What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

Sorry @Adhdmum2 . Sometimes I am grateful I'm single and it's just me and DS. It's worrying having no help but then having a partner who doesn't understand must be so so hard.

Sometimes it's worth it! Glad you had a walk and at least you'll have a reason to be fatigued.

Sympathies @Adhdmum2 it never rains but it pours! It's annoying when things are broken, but not your fault! You are obviously much relied on by everyone around you. Hope you get some rest.

Hi everyone, I drop in now and then, but am.a name changer.

I'm waiting to see if my new rheumatoid arthritis medication kicks in, and if it doesn't, I'm looking at early retirement

Only 58, and not really ready - financially or emotionally. Any advice gratefully recieved.

I always thought I'd have a very active retirement, so need to rethink what I'll do with myself.

Thinking of you and your family @FurForksSake it’s a difficult time for all of you and tea&strumpets describes the surreal feeling well, of waiting for the inevitable whilst the world carries on around you. I hope your sons are as okay as can be.

Too many posts to reply to all but sorry for those who are struggling one way or another.
We've been up to my MILs house this morning she’s going to have our little rescue dog while we are away in July but little dog still anxious with people she doesn’t know so we really want to try and get her used to being there. MIL spends a lot of time abroad and hasn't been around much and when she popped in last week, the dog didn’t seem to know her and was quite reactive so we really need to get them used to each other. It was lovely actually as we sat in her garden and the sun felt really warm and after some initial barking, the dog was fine and had a lovely time exploring everything.
I then fell asleep this afternoon and still feel shattered. Just been musing with DH about why just sitting chatting in someone else’s garden is so tiring. I didn’t drive, wasn’t physically active, wasn’t stressed and only talking to one other person and DH. It still surprises me that it uses so many spoons! Ah well, such is the weirdness of ME/ CFS!

Thank you ❤️ @MewithME dh sent me to bed at about 5.45 in the end but then let kids come and jump on the bed and shout at me at 6.30 after id just dozed off. Now sitting with DD age 5 while she falls asleep because she "needs her mummy". It'll be meds and bed asap for me! I find it so hard to settle with the pain sometimes though my muscles are almost screaming at me!
Sorry I'm being a moaning myrtle today lol but it's been a rough weekend for me. Hopefully things perk up through the week.
Kids will be off for Easter at the end of the week though and I'm on my own with them while dh is at work so I struggle through the holidays. Look forward to the fun with them and the funny things they come out with but it'll be two weeks of bed as soon as she is home to rest before the next day. Thankfully there's a new Mario movie in the cinema during the holidays and that's easy peasy, I can sit and eat popcorn till the cows come home!!

Moan away @Adhdmum2 . You're allowed. Hope you get a good sleep.

Nice to see you even if in disguise! It must be difficult thinking about potential retirement but it would be awful juggling work and pain and potentially making yourself worse. I imagine it's the uncertainty that's upsetting. Hope you feel better soon.

Sending sympathies @Adhdmum2 I remember finding holidays so hard when mine were young. I look back sometimes and wonder how I did it. We did a lot of movie afternoons I think when I couldn't get off the sofa. I remember my youngest used to bring her toys into my bed bless her and just climb in with me.

@Adhdmum2 you'll get through it! Your garden will be looking great with your assistant gardeners. Do you have some good outdoor toys? It tends to be easier over Easter as I recall. Fingers crossed for dry weather!

@TodayIsatrickyone your little dog sounds quite a character, she has time to be more relaxed with your MIL. Maybe she can be the treat lady every time she comes?!

Talking is so tiring, me or others, it is lovely at the time but it does catch up with me.

Morning all!

Doesn't look too bad outside. We're waiting for the tree surgeons to come and tackle our very tall hedge. It's worth every penny! DH is unsteady on a ladder due to his dodgy hip.

I'm off to see the consultant about my cataracts this afternoon. I hope there aren't any problems. Ever since I realised my eyesight was only going to get worse I have been very keen to have the operation. I had a choice of ophthalmologists from the private hospital web site, I read all their CVs and experience then chose the one with a friendly face!

Morning. Dull but dry here currently. Been awake since 4.20am thanks to dh & ddog snoring in chorus.
Good luck with the appointment @TeaAndStrumpets .

Stereo snoring! 😂

Fingers crossed for your appointment @TeaAndStrumpets

Awake since about half four too thanks to falling asleep early, and the dawn chorus, and the cats...

This week I have the bizarre task of running our work conference while not actually being there - there is an online element so I'm helping with that and otherwise hoping everyone on the ground can follow my instructions and not ask me too many questions (unsure about that last one, it's only 8am on Monday and I'm already fending off a lot of questions).

@CoffeeBeansGalore should have added, thanks for the good wishes! My knees aren't exactly knocking but I am a bit phobic about hospitals, doctors etc. This is definitely time for my big girl pants.

Edited for spelling unless hospirtals is a new word!

@martha79 that sounds full on, I suppose you can dress for comfort at least?

Absolutely! And I'm on my sofa currently instead of on a train, which is nice (by nice, I mean necessary, absolutely no way I was managing that journey and being any use to anyone afterwards).

Hi everyone, ive posted on here before but have changed my name a lot!!
Ive got M.E and am currently going through a relapse, the cause of which I have no idea. Dh booked us a lovely holiday in the countryside but I could barely so anything but sit and watch the birds outside and I'm now signed off from work because the tiny walks I managed sent me into a flare.

I feel so hopeless- I had covid 2 years ago and was terribly ill but recovered well after about 9 months, then now a year later I'm going downhill again. I worry I'll just get worse and worse now. This illness is just evil.

No kids, probably none in the future either. I've had to accept the grief of that too. It feels so unfair.

So anyway today I'll probably just be knitting in bed, watching too many youtube videos, and might make it downstairs to look into the garden later.

I'm thinking of getting a visible wrist strap. I use a fitbit but it doesn't give me HR notifications. Wondering if anyone here has found the visible strap helpful?

Morning all and welcome back @bedfrog . Sorry you are struggling. It is an evil illness and one which is very hard to feel hope with at times.

I have heard a few people say they did better in pregnancy with their MEcfs but certainly coping with a baby is an energy demanding task. I'm very sorry if you feel this is not going to be a possibility. It's grief you're going through. I think we all grieve the life we had when we have this illness (and other chronic illnesses too I'm sure).

I'm working (from home thankfully) today. Feeling rough but grateful to be at home.

Just checking in.

@bedfrog sorry you are having a bad flare. I know the feeling of being ok, thinking you’ve had some kind of recovery and then relapsing again. It’s horrible for mental health. I haven’t tried the visible strap but would be interested in hearing about it too.

Hope everyone gets on ok whether working from home or seeing the dr!

It is my day off work today although I do see a couple of students online from home today. Still recovering from my month long cold/cough. Body feeling very achey and legs feel heavy when I walk. Trying to be patient, allow myself to recover from muscle fatigue before trying to introduce some walking in my day again. Not very good at waiting I’m afraid.

Sorry totally missed your post! Welcome and hope you soon feel at home.

It will be great if you get some iron in and feel a bit more human. I remember feeling like a zombie when I was anaemic years ago. The worst bit for me was feeling unable to advocate for myself.

Hope you enjoyed getting out!

Welcome @rainraingoaways

ive been to hand clinic, I now have splints, exercises and need to buy heated mittens ☺️🤣

I went to Morrisons and managed a little walk around. I’ve got an ecg at 2.30, and then I can rest until dinner. I’m so so tired.

That's a full day! At least you get to lie down for the ecg, although stripping off is a faff.
I've got the dentist followed by the hygienist tomorrow but that's it for 12 months (I hope.)

Welcome to @rainraingoaways @bedfrog @TheChicSnail and anyone else new I’ve missed.
I always think a bad flare or going backwards after a better spell really is the hardest thing to deal with, so many emotions to work through.

Well I made it to the hairdressers this afternoon. Rested all morning, DH dropped me at the door and straight back home to rest again and I’m still worn out! Probably as I’ve known the hairdresser many years so we were chatting a lot but it was nice to catch up and my hair feels a lot lighter and better for a decent trim!

Hope your appointments go smoothly @TeaAndStrumpets and @FurForksSake