Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Thank you @TeaAndStrumpets . It'll be fine, just boring. More physio sessions start 10th March. Although still a "medical" appointment they are quite enjoyable.
Toddlers are their own little tornados! Adorable though.

@Swanhilde garden centre visit sounds enjoyable & useful 😊.

Good god I want to kill dh.

he spent his time at swimming with ds2 sending me links to peptides and then keeps telling me how I need to do aerobic exercise.

I have a physio and hydro team, my back ks wrecked and I’ve barely been able to move my shoulder since Thursday. My shoulder is still agonising from hydro and I’m wondering if I’ve got a rotator cuff issue, it’s been going on for ages and then stabilising.

DH was telling me how frustrated he is with the situation and that he should be allowed to feel frustrated and say that. I told him I found that upsetting and shitty seeing as I am the situation.

I’m sorry @FurForksSake that sounds very unsympathetic of him. Can I ask if he is usually supportive?

FFS @FurForksSake, I'm sorry. Of course he's allowed to be frustrated but I'm sure you don't need to be told that he is.

Yes, he’s usually pretty decent. His mum is dying so he’s got a lot on his plate and he’s just trying to fix things. But he doesn’t understand that he’s trying to fix things that can’t be fixed. They can be managed and I’m trying to do just that.

I think it is often the male mindset, wanting to fix things when you know it's unfixable. If you have a moan about your conditions, at some level he hears it as a plea for help, whereas you are actually only asking for emotional support. So he goes into problem solving mode. It's just a way of trying to control a part of his life.

I've had this with DH, but having him see the specialist with me was a great help for him to understand there are no miracle cures.

Oh God, yes, so very much the way that men are brought up, to try to fix everything. When there's no fix and you don't want one anyway, you just want them to be sympathetic.

I know my DH finds it very hard when things are out of his control (I don't mean that he's controlling, he really isn't. But he hates it that there are some things that he just can't do anything about). And if yours is like that, @FurForksSake , he may be in "fix things" overdrive as a displacement reaction to his helplessness in the face of his mum's decline?

I may be way off base in which case please do ignore me.

I will send you some very un-husband-ly sympathy, virtual hugs and maybe some chocolate biscuits?

I have made it most of the way across the country by train ready for tomorrow's work event. Medium sized meltdown half way through when my last and longest distance train, with its all-important seat reservations, was cancelled at short notice. Big enormous thumbs up to the customer service team at Avanti who, when I explained that I couldn't stand or walk up and down looking for seats on the next train to leave, accompanied me onto the empty train just before it went up on the board and ensured that I got a seat. I will write in and let the company know how well they handled it and how much of a difference it made to my day.

That is lovely to hear, what great service. Hope you manage to enjoy the conference!

@FurForksSake I feel your pain. No advice, but i understand

@CoffeeBeansGalore hope your infusion goes well today and that they canulate first time!

Hello to everyone else, hope you all have a good day

@CoffeeBeansGalore hope your infusion goes well today. I am assuming they cannulate into your hand for these infusions? I find them much more tolerable this way than when they go for a blood sample in my arm. I wish our unit had a TV in the wall or something with the news on for example. It's so tedious in there, I seriously don't know how people cope being in there all day.

I'm feeling wiped today, going to struggle with work I think. We hosted the in-laws this weekend and I think I'm just mentally exhausted by the effort of actually socialising. DH was a bit of a dick to me on Saturday evening (unusual for him) but last night I laid it out. That socialising whilst I'm run down and doing chemo with a dodgy thyroid is incredibly hard. Throw in a period starting this weekend and I'm just done for.

Thanks for understanding, it’s so important. He decided to move back into our bedroom last night (we had a row earlier in the day where he complained about the spare room and I reminded him that I’d told him months ago he could move back in). But he chose to do so immediately when I haven’t slept in three days as I’ve destroyed my shoulder and he was getting up at 5.30 for London. Gah. I was going to suggest we split it so that he sleeps in our room Wednesday - Saturday when he’s not getting up at the crack of dawn. But we survived the night and I didn’t kill him. My boys both got themselves up and I had very little to do.

my shoulder is still so painful that any thought of garden or pottery or even a walk are off as walking pulls. But hopefully tomorrow.

Thank you again for the support, I’ve not been very good at giving it out, so I massively appreciate it.

@FurForksSake this advice might not be great but with your shoulder, would voltarol help at all? I’ve never had rotator cuff so it probably won’t help

@JewelleryCat thanks, I put some on the other day but haven’t since. I’ll do that now, excellent nudge!

Glad you managed not to murder your DH in his sleep 😜 @FurForksSake ( my DH annoyed me yesterday too so I hear you!) and hope the shoulder pain eases so you can do something more fun this week.

Well done on getting to the conference @VikingNorthUtsire hope you cope okay

@Oioiqueen sounds like a busy weekend so hope you can rest at some point. Socialising is pretty exhausting but especially with everything you’ve got going on.

I woke up full of a cold which was annoying as early start today. Had to take out little rescue dog to the vets first thing be spayed. She’s very reactive to people/ dogs so we gave her some calming meds which seemed to do the trick despite her spitting some out. We can pick her up early this afternoon so I’ll be glad to get her home to recover. So quiet week wirh the dog here but then that’s nothing unusual.

Yes, I get the thing about men wanting to 'fix' things as well, I remember that with my bowel surgery / adhesions problem. Not easy.

Mine has been going on about stuff to do with the house renovations again (shared with the other flats) it is really stressing him out, have tried to listen and ask appropriate things but it is also quite exhausting and I need a break as well.

I have this appt next Monday for this thing in my mouth the dentist has referred me to on a 2WW and the hospital keep texting and emailing about it. I know it is just they want to make sure people go to their appts but it is a reminder of that going on as well.

Bit the Visible has given me a 'stable' score today so that is good. Still not out of bed yet though! Slept a bit better so maybe that led to the better score, and have not been doing much.

It looks a lovely day out, I wonder if it is warm enough to sit in the garden for a bit? might try that later.

Hoping for a good day for all

Afternoon all, hope you're getting a bit of spring sunshine today.

No partner here but plenty of other people who want to fix things and make 'helpful' suggestions. I like to think it's well-meant but a lot of it feels more about them wanting to feel they can 'do something'. I've had a lot of people asking their "other friend with long COVID" for advice, which can be tricky as it obviously doesn't manifest in the same way for everyone.

Mind you, I probably do too much researching and trying to fix myself! Having said that - I've joined the local ME and Fibromyalgia group (who now take long COVID people under their wing too). They've got some good resources and nice online stuff including a fortnightly singing group - I so miss singing in choirs, and am sure it would help except for the travel/ boiling hot/ freezing cold church halls, so maybe the online one will be good for now.

I've also had this book delivered today - https://amzn.eu/d/02SnqFYq - all of this is bringing up a lot of past stuff, lots of reasons why my nervous system/ body doesn't feel safe, and it feels like something to work through would help a bit while I wait to talk to the GP about next steps.

Having a relatively quiet work day today, had a little lunchtime walk, and am now lying in bed for a bit.

It's so beautiful out there!

I'm having a quiet day after visitors yesterday, really had the heart pounding last night. My burns have almost healed over, although still very unsightly. I had to laugh this morning. I took the dressing off my worst burn and panicked because it had a layer of yellow stuff on it, I then remembered putting some nappy cream on it last night! What a twit. It's fine!!

We watched the final episode of Small Prophets last night. Very enjoyable. I think it'll be Bridgerton this evening, rather a change of pace

I was reading a thread about the new Pride and Prejudice series and hope it's better than it sounds. Much is made of the lead actor being non binary, which to my mind has absolutely no relevance whatsoever to their performance. I mean does this person struggle to play a female? It's just the PR machine. You never have actors giving interviews about their struggles with halitosis or piles.

Oh I loved small prophets @TeaAndStrumpets so glad there’ll be a series 2 at some point.
I intended to start watching Bridgerton as everyone recommends it and I just never have for some reason. I really must do! Glad it was a false alarm re the burns 😀

My little dog is home, very sleepy and on crate rest so I was thinking I’d venture out in the garden as it looks beautiful but my early wake up to give the dog meds plus the 2 vets visits have caught up with me and I’m exhausted so I’m snoozing on the sofa listening to my audio book. Think I was worrying too as our little rescue is quite reactive to anyone she doesn’t know, but she was a superstar so that’s a relief. Calming meds obviously worked a treat.

I'm pleased your little dog is OK after her surgery @TodayIsatrickyone I hope she got some good painkillers. I'm not surprised your fraught morning has caught up with you - I bet you're glad it's over.

I hope you enjoy Bridgerton, it is pure silliness! The costumes are amazing. Yes I'm so pleased there will be a series 2 of Small Prophets, there are certainly enough loose ends. The neighbour lady (Sophie Willans?) was so good in Alma's Not Normal, as was the neighbour the other side.

Home from work, shattered, and in bed with a cuppa ☕

I don't know but Monday always seems to be the day that tires me out the most. It is the most 'bitty' day of my week with more moving around so that's probably it 🤷🏼‍♀️

It's been lovely and spring-like here today, so I'm going to have egg salad for tea 😎

Have a chilled evening all 💕

@Orangesandlemons77 Doubtless you you need a break from the stress! My DH is unbearable when he's worried about things, you can't help feeling it. It sounds as if the Visible device is working well for you though, so you know the pacing works.

Once you've ticked off the dentist visit that will hopefully lighten your mental load.

@martha79 I always hesitate to mention ME/cfs to people I don't know well. I have also had my fair share of 'helpful' comments. My cousin is forever sending me articles about it which I have given up reading!

The urge to research everything to death can be very powerful.

That book has some very good reviews, it can't hurt to give it a go.

Glad little dog is ok @TodayIsatrickyone - it's always stressful even when it's a routine op. Hope you enjoy Bridgerton, I didn't think I'd like it but I really enjoyed the silliness and the costumes and the observations about relationships.

Hope you can have a relaxing evening @Swanhilde - egg salad is a good choice for a day like this.

@TeaAndStrumpets I do like a 'course' to work through, makes me feel like I'm doing something constructive even if it may just be a distraction.

Feet up for the evening now!

I did a job today. It was dreadful. I’ve had a tu parcel from Sainsbury’s for ages. 20% off and blue light card so I went a little wild. Then ignored the parcel for several weeks. I opened it today as I was home alone. I’m keeping everything 😱😱😱 Sorry dh. I’ve lit it all straight in my wardrobe.

new Mac, two new work trousers, matching denim set, red checked cardi, two white T-shirts, an oversized burgundy shirt, two vests and a belt. Oops.