What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Morning all!

Dragged myself out of bed today. Still feeling exhausted and breathless. I am always incredulous that having a few sofa days isn't an instant fix! Ever the optimist. I am frustrated because I've got SO much to do but after landing myself in hospital know I have to rest and rest. I would say my energy envelope is wrapped around me like clingfilm!
Anyway I remembered about the vagus nerve and did some humming while I got washed and dressed. I'm alone all day today so I can sound as daft as I want lol. So I've had a few choruses of Onward Christian Soldiers and Old Man River. Still feeling feeble but it's cleared my chest a bit.

I hope you all have a good weekend.

Morning! Driving back home today, 10 hours in the car or more. But we are doing well and are nearly.

That's a mammoth journey!

Good morning everyone, I made it through work yesterday (managed to find a quiet spot for a nap between sets too which really helped).
Went to bed at 9.30 and had a decent sleep so have hopefully averted a crash this time.
My concern with the PIP changes “to help disabled people into the workforce” is that it put the cart before the horse.
Firstly, PIP isn’t an out of work benefit, that’s ESA. Secondly, you can’t starve disabled people back to work, you need to start with making employers create disability-friendly work culture and workplaces so disabled people can find suitable work and keep employment through fluctuating care needs.
It stems from the assumption that all disability is visible and stable, but many disabled people could do some kind of work sometimes and there’s no scope in the system for that.
People trying a bit of work when their symptoms abate get penalised rather than incentivised, and risk financial ruin when their symptoms flare but they have lost their safety net because of previous employment.
It’s not a quick fix, and will require a lot of detailed negotiation with employers, DWP, disabled people and Educators to build a culture that enables disabled people rather than the current binary system where you can either work full time with no adaptations or you cannot work at all.

@InMySpareTime those are good points. I don't know anything about disability support but agree there is such a lack of joined up thinking.

One of our friends has a mentally and physically disabled sister (CP and very deaf) who years ago had a job at Remploy which made furniture. She was able to get there on a bus and loved going there. The Remploy factories were closed a few years ago and she really misses her friends from work. The point about the factory was, it was a proper job, not some sort of day centre. She is past retirement age now and thankfully goes to her local church where she can socialise.

There must be people who can't work but would love to.

BTW Remploy furniture is now collectable, it's very well made!

Absolutely agree with this. I am getting closer to being able to sustain some part time work now my health is getting more stable but the difficulty I will have is finding an employer who will consider reasonable adjustments.

I left the NHS after 11 years of service. I am so disappointed and shocked with the lack of ability for my employer to provide reasonable adjustments and in my case my efforts to advocate for these reasonable adjustments with hardly any progress cause a crash that lasted around 6 months. I left because they were not going to make the appropriate changes without further work from me which I just could not do.

I am dreading the risk I may have to take with my health to find suitable work.

Been to the pharmacy, to collect a prescription. It was pretty busy with a queue.

Man in front of me was collecting a prescription of medical cannabis "cureleaf' I noticed it was quite expensive, £48, for it, it was an oil.

then another man tried to take my bag as he thought it was his, he had been waiting a while and was getting a bit cross.

Bit sad that the event of the day is the pharmacy gossip, haha!

I will be going out with MIL later for coffee as well, I got my letter from the CFS clinic and it said about having to stay in bed for a day to recover after that!

Hope all have a good day. It's sunny out, anyway here for a bit.

I completely understand the worry about work. Mine is often too much but I can't just not do it. I think it's much easier to get adjustments when you're in work than finding a new job and asking. I can imagine disclosing that at interview isn't going to be good and disclosing after will go down like a lead balloon in some places.

There are some employers that list themselves as disability confident but I'm a bit cynical about that.

Anyway, I am up and dressed. Jacket potatoes in oven. Low effort to cook but give me awful palpitations after and I need to pop out this afternoon 🙈

The sun is shining but some dark clouds around.

I'm still relatively cheerful though. Managing to switch my head off from work for once.

Sorry about my rant about work. I have just seen a lot about it lately and it triggers me a bit.

@MewithME I am so glad you are feeling cheerful. That's wonderful.

@TeaAndStrumpets Sorry your still going through it with your health. I really hope it stabilises for you.

Managed to get a few house things done. Had a tuna salad for lunch and going to take the dog for a very short walk and then pop to my sisters. It's my nieces birthday today so will be dropping off card and present.

I had no trick or treaters again this year. I wasn't going to get any sweets in but did a last minute dash to the shop just in case. I may have eaten some of the sweets and chocolate. I will regret that! I have no self control lately.

Tonight will be homemade pizza for dinner. I have to make it very very slowly. Maybe a film this evening but plenty of rest.

I am amazed by how much I am getting done lately without pushing myself into a flare. I need take stock and remember to be grateful.

@Tiredandwired2 you can rant about work. That's fine. Let it out.

There's plenty to rant about.

I’m home alone again this weekend as DH & DD are at another uni open day. I’m not feeling too bad today so quite enjoyed the peace and just pottering about in my own time.

I’ve managed a very short dog walk in between rain showers which I enjoyed and have lit all my candles and lamps to make it cosy.
Ordered some nice snacky bits I can grab from the fridge so I’m not cooking and looking forward to Strictly!
I’ve finally got my PIP assessment ( 15 month wait!) on Monday so I know I’ll crash after that so trying to make the most of a better day. Trying not to think about it but it does keep sneaking into my thoughts!
Hope everyone is having a peaceful weekend.

Sounds very cosy @Hotbeverageplease !

I also spent the day by myself not doing much. The delivery chap handed me a really heavy parcel and I'm sure I've pulled something! Had to go and hide it as it's DH Christmas present. He has so many motoring books - they keep him busy for hours and he gets a lot of enjoyment from them. But they are all huge!

I got some baby stuff too, so granddaughter's presents are done now. Just three grandsons to do next! My aim is to have everybody's presents bought this month, then get DH to do the wrapping. I always feel pressure at Christmas so do it very early.

I keep hearing fireworks, so I reckon a few more nights of noise to come.

Final episode of Leonard and Hungry Paul to watch then back into my book for a relaxing evening.

@TeaAndStrumpets you’re doing brilliantly on the Xmas gifts, well done. I’m the same, I like to buy early and DH and I generally wrap together in stages! I’m not very organised yet though, I may do some browsing tomorrow morning before the family arrive back.
I say I’m home alone, dippy dog is such a lap dog that she’s on my knee or legs every time I sit or lie down ( a lot!) so she’s quite comforting especially on rubbish days! Hoping we don’t get too many fireworks as she’s apparently not a fan but Ive got calming plug ins plus a calming collar so hopefully they’ll help a bit.

Hope the PIP assessment goes OK. It can be about an hour or two I think. Yes good idea to rest after that one.

Hi everybody. I'm not at all up to date with the thread as I've had a lot going on (a very dear friend has MND and is approaching the end) and haven't felt like talking about real-life stuff, but I thought I'd put my head round the door. Hope everyone is doing OK.

Ironically I haven't been doing too badly physically. I think it's because the mental stress and upset are sending me soundly off to sleep at night, and I'm sure we all know how big a part sleep plays in managing chronic conditions. Mentally of course things are less easy at the moment, but such is life.

Wishing everyone a peaceful Saturday evening (early flipping fireworks aside, we've had loads round here, the cats are hating it! 😬).

Thanks @Orangesandlemons77 I was quite unwell after the last one. Part worry & stress, part. concentration I think. I limit any visitors/conversation to an hour but obviously no choice in this case. I’m trying very hard to keep myself calm and just think how relieved I’ll be when its over.

@ruethewhirl so very sorry to hear about your friends’s illness, that must be incredibly painful for you.

Evening, we made it home. I had a cry before we set off as I felt very useless not being able to help with packing or driving. But dh and the kids reassured me and we made it. I’ve had lots of painkillers, my magnesium and my cbd capsules so I’m hoping I’ll sleep.

I work for the nhs and am on long term sick with chronic pain and waiting for surgery. I aim to go back in January. I left the nhs 15 years ago due to back issues and went and did lots of other things and have gone back in a very different role but clinical still (totally different type of clinician from before, I work in kids mental health in the community now). I’m hoping the phased return in January, reasonable adjustments and dropping to 4 days a week will get me some more years in work. I’m 43 and I’m aiming to get to 50 before I stop. I’m planning on dropping Wednesday and that worked before. I had to change when i had trainees, but they’ve qualified now so it should be doable. Having the mid week rest works and I hope it will keep me going.

I don’t even know what reasonable adjustments to ask for, I’ve had a chat with access to work but they’ve can’t speak to me until I return to work. Most of my issues are pain and physical and then cause fatigue and brain fog. I’ve been off so long I barely know how I’ll go back.

Thanks, yes it’s tough at the moment, especially now he’s in such a bad way. Such a terrible disease.

@FurForksSake when is your surgery? It must be hard to cope with constant pain. You have done so well to manage a holday for your family. Hopefully this time next year things will be great xx

Holiday, brain not working this morning.

Left to my own devices yesterday so I pottered around, made cups of tea filled hot water bottles etc. Heartrate up again today so need to pace myself . Very boring. I really need a shower!

Oh it really is, have seen it a few times. Xx

Morning, it’s a gorgeous looking autumn morning in the Home Counties. Missing Scotland and the coos though.

surgery is on 14th, so a week on Friday now! I was explaining to DH that while it will hopefully fix my right hip it won’t fix all the other bits and we need to be realistic. I’m hopeful it will let me do some more exercise and get my mental health better.

i am so hopeful it works, the six weeks on crutches will be nothing compared to what I am managing now.

i slept fairly well surprisingly, back on my sofa with my pillows is helping a bit. Dh is buzzing around, he likes to tidy and sort. Kids haven’t emerged yet, leaving them to it today.

Shopping is coming in a couple of hours, I need to do my Christmas food prep this week and make the Christmas cake for my mil. I’ve also got to try and assess stockings and the advent chimney contents to make sure we are covered.

We are also home. Spent yesterday in bed resting. Today I will begin to tackle the washing. Shopping delivery at lunchtime - DH will deal with this.

Only other plans is to have a shower and wash my hair ready for return to work tomorrow.

Morning all, up usual time, fed and cleaned out pups, fed dogs, washing up and quick tidy round. Am back in bed now DH is up. Was going to do monthly Lidl shop today with 10% voucher but too tired, not in right frame of mind and it'll be busy. Will take an afternoon off instead. Busy day yesterday, 4 pups home and a deposit left, 4 to sell. Feeling rubbish from flu jab. Going to hopefully rest this afternoon.