What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

@katystarI really hope you have made headway into getting what you need. The whole being admitted through A&E is disgraceful. I did just that 3 weeks ago (on my consultants say so) and it’s took 31 hours in the corridor on a chair to get a bed) I did get my IV steroids and some fluids during that time but it was completely inhumane!

I had the absolute best nights sleep! Was in bed just after 9pm, woke at 6 for the toilet, took my meds and got back in bed and woke at 8:45! That’s the first unbroken nights sleep I have had in at least a month.

I feel very weak and shaky again today though but thinking about it I only had one nutrition shake yesterday, rather than the 2-3 I’m supposed to have so I guess that may be it (my diet is currently very low residue so lacking in goodness) Think I’ve pushed a bit hard the last 2 days physically so intend to try and have a rest day today. Saying that, there are lots of things I need and want to do! God I hate that my body doesn’t play ball with my motivation!

Wishing you all anything you need today get through another day x

Well I set out for the allotment this morning but bumped into my old colleague in the chemist picking up my prescription beforehand. So I binned off gardening (even though it's a gorgeous morning) and we had a good old catch up over lots of cups of tea ☕☕☕

Things don't sound good at my old workplace and it was good for her to get things off her chest to someone who understands and knows the personalities involved. Once again I feel like being forced out was a blessing in disguise 😊

But it was so good to see her. We have put another date in our diaries for the new year. And I feel like I have done a good deed being a listening ear for her ❤️

Back at home now and in bed. No tea as I'm slightly awash. Present wrapping this afternoon 🎁

OMG @TeaAndStrumpets that's awful 🤦

I went for Christmas dinner with colleagues this week, the restaurant had provided a gluten free menu, I phoned them and discussed with the chef what could be adapted, everything confirmed, then when we turned up a different chef was on and was all oh no we can't do that harrumph.

I did at least get some plain boiled veg but.. 😭

What a lovely morning @Swanhilde ! I think the one thing I miss about barely leaving the house is bumping into people I wouldn't see otherwise. It does make you feel still connected to the outside world!

@MsWilmottsGhost oh no! I’d put in a complaint as that’s awful.

I had my catch up with my manager at work about my return to work. Looks like it might be February rather than January and I’ll have my stage two sickness meeting two weeks after I return. But it was a good chat and it’s done now.

I’ve managed to wrap dh’s Christmas presents, very pleased about that!

Sitting on the sofa, trying to get the mental energy to go and oil my sewing machine so that I can take some jeans up.

@MsWilmottsGhost thanks for understanding! It was the fact that I'd checked and double checked that made it worse. I wasn't paying but it was a shame the bride's mother paid for a meal that got binned. Also I didn't like to make fuss on a happy day.

With this in mind when DD2 got married I told her not to even bother trying to order me a meal because I KNEW someone would unknowingly cock it up! She asked the venue if I could plug in a rice cooker in their kitchen and I took cold sliced meat and a dressing in a cool bag. I plated up my food in the kitchen so I wasn't sitting at the top table with my tupperware...and the rice at least was hot. It was a lovely day!

@FurForksSake sounds like you are getting support at work.

DH's present is so heavy I actually ricked my neck taking it off the delivery man and hiding it in a chest of drawers. No way am I lifting it again! I have left it in the original stout cardboard wrapping and just stuck loads of Merry Christmas stickers on it, he can lift it out on Christmas Day!

@Nevertriedcaviar I sympathise! Maybe oil it today, hems tomorrow? I know it's frustrating not finishing a job there and then.

Oh you would be surprised. I seem to get one extreme or the other, so many lovely wonderful people who will bend over backwards to make something tasty, and then the utter wankers who seem to think I should just not eat at all..

I think that sounds like a good plan.

I don't mind bringing my own food to things, it's when people say "oh no don't do that, it's no problem. we will feed you" and then I get there and they are all pissed off and give me a single boiled potato, or give a big sigh and say "can't you just have a drink while everyone else eats?"

Are work being supportive @FurForksSake ?

I've had variable results from employers too. Current manager has been fab. Last workplace was crap..

Work are supportive, but occupational health are saying I won’t be fit for a January return and will likely need an extra month. I’m off half pay so I’d like to get back in and do a phased return. I work for the nhs and they are pretty risk adverse. To be fair I’m still in a lot of pain and getting exhausted easily post surgery and I’ve been off since June so it would be a pretty bit Bounce to get back so soon. Boss has asked me to put together a proposal and speak to occupational health about that and my access to work for support for a standing desk and special chair. But I’m not quite sure who does what and the magic words! I haven’t even mentioned using annual leave to drop to four days and then got down to four days (non working Wednesday) permanently. I’m hoping that’s an easy agreement.

Fell asleep after my last post! Forgot how exhausting talking to people can be 😴

Anyway, I have wrapped my presents ready for tomorrow, apart from sil's which needs sewing and blocking before wrapping 🧶

DD has been busy baking lebkuchen so the house smells lovely and festive. She's such a good baker but no good for my waistline or sugar issues 🤣

Caesar salad for tea (again from DD) and then telly and bed 😴

Have a peaceful evening all 💕

I agree with @MsWilmottsGhost , @TeaAndStrumpets . OH reports were used against me every step of the way by my old HR dept.

Take care ❤️

My advice would be don't use your annual leave for disability cover. I've don't that before, it seems like an easy fix in the short term, but isn't good if your condition is long term. It gives you employer no incentive to find a solution, they will expect you to carry on using it until all your leave is gone, and then you are exhausted with no holiday..

Are you in a union? Or is there an equality and disability advisor? Large organisations like NHS trusts should have one. They can help with wording reasonable adjustments applications etc.

Yes people are exhausting! You are doing well though, well ahead of me on the present wrapping 😬

There were only 3 @MsWilmottsGhost so don't be too impressed 🤣

(DH does the bulk of them for the kids, I just do my family ones.)

Evening all.
@FurForksSake agree on getting union involved if you haven't already. I found our union to be pretty useless (i.e they didn't do or say anything I hadn't already done or said then didn't push back on anything) but it helped work take more notice and was nice to have some support at least.
No wrapping getting done here, got MIL some more silky scarves which she loves folding and finds comforting. I'll slowly incorporate them one at a time. Me & DH have spent loads lately and agreed not to buy presents for each other.
MIL fall/crash mat arrived today so me and DH need to move and then lower her bed.
Have an itching to go out tomorrow and browse the shops and get a few things, probably will be heaving and a very bad idea.
DH is going to hit m&s food to get the turkey and cheese etc, he does the majority of the cooking and I'll just feel overwhelmed and panicky thinking we need everything!

I have been weary all day, funny how it strikes seemingly out of the blue then you think back and realise it's from overexertion two days ago.

Had a long tearful call from DD2, they've all been ill and the poor old dog has had to be PTS. I was very sympathetic but offended her by a flippant remark which was well meant but fell flat. Oh dear. DD1 and I both have a wry sense of humour but not so DD2 - she takes everything deadly seriously. Now I feel awful but hope I will be forgiven in time!

Christmas wrapping done, last cards posted, Christmas shop arriving tomorrow.

Book sorting going well for me, DH has kept dozens of books in case he wants to read them again. I could scream. I have been very good and got rid of absolutely loads of my own books, but he will hang on to his like grim death.

I had a lovely meeting this morning with a lady from the MCF (masonic charitable foundation) to see if they can help with daily living costs and possibly the cost of a mobility scooter. Then my husband took me food shopping and we are now sat in our armchairs watching telly.

That would make such a difference @ToadRage , I hope you get some help.

I go to a knit and natter group on a Friday, and today we had a Christmas Party. Just snacky things and mulled wine ( I had cranberry juice. I cant drink). Its the first and only Christmas thing Ive done this year. We wwre goubg to a Lantern parade last week but i wasnt up to it.

Have managed to wrap the small pile of presents we are taking to DS's on Christmas Day. Cant wait to see Harry Potter mad DGD's face when she opens the Diagon Alley Book Nook we have got her. She is a real bookworm.

Have had a shower and in fluffy dressing gown and slippers now. DH made sausage and mash for supper with pork and cheese sausages. Cant say I liked them but its alway worth a try of something new. He gets them from the village butcher. We have had lovely beef and mustard ones from there.

Now sat watching 90's Top of the Pops on BBC4. Its our usual trip down memory lane on a Friday night. Its the time we met and brings back lots of lovely memories.

@Megsdaughter that sounds lovely, I agree about the music, sometimes I find myself with a song in my head from my teens. I think it embeds itself more at that age. DH and I met when we were 18 and 17! Good job we still get on :-)

Your DGD will be excited by her present. Our little DGD is 11 months old and absolutely loves her books! Harry Potter in a few years I'm sure. At the moment her favourite is The Elephant and the Bad Baby.....which goes Rumpeta Rumpeta Rumpeta all round the town! A hand me down from when my girls were young.

In bed and asleep by 9 after an early start for the MRI followed by an unexpected trip out with my daughter then a train into the local city to meet ex colleagues for cocktails, Christmas meal and Secret Santa. Only 6 of us who know each other well so it's lovely still to be included post retirement.
We met at 2 so safely on the train home by 8 and it still felt like a late night🤣🤣