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 😁

I did check Google before I set off but it all just happened en route I think. Urgh. Thanks though.

@TeaAndStrumpets i actually felt sick when they put an implant in my hand to feel what it was like. I stayed flat and went back to doing the nursery run after 2 weeks with the pushchair and driving after 3 weeks. Couldn't have done with faffing around getting expanders pumped up or whatever. I was far too busy mumming. DS was six months old and it broke my heart not being able to hold him for a fortnight as it were.

You tickled me with your description of your DH at a watering hole.

Sorry about the journey, ouch to the fall, chicken is amazing, bathroom store sounds lnaxkering, well done all for holding on.

I worked every day this week and then went to hydro tonight which takes 45-50 minutes each way. I’ve got a tinny ache from too much soy sauce with ny sushi and I’m knackered. So much to do but I doubt I’ll be fit for much this weekend.

@TeaAndStrumpets no I haven't tried Arnica, never crossed my mind to be honest. My platelets are normal I think but probably lower than average. I think the chemo just makes me more sensitive to pain and repairing of bumos and bruises. I'm normally quite a hardcore get on with it person but I feel so tender and fragile nowadays.

@MewithME it does update in real time if that's any help.

I got caught out with roadworks today that google maps didn’t tell me about. And they look long lasting and not last minute so it should have known. The town I go to hydrotherapy in is a large market town and it’s always got traffic but this made it’s much worse. I’m a bit spoilt as the city (ish) I live in has lots of roundabout and I can go twenty different ways to get where I need to be.

Thanks, I will bookmark it after Google failed me. 😊

Hotel bed is very comfy at least. Nn all. Hope you all get a good sleep.

Morning!

Hope you all have a lovely day and don't go playing in the traffic if you don't have to.

Safe journey @MewithME and have a lovely catch up with your Mum.

Morning all

Hope you got a good sleep @MewithME and the journey is easier today.

Didn't sleep very well again, had some very busy and quite horrible dreams, my brain is definitely trying to process some stuff.

I've got a massage this morning, having postponed it a couple of times but I think I feel ok to go today. Absolutely no plans after that.

The massage sounds lovely @martha79 I hope you enjoy it

Have been to the allotment this morning and the sun came out ☀️🌱

Back now, in bed with ginger tea. Might carry on with my knitting or have a nap ... 🥱

DD is cooking chicken shawarma for tea, which I'm very much looking forward to 🤤

Have a peaceful Good Friday all 💕

Afternoon all ! Had a nice restful morning Hope everyone who celebrates is having a nice Good Friday 😊
@MewithME enjoy your time with your mum
@martha79 hope your massage is lovely and relaxing! @Swanhilde your day sounds like a good plan 😊

chippy tea for us tonight as is our little tradition and I have a plan to rest all afternoon and watch tv methinks- Have a nice peaceful day everyone

Hi everyone, hope we are all doing OK? @MewithME hope your journey goes OK and @martha79sorry to hear about your sleep issues. It really is the worst.

Finding it hard to be positive about anything today. I want to live in the countryside but I can't afford to move there. My neighbours' dog has separation anxiety so I've had to hear it barking all morning. I'm on week 3 of sick leave and feeling no better. I'm just burnt out, stressed, and fed up. Nobody cares either, family or friends. I know they have their own stuff going on but I tell people I'm off sick and it's just brushed off. I expect they don't really know what to say really. I'm tired of feeling trapped in life by an illness that nobody can find a treatment for. It all just hit me at once how completely unfair this illness is. I just keep declining over time and it's terrifying but for some reason everyone around me seems to think I'm fine being so limited and like I don't even want to live a normal life? When I do, so badly.

Sorry for the rant.

Today I'm going to hopefully finish knitting the dress I'm making for my niece and begin my stashbusting cardigan. Knitting is the last thread keeping me barely sane I think!!

You rant away @bedfrog it’s good to let it out especially when you are in company that understands, hope your knitting is relaxing for you x

Afternoon all.

@bedfrog sorry it's rough for you.

@Dozymoo42 enjoy your chippy tea. Lovely tradition 😊

@MewithME hope your journey goes well & you enjoy your visit with your mum.

Hooe you all have an enjoyable weekend.

Thank you I'm glad to have found people who get it, but I also wish we didn't have to!

💐@bedfrog it's so frustrating and it feels like people forget - I lost count of how many times I was asked what I was doing with the bank holiday weekend as if I was suddenly going to spring into action.

Massage was lovely! It's so windy out there though - it's only a ten minute walk each way but felt extra hard work. I've treated myself to delivery of lunch from a local cafe - nice Indian/ fusion sort of food and an iced coconut milk latte thing which has turmeric in and sounds very healthy. Expecting to spend the afternoon asleep once I've had that.

@martha79 same about the bank holiday plans! I must seem so boring as I never have plans (or that they're always "gardening and knitting"). The lunch sounds delicious, I miss proper curry so much since I stopped tolerating onions. I've just made myself some "sushi" (rice, tuna, seaweed wrap) which feels healthy and was delicious. Time for a lie down now though!

Don't knock gardening and knitting @bedfrog , those are my bank holiday plans 🤣

But, yeah sadly we all get it - be kind to yourself ❤️

I never have bank holiday plans or any sort of plans really. I’ve found I can’t really make plans even if I wanted too because I don’t know how I’m going to be from one day to the next

@bedfrog I can’t tolerate onion either, mostly onion powder but I can tolerate shallots if that’s also a possibility for you

@martha79 that lunch and latte sound absolutely delicious

@bedfrog rant away, that's what's nice here in that most of us are frustrated having to live the way we do. None of us choose to have conditions. In regards to the countryside is all of it out of price range? Our nearest town is actually more expensive than our village like for like.

People have asked what exciting plans we've had this bank holiday. Well nothing really! It's my week off chemo, the kids are off for two weeks and we are thinking about going away for a long weekend next week. Whilst I might be working I don't want to be spaffing money up the wall entertaining the kids every 5 minutes as at some point when I go on sick we'll need that money. People don't also get that I don't have the energy I used to and a morning out knocks me out for the rest of the day. Then I get suggestions of "take them to soft play" forgetting full well that a simple cold takes me weeks nowadays to get over thats if it doesn't give me a day trip to A&E on the sepsis pathway every single time I get a temperature.

Sorry, I lost you all you a bit, through a flare lasting almost a month. Improved a bit now...oh joy!

I have a friend ( lives a good distance off,so all communication is on WhatsApp) and she is so draining. Every message is about her health and what her fitbit is telling her. She never asks about me...indeed never contacted me once during my latest flare. It's exhausting. I'm slowing contact.

Quiet day here. I like having no plans. DH did a lot of cleaning and I lay in bed then had a bath. Now lying on the sofa.

It's a bit of a shame that the weather isn't great over the bank holidays for those with children or on holidays.

My teen took themselves to the gym and my other son has gone to stay with his girlfriend.

I got the teen to make me a coffee ☕ earlier. They can be a bit lazy. Need to get them trained up more.

I'm gutted about having to stop mounjaro due to getting gallstones. They've developed recently as well as previously didn't have any on a scan. Probably the weight loss although I was careful and didn't lose it quickly.

Because I'm not that active and short this means I'll need to be pretty careful going forward about not eating too much.

It's all just a bit depressing. I guess I will save money though as it's expensive.

Does anyone else find they need to limit looking at stuff on illness as it's too much sometimes?

It makes me a bit anxious. Probably due to some difficult experiences with the local hospital in the past.

I guess I am glad we do have the NHS though at least we don't have to be scared to call an ambulance due to the cost like in USA.

Had a quiet day. Yesterday was very draining and I think the PEM is kicking in. Sore eyes and cracked lips to add to the IBS, It feels as if my whole body is inflamed. I am feeling anxious about my cataract op. I really want to have it, just worried something will stop it happening IYSWIM. I will be ecstatic once it's over!