MILs house for an hour. We’re going to take dippy dog so she can sniff around in their rather big garden so I hope she behaves and my energy lasts! That’ll be twice this week I’ve left the house so the diet overhaul is definitely helping general energy levels as think I’ve only left the house a couple of times in the last 2 months. Will pick DD up from her weekend job on the way home so will be quite the adventure for D dog!

@Hotbeverageplease that is amazing, very heartening! Hope your little dog enjoys a good sniff around.
DH is being a treasure and putting away the clutter round the house. He's just found the anniversary card I had got ready for DD1 and husband but forgot to post...oops. i'll just have to send it a week late! Really not with it lately.

Tomorrow morning is my best chance of the year to sleep in past 7am (because the clocks go back).
The downside is that I’ll take a while to get used to going to bed at new 10pm.

Afternoon all, am frozen. Sat in a fleece, joggers and electric heated throw over me. DH striding about in just a t shirt and boxers! Supposedly 16 degrees inside. Another pup went home today and we have another visit tomorrow. Our dogs busy stealing puppy toys out of the pen.
Got lots of washing to finish and put away, photos to edit and adverts to update. Everywhere needs a proper deep clean and carpet shampoo apart from ground floor/ puppy/ visiting area. Asked DH to help me with it all once pups go. Still need a proper deep clutter too and clothes sort out.
MIL fast asleep, managed to find a thick blanket type duvet which even she (so far) can't rip up and can be washed up to 95 degrees and tumble dried so a win win. Bought all 3 colours. @InMySpareTime thanks for the clocks back nudge - had no idea!
Hope everyone ok, love to all x

@Stressybetty hope things calm down for you after the weekend! Yes it is chilly. I don't know I'd cope without my hot water bottles. I tried a rechargeable electric one but it failed pretty soon, so back to boiling kettles!

Also appreciate @InMySpareTime reminder.

Roll on Spring!

Having thought through the time change it’s the other way from what I thought. The 6-something I usually wake up will be called 5-something tomorrow but I’ll definitely be tired for bedtime.

Just catching up on your messages, enjoying reading them. My mum used the Clothkits kits when I was little and dressed me in them so they must have been around in the late 70s as I was little then (late 40s now)

Went out for coffee with MIL, she is gone now and sitting in front of the fire. It was pretty cold out earlier. Even inside have pretty cold hands and feet (think that might be common with ME / CFS though)

We're away to Wales next week for half term, staying in a cottage. DS is bringing his girlfriend, and looks like we'll all be crammed in the one car as DS's has broken down (again)

Hoping this goes OK! Other times we have been to Wales for the October half term the weather has been dire so hoping this time we can get out a bit.

I'm a bit stressed about the cooking etc but just leaving it and thinking we can pick up some food shopping at the local supermarket and everyone can just make stuff or buy simple stuff.

So have a good week all, hope you can all stay warm and things go ok for all of you.

I have had the weirdest day of watching telly and dozing...so tired. It's been somewhere in between depressing and liberating!

DS with his Dad. All I have done is put a wash on, had a bath and rested. My body feels so heavy. I obviously just need as much rest as I can. I don't even have to eat. I'm considering either takeaway or not bothering at all. Both feel like a treat...I just don't want to do anything.

Yesterday just killed me.

That sounds like plenty for one day @MewithME you need to try and recharge your batteries (easier said than done) .You mentioned toxic people at work, that sounds like a layer of mental stress on top of the physical.
I hope next week is somewhat better.

Gosh 83 sats, I'm sure that felt horrible. Really glad it's come back up to normal range.

Didn't leave my house today, didn't get dressed today, did carve pumpkins, watched "a man named Otto" which I'd never seen before and absolutely loved, just so feel good. Pottered around the house, read a fair amount and children behaved like angels so really what more could you ask for on a Saturday in Oct? Oh I know what I'd ask for - no pain!!!! 🙈 But let's not get greedy eh lol

Morning all. I think with MEcfs this must be the best day of the year...guilt free extra hour to rest.

So glad it has coincided with DS being away. I have actually properly rested for once. Didn't sleep that well as I always wake a lot but I didn't get up when I woke up . Just lay there letting my body rest. .. put a podcast on to stop my brain thinking about stupid work and stupid people.

I've got terrible internal buzzing this morning..I am going to have another cuppa before I get up.

Today's priority is to change sheets in my son's bed and do some laundry. I managed a call with my mum yesterday so I can relax a bit knowing I don't need to fit that in. Sounds mean finding it a chore because I don't mean it that way, it's just a chunk of energy that's all.

It's a beautiful morning but I don't think I can give energy to doing anything outside today sadly. I will try and make some decent food. I got a gross takeaway last night. It was ok but semi regretted it.

I have a ton of small potatoes to use. My veg box comes from local farm and they're all tiddlers just now. Shame. All that peeling 🙈

I am going to make some soup as I have half a sweet potato ready diced to use up. Saw a recipe for sweet potato and apple soup.

I'm going to make another cuppa and catch up on your news now as I have missed a few posts.

Hi all,
Total rest on sofa all day yesterday, hoping for better energy today. HR 120 after getting up, oxygen 98 so not bad. Had breakfast, got washed and dressed, HR 130, oxygen down to 83 same as yesterday. After 5 minutes resting HR down to 80, oxygen has slowly crept back up to 98. So bloody sick of it all. I had this for weeks last year, had a chest x ray but was normal. It's just me. I know it can take months to claw back a bit of stamina, but I do despair sometimes.

Sorry for moan.

Sorry people are struggling, @TeaAndStrumpets those low sats sound really hard to manage. Are you anaemic?

we managed to get up to Scotland, I fill guilty being away while on long term sick but it’s good to be somewhere different. We stopped multiple times and there was a period where I could barely manage the pain, but lots of opioids and tens and the heated seat made it ok. We are staying somewhere we’ve been twice before, which made it feel doable. It’s almost all on one level, the beds are comfy and it’s so peaceful.

Today is my birthday and dh has taken the kids to an adventure park. They are sad I couldn’t go, but my energy and pain just wouldn’t allow it. we will have a takeaway tonight, I’ve got a tiny bottle of Prosecco and some alcohol free cider and we’ll play a game and watch another episode of celebrity traitors.

We got a supermarket delivery and dh and the kids got it in and away, which was miraculous. It was eye watering at £300 but it’s food and drinks for nearly all meals for a week and included £18 on a birthday cake!

I’m going to try and have a shower this afternoon, but no pressure.

Happy Birthday @FurForksSake . It's hard doing the celebrations I think but sounds like you've hit a good balance. Some virtual cake and flowers for you 😊

Happy birthday @FurForksSake 💐

We are also away and my watch says I walked 448 steps yesterday! Was between bed, sofa and kettle and I'm planning more of the same today.

The cottage is all on one floor, so no stairs - my nemesis. DH has always wanted a bungalow 🤣

We may be more adventurous tomorrow and go out. But I'm more than happy resting here in the quiet with wonderful autumn views 🍁 🍂 🍁 🍂