What are you up to today if you have chronic illness? Thread 3

[MewithME]

Link to last thread.

https://www.mumsnet.com/talk/_chat/5406424-what-are-you-up-to-today-if-you-have-chronic-illness-part-2

Can't believe we filled another one.

@TeaAndStrumpets I tried just about all of them on I think...at one point I picked some and realised they're the same as my current ones 😂

@BerfyTigot sorry your sleep is so out of whack. That's miserable. I am always go to sleep I just wake up a gazillion times.

@FurForksSake my mum always does them on a tray. Would that work?

@BerfyTigot you need some monks with you on the sofa.

I've missed something. What is this talk of monks? Ha !

@FuzzyPuffling salmon, veg, chips and Roses, that's all the food groups covered ;-)

Strawberry creme .. five a day innit?

I am feeling accomplished, I have had an everything shower! I started at the sink and brushed my teeth and exfoliated my face. Then went into the shower and shaved, exfoliated all over (had to done a tube of body scrub, it’s been years!) washed and conditioned my hair, washed with a bar of dettol soap and then finished with espa shower gel. Came out and covered myself in Aveno!

im in surgery prep phase, I’ve had post op wound and other infections and I’m desperate this time to avoid it. So I’m going to try and shower every day with the soap and shower gel before I move to the soap and hibi cleanse stuff on Thursday for Friday.

also trying to moisturise a lot to lessen the impact of it.

I’m now knackered and sore and of course on the sofa!

@TeaAndStrumpets also baffled by the monks. I was brought up Catholic though and am related to a couple, so have access to some if needed 🤣🤣

I have chronic pain through uncontrolled RA. Yesterday it seemed like a good idea to hang lining paper in one of the bedrooms, ready for painting. Been up since 3am off my nut on codeine and morphine as it’s extremely painful.

Not a chance I’m finishing the papering today. Getting this bedroom done is going to be a bit of a mission.

@HelpMeGetThrough that sounds really hard. I don’t know much about RA, is there anything they can do to help you or is it more of the mind-based pain support they offer?

Apart from the medication I take regularly, I have a biologic infusion every 6 months. Im due it this week, but it’s been 8 months since the last one, which has caused no end of problems.

It takes about a month for it to kick in. It never makes me pain free, but it does slightly reduce the ferocity of the flare ups.

The monks is from further up the thread @TeaAndStrumpetsfinding Gregorian chants relaxing!
@FurForksSake
that shower sounds amazing and exhausting!
Back in bed with tea and biscuits after sorting puppies and dogs out. Resisted last nights washing up till later. Really tired and achy. No pup visits today thankfully. We have 3 girls to sell but the 4th doesn't get collected till December so not panicking yet. MIL up very early unsettled and back in bed for now with the telly. Need to do her washing and put ours away.
Finished watching The Last of Us last night on 4k. DH has bought the first season of Severance also.
We tend to wait and buy the 4k rather than pay for series or wait for things to build up then pay for a month or so subscription like Netflix and Disney. We have a few things on Netflix to watch so will restart the subscription soon. Still suffering through MAFS UK too.

@MewithME
@BerfyTigot

Gregorian chants to aid relaxation! Discussed a few pages back.

Sadly for me that is is EXACTLY the sort of thing that gets me in a pickle!

CFS/ME for me. I get so bored with enforced rest I compile a wish list of things I am desperate to achieve. The minute I feel better it's like I've been shot from a cannon and I run round desperately trying to do all this stuff. Always ends in disaster and I get a crash.

I was so poorly last time I got carted off to hospital, and have been resting ever since trying to stabilise all the physical symptoms. It's taken me a fortnight to get my heartrate to calm down just sitting, but I'm not up to much yet.

We are selling our house and DH has stopped all viewings until I am able to function a bit better. I have just spent half an hour begging and pleading to resume them this week because I will be Ever So Good but he's not having any of it. So frustrating. That is my version of your lining paper!!

All the best, hope you can get on top of your pain (but back away from the paste brush)

Gosh can you imagine if the NHS sent out actual monks to sing to people.

Thank you.

I’ve got until Uni finishes for Christmas to get it done, as it’s the youngests room. Plenty of time I hope.

@FurForksSake you and your airs and graces and fancy hygiene!

Seriously that is fantastic. Only on here dare I confess to no shower for weeks, more of a Forth Bridge job. The shower is up loads of stairs so might as well be on the moon at the moment. We do have a bath downstairs, very exhausting to climb in and out of, and thank god a bidet which is one area sorted! My hair is long and fine, so looks OK when brushed.

When you think how our ancestors coped with jug and basin, at least we have hot water! I have sometimes thought I should be rubbed with goosefat and sewn into my vest for winter.

Best of luck! It will be lovely.

Met an ex work colleague for a lovely pub brunch this morning. Was fab to see her and hear how things are. Reassuring to hear that, although I didn't leave by choice, I am so much better off out of there!

This afternoon will be spent drinking tea and resting ready for work tomorrow.

I also have CFS/ME and struggle with the boom/bust cycle.
Also AuDHD which leads me to impulsively believe I can finish something just because I have the energy to start it. Even seeing the graveyard of abandoned (half-finished) projects does nothing to dispel the notion that I am capable of more than I in fact am.

Also managed a shower and hair wash this morning! We are all ever so clean and fragrant. Apart from that, I have peeled potatoes, while DH shoved lemon and thyme butter under the skin of the chicken, we fancied a proper Sunday dinner today. And there will be a lot of leftovers to make the rest of the week easier.

I am now reclining again, but I am also researching camper vans.

The reasoning behind this is that we both get tired easily driving, but we also both want to travel, and have family at opposite ends of the country. So I thought, what about a camper van? we could then do the trip to Kent, or Cumbria in easy stages. We also don't like driving in the dark, so in winter there isn't enough daylight for us to get very far.

its a thought anyway. Probably won't happen, but its nice to dream.

I’ve been looking at camper vans, not because we are getting one. Chap has moved in next door and he turned up with a monster camper van (and an equally monster car) and from the outside, this van looks like a spaceship with a satellite dish on the roof, so I’ve been nosing online.

Yes, I get foolishly optimistic. It can be so frustrating, and the graveyard of half- finished projects definitely rings a bell! Married to someone the exact opposite, so hopefully we balance each other out.

My adult daughter is like me only with loads of energy so is doing about 10 projects at the same time because she gets distracted and veers off on to something else. No diagnosis when she was young, but she has managed work by being self employed. She is famous for arriving at appointments wrong time, wrong week even! Her teen son has ASD and she asks him to remind her about things because he is much more organised than she is.

@danglethedingle
@HelpMeGetThrough

Thirding the camper van love! They are just so luxurious these days. My cousin and partner bought a nnew one just before Covid and were frustrated that they couldn't go anywhere. However once everything opened up again it had actually gone up in value. They have been all over Europe in it since.

I'm still in bed here, think it is after having seen MIL yesterday for the afternoon. Woke, then slept till 12.30pm, DH made pancakes so joined them for a yoghurt, and some fruit and coffee then back for a nap until 2.30pm.

She upset me yesterday by telling me "I don't think you have it (ME / CFS) because I met someone else with it in a shop and she was very thin and pale (she does have a thing about weight as well and always going on about that)"

I explained it was diagnosed by an expert with over 30 yrs experience and my GP as well, but she said "It's one of those things they diagnose you with if they don't know what's wrong"

Anyway not sure why I put up with it all. Later I messaged her a brief summary of the condition from the NHS site, I said to help her understand it. I know, maybe a bit passive aggressive but still.

I can imagine she has been discussing it with her friends (who are mainly quite dippy / anti meds / anti vaccine) which probably hasn't helped.

The course I was on Friday was saying about arguments being a 'high stress / red" activity and I have been thinking about that. Maybe I will need to make some changes, she has got used to me taking her out on Saturday, but maybe that needs to change and DH can do it. It's his mother after all.

I think I also need to reflect on why I have tried to make such an effort with MIL over the years, maybe it is to do with my own relationship with my mum not being great (we are no contact) Maybe I have been looking to MIL instead, but that is obviously not working.

On Friday she rang and I said about the course, and she asked 'why it was so exhausting' and I had tried to explain about that as well. (I had come home and slept all afternoon)

Maybe it's time to just get on with things myself, why so I need some mother figure anyway? My dad was nice but he died this year, too. And maybe I am just now in that age range where this happens, and need to deal with it.

Anyway sorry for all this. And a big thank you to MEwithME for these threads and keeping them going.

That must be such an effort that can be when you have an illness and family commitments etc, work as well, and it is appreciated.

Best wishes to everyone else this weekend, hope it is going OK.

Oh I remember now about the Gregory chants chat....brain didn't connect it with monks. Lol. Duh.

Camper Vans can be hired. They're mega bucks to buy. I thought about hiring one for a holiday but it's a bit scary on my own with DS. Part of me thought it'd be good with MEcfs. I could stop whenever but then it's the mental fatigue of 🤔 about it all. Where to stop. How to manage facilities. I couldn't manage realistically.