What are you up to today if you have chronic illness? Thread 3

[MewithME]

Link to last thread.

https://www.mumsnet.com/talk/_chat/5406424-what-are-you-up-to-today-if-you-have-chronic-illness-part-2

Can't believe we filled another one.

Hi @danglethedingle welcome!
@MewithMEhugs and hope you're feeling ok, no one expects you to keep up with the posts, just rest and recover xx
Love to everyone else xx

@danglethedingle you have come to the right place!

It sounds as if you have had a great day!

I have had CFS/ME for 20 years and it has worsened due (I think) to a couple of doses of covid. At the moment I'm in a severe crash, due as usual to pushing myself too hard. We've got our house on the market and have had months of being viewer ready and having several transactions fall through. I know strict pacing is my only chance of feeling better, but it's taking a lot longer this time. Last week I ended up in hospital with tachycardia but it was "just" fatigue. It's so difficult to control the adrenaline.
This is thread 3! @MewithME started a couple of threads ago but I managed to miss the first one.

Morning lovelies. I did too much yesterday and then couldn’t sleep due to pain and wired brain. So today I’m in a ridiculous amount of pain and can’t get around at all. Flu jabbed was cancelled, which is good as I’d have cancelled it!

Morning all and welcome to @danglethedingle that sounds like a good day, it’s just so lovely when you finally manage a better day.
Another one with a heart condition here and ME/ CFS for 20 years too which fluctuates but doesn’t really get better than moderate. Oh and a Fibro diagnosis just to add a bit of pain to the mix!

@FurForksSake aw no, that sounds rubbish. Sending hugs in solidarity from one sofa to another.
@TeaAndStrumpets the sea salt dressing gown sounds fab. I’m in a huge pink fluffy one from TK Maxx that’s a bit hideous but super cosy!

I managed a bath this morning and am still lying down recovering from it but it was rather lovely as I haven’t managed showers either this week. I’m still totally exhausted but the awful woozy feeling of yesterday seems to have passed 🤞Rest, rest, rest as my DS is home for the weekend tonight and I can’t wait to hug my boy as haven’t seen him since August.

@TodayIsatrickyone congratulations on having a bath!

More of a lick and a promise here, but I pulled some clothes on because DH is out and I don't want to horrify the postman. Heart rate 135 after getting dressed but coming down rapidly now I'm back on the sofa!

Oh how I long to have a wander round TK Maxx! Before covid I would often drive there for a quick browse, just checking what was new! They are only down the road from us but it would seem like a major expedition now. So Amazon and eBay keep me supplied with home wares. Not the same, though.

I am seeing friends in a week's time and am hoarding energy too. It will be so nice for you to have your DS home! I don't see my DDs very often. One is 20 miles away and has several part time jobs to fit round her family. The other lives 80 miles away and is on maternity leave so has come down a few times to visit with her lovely baby.

lol at the postman… I know that feeling! My DH is unusual in that he quite likes a mooch around TK Maxx so will often pick up bargains he thinks I might like and then return if I don’t. I think the dressing gown was such a purchase! Not quite the same as mooching myself but that’s a rare occurrence really and I need the scooter when I do which can be a challenge in itself and I have to feel well enough to use it in the first place!

@TodayIsatrickyone ours is very handy for saucepans etc. Well there is a Homesense nearby which is TK Maxx really. I have 4 small frying pans which I use (or did) for batch cooking small buckwheat crepes. I would get so tired standing over one pan with a bowl of batter to get through, I just needed to speed up the process! I can do 4 at a time on a sort of production line, but DH gets scared and will only do 2. So it takes him twice as long. They go in the freezer and can be reheated from frozen.

Thighs and pain much improved this morning. Made it to my community allotment session (took some ibuprofen before I left as a precaution) and I'm so glad I did.

It really is good for my soul, being outside with soil under my finger nails. I sat and did weeding / sowing while he others did the heavier jobs, but there is no judgement and it was such a lovely way to spend the morning. The sun even made a brief appearance a couple of times ☀️

Home now in bed with a heat bag and a cuppa. Will stay here all afternoon (while avoiding Traitors spoilers) and may have a nap. Leftover cottage pie for tea and then catching up on the Traitors final ...

Have a good Friday everyone.

@Swanhilde that must have been so satisfying! Yes it was briefly a lovely day so it was good timing. I thing leftovers are often better than the first meal ;-)

Another good day, I managed to go to Aldi with the help of DH, we got enough to keep us going for a while. What would I do without him? He's now doing our lunch while I recline on the sofa. I think that will be me done for the day though.

@danglethedingle you all set for the weekend now! It's nice to have a trolley pusher. My DH has learned all his household skills very late in life and finds it stressful at times but he is so supportive - I am very lucky.

I had the first session of the chronic fatigue course, it went ok a bit tired now so going to have a nap. It was the getting there and back- although most people had come further than me for it.

Hope all have a good day, just caught up on the posts.

What sort of things do they teach you on the course, @Orangesandlemons77 ?

I did a breathing one at our local rehab hospital and that was very useful. However, the room they gave us was at the far end of the building from the entrance and up 2 flights of stairs! Thankfully there was a lift but we were all shattered by the time we got to the room 😂

Hope that you find it useful.

Ahh glad the session went okay @Orangesandlemons77 It’s always a balance isn’t it between the energy used getting to something like that and the usefulness. Hopefully you’ll find it helpful. Rest well now.

Just pottered about putting some washing away and realised my heart rate was 133 so back to lying down here. It wasn’t that high last week when I was out on a short dog walk, very strange. I was lying on the bed doing nothing watching my Fitbit record it as active minutes! Ah well, more rest needed I guess.

There were quite a few things, it is a six week course, today was about acceptance, introductions and stuff like that really. I have some stuff to do for next week - of course ironically it is quite tiring but think it looks useful.

It's so odd @TodayIsatrickyone I find if I start the day with a low heart rate then all is well for me to do normal things, but if it's high on waking I can't do things even if I rest first. It's like I needed to have rested the previous day, then had a good night's sleep, first. Sorry not really making sense but basically I need to lie low and hope for a good day. I can't force it!

@Orangesandlemons77 hoping for tips!

@MewithME- I think all of us understand that we can’t always keep up with the thread so don’t worry about that.

I do try to read every post even if I don’t always respond but on really bad days I’ll possibly post just to get things off my mind and then disappear again to go deal with my shit. Sometimes it’s all you can do for yourself.

My left knee is being a proper twat today. Tried to get out the car when DH took it to the garage for a look at the brakes and nearly fell over in the yard because it didn’t want to behave. (I’d been to a nail appointment, lunch and a quick Home Bargains shop before that). Finally home again and going to put my feet up and hope it calms down again.

Agree @MewithME I know I’m new here, but don’t feel obligated to read and respond, this is such a lovely supportive place for whatever anyone can cope with.

@TeaAndStrumpets actually that does make sense about how HR is on waking. It actually was higher than usual today thinking about it.

I think it is certainly giving a clue!

Hello, I’m new to these threads. How have I not seen them before!
After waking up in horrible pain, it took me a while to realise I (somehow!) forgot to take last night’s medication, so I’ve been resting most of the day. Hoping to get out of the house tomorrow.

Thinking of you all. X

Great you found us @MaidOfSteel . A much needed thread!

Hey everyone. Feeling a bit lighter today. So glad it's Friday. I got some work done cleaning the drive and fixing my fence so I'm v happy about that.

DS is at his Dad's so I'm going to rest as much as I can this weekend. Just got an eye test to get through tomorrow. I'm sure I'll need jamjar bottom specs this time.

I should clarify...I mean I paid someone to do it...I didn't do it myself 😊

That would have been inspirational!