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

[MewithME]

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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 😁

Evening all, big work event done here, I feel like I've run a marathon when I've actually been in front of a computer for two days.

Stormy here too, horizontal snow this morning! Made it out for a walk round the block after work which was nice even though it was blustery. On the sofa awaiting takeaway which I'm not even sure I really want but should eat something or I'll fall asleep and wake up at a silly time hungry.

@Orangesandlemons77 your son shouldn’t be judging you for the painkillers you need. Sometimes we can’t function without them, it makes a horrible day a bearable day. Have you heard of pharmacy2u? They deliver medication so it might help you

@Oioiqueen hope your echo is out of the way now.
@Orangesandlemons77 you'll be glad to get your scan!

I must get over to distribute some Easter eggs for my grandsons. As usual I've got the ones with the absolute most chocolate in the box, it's Cadburys Dairy Milk again! I am told it doesn't taste the same any more? Sadly it is one of my many allergies but I have happy memories of when I could eat the good stuff!

Into my nightie and an evening on the sofa, an episode of The Other Bennet Sister, then a few hours on my kindle. I definitely need to wind down before bedtime.

@martha79 well done on the work event, you can relax now.
@JewelleryCat agree - that saying about wallking a mile in the other person's shoes is very true. Youngsters do tend to be very judgmental, it's probably because they think their Mum should be perfect !

Well done @martha79 on your work marathon and hope you can take a bit easier now.

It’s hard when meds cause other side effects @Orangesandlemons77 I’ve found a couple of meds have increased my appetite ( pregablin definitely!) and of course not being able to be very active makes things harder. I think teens/ young people can be a bit judgy sometimes tbh so don’t let your sons comment get to you. It’s hard for others to understand how the pain can affect us.

@Swanhilde yay for 2 weeks off and hoping your new line manager is one of the good ones.

Enjoy a chilled evening winding down @TeaAndStrumpets The other Bennet sister is on my next to watch list! Still on Bridgerton!

Hello everyone. I kind of hit a wall today. Some technical issues which were very difficult at work but figured it out in the end. I just went to bed this afternoon and had a big nap. Good decision I think. Still in bed and now eating gummy bears.

Evening all, Wow it's been busy! I couldn't catch up on all the posts.

Today has been spent getting rid of a big lot of kitchen items that I haven't used for a long time. So exciting! Such a relief and I'm glad someone could make use of it.

Very quiet other than that and had a cooks ready meal for dinner.

Yesterday started the first private psychology therapy session for my daughter. It was very in depth and hard going through everything we have lived through. Lots of trauma. She was lovely though and it lasted 2 hours even though it was only meant to be 1 hour 20. Sign of a good service.

Tommorow I have my own counselling so I think I will be emotionally spent by the end of tomorrow.

You have me craving gummy bears now 🤔

Oh you will enjoy it I'm sure! The book is very good too.

Not a bad end to the day!

@Tiredandwired2 that is a very good start, hope you gain some benefit too. But what an intense week!

I have decluttered so much kitchen stuff recently, i think it can be therapeutic too, makes you feel less overwhelmed by life. I certainly haven't missed anything I got rid of!

I would love to declutter. I think I'm saving everything for when my son eventually leaves home. I'm hoping those bits of energy spent on parenting can be applied elsewhere.

I'm absolutely exhausted tonight and feel v weak. For those of you who do visible, my pace point budget is usually 22. Today I used 3 even though I've been working this morning. HR been v low. Not sure if it's some sort of crash?

@Orangesandlemons77 how come your son is judging you for your meds? We all need help from time to time. I actually miss taking amitriptyline, it was wonderful.

@TeaAndStrumpets thank you, it's on Friday afternoon but I appreciate the sentiment.

Had to discard some of my dinner this evening, it tasted odd but I know that it'll be the chemo rather than there being something off with it. I know this as the creme egg ice cream afterwards tasted absolutely wonderful......

@TeaAndStrumpets I’ve been watching The Other Bennet Sister, haven’t read the book but been enjoying it on a Sunday evening

@TeaAndStrumpets definitely intense. The decluttering was the easy part. As you say it's therapeutic. It feels like a relief.

@MewithME Sounds like a crash just going off how you have been feeling. I can never get my head around understanding visible pace points. It drove me crazy trying to work out what everything meant. I hope you can manage to get some much needed rest

It's so soothing!

It really is, especially on a Sunday night. I feel so sorry for Mary but I do like how Hill was Mary in the 90s P&P (learnt that from the tv thread)

Checking in

👋 all

yes to gummy bears 🐻

I feel less fatigued muscle wise yesterday and today, getting up the stairs at work etc easier but still sniffling and coughing so feeling very tired from that and from working.

Still new to this so trying to make sense of the different forms of tiredness and pain and understand what makes them worse. Sitting at desk seems to cause upper back muscle tiredness, working for several hours makes me want to fall asleep and/or cry. But then I don’t sleep much/well so that figures.

At least it’s nice not to have that heavy weighted feeling in my legs just now.

can’t work out if it’s really fibro or me/cfs

Who knows!

@TheChicSnail I think we're like they say Eskimos have hundreds of words for snow but with tiredness/fatigue.

MEcfs isn't one kind of tired that's for sure.

And don't fall for the nonsense my GP says where she simplifies Mecfs as fatigue and Fibro as pain. I am in pain all the time with my Mecfs. I don't think it's the same as fibro pain. And I also get muscle pain, joint pain and neurological pain so it varies.

I know I'm really fatigued when I am taking breaks during chewing. Like now 🙈

Morning all!

A pleasant day but I'm on the sofa saving some spoons for a trip out tomorrow. I slept OK last night but my heartrate is up after my busy week

@JewelleryCat i used to be a bit snobby about the Pride and Prejudice book variations and thought they were just rubbish fan fiction, but a few of them are actually quite good. If someone is a good writer in the first place they produce a good book. I was put out when I realised the remaining episodes of the Other Bennett Sister aren't on iPlayer yet. Can't wait!

@TheChicSnail I 'only' have me/cfs but my neck muscles can tie themselves in a big solid knot and I get dizzy. Really the only thing that helps is massage at the osteopath when I go for my sciatica.

@MewithME you've said it all really!

Morning. Woke to snow on the ground. Ruddy freezing.
Dh brought me coffee in bed before he went off to work & I'm still snuggled under the duvet & heated throw.
Dd1 & dgd will be over later but for now I'm staying cosy 😊

That’s interesting- what do you think is the difference between me/cfs pain and fibromyalgia pain? Do you find heat helps?

@TeaAndStrumpets ahh a massage sounds amazing right about now!

Snow!

Last time we were predicted snow and everywhere seemed to get it but us.. DGS (who is a hormonal 12 year old) actually cried with disappointment! Hoping for a day off school building a snowman!