What are you up to today if you have a chronic illness? Thread 5

[MewithME]

Here we are again. 😊

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5458553-what-are-you-up-to-today-if-you-have-chronic-illness-thread-4

@Realisation14 I am wincing just reading that. What an awful thing. Hope you can get it sorted v soon.

@TeaAndStrumpets I have joint pain all the time tbh. I guess some days are worse than others.

When I'm in a crash, I feel v weak and have had to rest while peeling a satsuma or only do a couple stairs at a time. Opening packets can be tough.

Weather has improved but my energy hasn't. I won't be going anywhere today. I have had some awful dreams this last week. Last night's just made me sad. I dreamt of my grandmother's house and was planning a visit. Woke up in that fuzzy in-between state of not quite awake and thought about it then remembered her house was sold 20 years ago.

I had a bit of an upset with my sibling yesterday. They are planning a trip from where they live (a long way from me) to somewhere 1.5-2 hours away from me. They want me to go stay the weekend in a hotel and meet up with them. They just don't understand that my weekends are spent in bed resting mostly. A happy/doing well weekend for me is maybe a lunch out to somewhere max 20 mins drive away. If it was when I'm not working it might be doable but not when they're planning to come. My dream was probably about that in some way.

@MewithME that sounds difficult. I can see many reasons why you would prefer to be home in your own bed. And the chatting is so tiring. What sort of hotel is it? Are there extra facilities like treatments available, nice gardens etc or is it your basic holiday inn type of place? It really depends if you feel able to relax while you're there.

I often dream about my Mum who died many years ago, and several of our friends who died too young. They just sort of pop in casually. With my Mum it's often set in a railway station because she would pop over to see us and I would meet her. She was very keen on travel and was forever jetting off on holidays, but in my head it's the train journeys I remember. I think it is quite symbolic.

I'm also a bit of a wreck this morning because of a dream. I very rarely remember my dreams but I was dreaming about lying in bed with my OH just cuddling and chatting about nothing for hours. Waking up to a cold empty bed was rough.

It's coming up to the two year anniversary of his death in a few weeks. I had a lot of nightmares in the run up last year. I'm not sure if they were worse compared to this honestly.

I've spent the last two hours getting showered and ready for my usual Sunday visit to my mother's house. I've not been able to work for a few years now so this is the only time I tend to get to leave the house and be social on a regular basis so I don't want to not go, but I'm also really not in the mood.

It doesn't really depend on any of that tbh, though I know those things sound nice, and it's not really a preference.
It is about me not having the energy to do it at all. Drive for 2 hours. Spend time eating out and talking (and they are very opinionated and not easy going). Packing and unpacking and Lifting my bags and walking around the hotel and probably not sleeping well and then driving back and then driving to work the next day. I can't take time off because my job restricts when this is possible.

The way I feel today, I'm struggling to make DS some lunch and drive him ten mins to his friend's house.

I will need to spend as much time as possible in bed today so I can go to work tomorrow and cope with that activity. No way could I chat and eat out and drive for two hours and then cook dinner and do all the usual chores like laundry for DS school uniform on top.

It is so hard for people to understand. My sibling makes no attempt to understand at all though. I feel like they're just testing me. As if I could do it if I wanted to.

@DoAWheelie grief is so hard. I dream about my Dad sometimes and when it's really vivid you feel the loss again when you wake up and remember.

Hope your visit goes ok. X

@MewithME we get it. I’m sorry your family doesn’t.

I suppose they just can't comprehend why you are not who they knew before.

In some ways it's easier with people who don't remember the old me.

Totally get it @MewithME Im sorry your sibling doesn’t understand. I’d struggle to do that kind of thing even though I don’t work anymore and in theory have time to recover. I’d still hate to put myself in a situation that I know will leave me simply unable to function. People just don’t see it, so don’t get it!

@Realisation14 goodness that’s sounds horrendous. I do hope you can get some relief soon.

@DoAWheelie I’m so sorry to read about the grief of losing your partner and the dreams in the run up to the anniversary sound so difficult to cope with.

Enjoy birthday celebrations part 2 @Swanhilde

@TeaAndStrumpets yes painful joints here too! Most of the time tbh but def worse in a flare. I feel like the tin man sometimes especially when it’s damp like it currently is! Weather definitely makes a difference to pain I find.

Not too bad here, pottered in the garden with the dog this morning. Bramble clearing is happening slowly, mostly by DH with me clipping the odd bit! Popping out with DH as he wants to drop something off for MIL who is currently away so that’s as exciting as it gets today!

@DoAWheelie that must be so hard. Xx

@TodayIsatrickyone it's clematis chopping going on here! Sudden spurt of activity as the green bin is collected this week. The path is so dirty under the trimming, just lots of mud and moss. Needs a good sweep really.

I'm resting while DH goes to our storage unit to measure a display cabinet for DD2. We've been storing it for her through two house moves but she thinks she can fit it in now. Hoping it doesn't fit then it can just get donated but haven't said this! If it fits DH will be the one delivering it. It'll probably cost more in fuel than it's worth. Thank goodness she's agreed to let go of her piano, but only to her sister! We've paid a specialist to move it.

We have stored so much stuff over the years, DH's parents' stuff then his cousin's. Really needs sorting but when you clear a house it's all a mad dash.

MewithMe if she wants to see you that badly, and is understanding, she would come all the way to see you, staying nearby if necessary.

I've had enough of family etc not understanding recently, if just creates extra stress for us.

I've had DH saying about his mum (non understanding) today, about thinking of things from her perspective, she must be lonely etc, I have suggested he could take her out then, and reminded her she does have two daughters and a grand-daughter who speak to her regularly!

Another rainy day here, when will it end. Have still got got ups yet, might try a bath in a bit

Well the popping to MILs house turned out to be more eventful than expected as road to her village still closed due to flooding meaning DH driving another way around involving many windy country lanes. Dog had a few minutes run around in the garden when it absolutely tipped it down and we got soaked. Then on the way home I was thinking it was nice to at least leave the house and see a bit of countryside when the dog threw up in the car! So I’m happy to be home, dry and back on my sofa!

@TeaAndStrumpets our garden activity has also been prompted by the imminent green bin collection. It’s a fabulous motivator for DH 😂

Absolutely @Orangesandlemons77 It’s not your job to entertain his mum! Well done for standing your ground.

Well @TodayIsatrickyone ..you are living up to your username! Dog sick and floods..dearie me!

@TodayIsatrickyone i'm sure the dog had a lovely time up until throwing up!

Always nice to get back to the sofa on a miserable day.

@MewithME I get it, it's hard to understand why others don't though. People ask why I am trying to cram my work days in at the beginning of the week especially when chemo is on Mondays. They don't understand that by Thursday I need two days from work to A) switch off from it and B) try and combat the fatigue by taking it easier. I struggle to form coherent sentences by Wednesday evening. I then have some battery for the weekend to actually spend it with my children, husband and family.

@Oioiqueen I have the opposite as I work M-W-F so I can have a (very much needed) day off in between each working day. My immediate team understand this but everyone else seems to think this is a bizarrely eccentric choice.

@Oioiqueen I have the opposite as I work M-W-F so I can have a (very much needed) day off in between each working day. My immediate team understand this but everyone else seems to think this is a bizarrely eccentric choice.

Love to you @Realisation14 @MewithME @DoAWheelie and everyone who has hard things to deal with at the moment.

My FIL is gravely ill. I am the least important person in this scenario - obviously this is an awful time for my DH, our kids and his wider family. I am trying my hardest to be a rock for him without breaking myself - so much extra exertion needed and I am scared I will crash and not be able to do things. It's so hard.

(not sure how I managed to repeat myself either)

Relaxed morning here today got fed up of the sodding rain now though. Never thought I'd say that as I don't do hot weather. Seems dry now just as the light is going for the day though. This afternoon I took DS to a party in the village so an easy walk for us. However poor boy just clung to me for an hour of it. I think his separation anxiety is coming back but he is too young to verbalise it. I felt very self conscious, I wear a hat nowadays. Whilst I still have a full head of hair it's shaved to about a no 4 as otherwise it hurts. It's thinning in parts, I'm just a bit down as it's obvious that I'm now a cancer patient. I never felt this self conscious when I had breast prosthesis once diagnosed with my primary. I guess hair is different even when I've never been that bothered about having it long.

@VikingNorthUtsire I debated similar but as I work within school hours with two medical appointments falling on Mondays and Fridays I worried that it was too many hours that I'd have to make up somewhere else

It’s been a nice dry day which I’ve liked and it’s been mild too. Like another poster, I’ve been sick of the endless rain and I also hate really hot weather

I am so hopeful I can go back tk work and not work Wednesdays as that will give me the break I need. If they’d tolerate it and we could afford it I think I’d work m-w only.

Rained again here today, with a yellow rain warning tomorrow. So many floods.

But that's a small thing compared to what most of you are coping with.

@FurForksSake lovely to see you on the Olympics thread. It makes me stupidly happy to recognise someone!

@FuzzyPuffling same!! It’s a lovely little thread and it was nice to see you too :) I loved the idea of walking out the room in the sport style, it’s still tickling me!

You should have seen me doing the luge earlier....!😁

😂😂😂 Aren’t I just?!!