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.

@Orangesandlemons77 that can’t be easy wirh your DH. I do hope the course can support you with helping him understand. I’m sure years ago my CFS clinic had a session for partners and sounds like that would help you.
I actually found saying the clinic had advised regular rest periods/ pacing/ listening to your body etc helped family understand that I was actually following advice. I did have one family member who seemed to just think I needed encouragement to get out more/ move more. Not sure she still gets it tbh but she’s at least stopped with the unhelpful advice.

Yes I think it is muddying the waters because I have had depression in the past and people think that requires encouragement to not 'lie about' and they think that in doing so I am 'having time to dwell on things' and it might make things worse

I'm kind of impressed the GP and the CFS clinic diagnosed it because I do have quite a history of MH problems but as the explained the two can go together rather than it being one or the other. I just thought they would dismiss it as mental health. Anyway. Maybe with time family will understand.

Thanks for the message Hotbeverageplease

I might try watching that Riot Woman programme as the weather isn't good, if I get a chance. Has anyone watched that?

I think it definitely takes those around us time to begin to understand and adjust, I mean I’m still not sure I understand it some days so I get its hard. I always try and ask myself if someone’s comments are coming from a place of trying to be helpful…. It sort of stops me getting annoyed at any misguided comments.

I’ve just started watching “Riot women” too, I like the concept but I can’t quite decide what I really think yet, I need to give it a bit more time!

Just watched first episode of Riot Women online I'm not sure either. I didn't find it overly realistic in some places. Quite entertaining in some places though.

DD1 watched it and is still undecided. I think it's the Scott and Bailey writer? Loved that.
Well today has been a write off, can't stand for more than 5 minutes so crashed out on the sofa all afternoon. It's 8 days since my covid jab but do wonder if that has made my fatigue worse. Mildly upset stomach doesn't help. Just feel generally under par.

It’s sally wainwright who did happy valley and last tango in Halifax and indeed Scott and Bailey among others.

I went to hydrotherapy and I am so tired. I was tired when I went though..

Thanks for the cooking tips everyone. We're gradually getting used to the situation where I cook less. Last night I was very low and felt sick, and unfortunately DH made a very random concoction which I just couldn't eat. Fortunately we had milk so I took myself to bed with Ovaltine instead.

Counselling yesterday, brought up some interesting stuff. Today I might make it for a swim but otherwise rest and journalling I think.

Edited because I rudely forgot to wish everyone else a peaceful and happy day, whatever that looks like where you are.

Morning.

I am in stupid amounts of pain, sleep was elusive. DH was out all evening as a friend had a fall, he was waiting in a carpark for a couple of hours before a first responder arrived and determined friend could be put in DHs car and driven to hospital. An ambulance was hours and hours from being available.

I have written a to do list before holiday, I don’t think any item is doable today.

I have my online cbt group this morning. I’ll attend but I’m not feeling up to anything.

Children won’t be home today till Jo nearly 5, I only need to collect one and that will help.

I wish you peaceful days, I’m watching the Forsyte saga.

Morning all, got washed and dressed but heartrate shot up so back on the sofa. So boring.

@FurForksSake please report back on the Forsytes! I scoffed at the trailer, but remember being snooty about Downton Abbey before getting hooked! Never say never I suppose. I love a costume drama with horses and carriages but not anything "period" with motor cars because DH comments loudly if they are not the right year.

@VikingNorthUtsire my DH has learned to cook in the last few years but I have to tell him every little instruction, as he has zero instinct for it. We do end up with quite a limited repertoire because I have developed numerous food allergies since the cfs/me started. I often need a separate meal, but try to batch cook things only I can eat so that bit is easier.

Have a good day all!

I enjoyed the Forsythes, it was distracting enough. It has demelza from poldark in it, amongst others. Jack Davenport is a bit of alright.

I’ve now moved on to catching up on all creatures great and small, which I forgot I adore. But has cars…

My DH learnt to cook through several years of guosto boxes, it’s given him confidence. If I give him a recipe and he’s available he’ll cook most things. He made a very good apple crumble on Sunday that would feed 12. No assistance or questions. He then made 2 pints of custard and he and the children drank a glass or “shot” of custard each with much joy and laughter 😆

Ha, all creatures got an X-ray machine. They are referring to it as an X-ray machine. They’d have never!

Also I have used that machine in my working life in a vet practice (not a vet). I reckon they will all have gone by now, but the nostalgia is high!

@FurForksSake custard! That would be an amazing achievement in our house!

Yes Forsyte Saga maybe worth a look if it has some lovely young men in it LOL.

Oh we love All Creatures, and you'll be pleased to know the cars are pronounced authentic! I have set my BT (EE) box to record the series, so can binge watch without adverts later on. It is a real comfort watch.

I do like a long running series. We have found all sorts of stuff we missed out on when first shown, like Morse and Foyle's War. Cars all authentic you'll be glad to hear. The Last Kingdom was simply amazing, the well-muscled hero did spend a lot of time leaping in rivers etc but a gripping plot. The chap playing King Alfred was well cast, you could imagine him on a Saxon coin! I believe there has been another Bernard Cornwell series dramatised recently.

That's the trouble when you have inside knowledge!

Hello all. Just checking in. I'll read your news properly later.

I'm off for my 24 hour ECG shortly. Eek.

Very tired today too. I've popped an antihistamine...will see how it goes.

@TeaAndStrumpets We loved the last kingdom Utred son of Utred! and all the Viking series.

Destiny is ALL!

Hope the ECG monitoring goes smoothly @MewithME

Sorry to all those having enforced sofa days bur sounds like sone good tv is being watched! I adored All creatures great and small as a child, I maybe need to revisit!

Actually had an okay day here. Had my MIL pop
in earlier and managed a very brief dog walk this morning with the use of the perching stool. Dippy dog is still reluctant to let me out of her sight, understandable I guess having been moved from one home to a brand new one with a few days at the rescue in between.
So we’ve devised a system where the days I’m able, I walk around the corner to the field, perch, DH walks her and she’s happier to go a bit further if she can look back and and still see me. I perhaps look a total numpty sitting on a tiny stool in the middle of a field but it’s getting me out in nature at least and it’s nice to be able to walk a little rather than navigate the mobility scooter!

I finally made a hair appointment for tomorrow whilst I seem to be having a few better days. It desperately needs a trim so I’m really hoping I can make it!

I've had a stressful day. I found out that the repair to my home following the Great Soil Pipe Saga will start next Tuesday and I will have to move out for at least 4 weeks.
The insurance are paying for me to book into a hotel during that time but I think I'm going to find it stressful and depressing to be away from home for so long!
It has taken me hours today to coordinate booking the hotel, getting approval from insurance, completing the form to get reimbursed for hotel booking etc. Then I went for a walk round the block to try and get rid of some of the stress hormones and it rained and I got wet. So I'm now in my PJs in bed making lists of things I need to do before next Tuesday.

Fingers crossed for the haircut @Hotbeverageplease ! I just gave up during covid lockdown and once the fringe grew out let it all grow long. Every so often I get DH to give it a trim - after his initial terror he does fine. I have calculated how much I've saved at the hairdresser's...she was a lovely person but not cheap.

Oh no @EducatingArti that is a mixture of bad news and good! How awful to be in a strange place for weeks, but how nice it will be when it's all back to normal.

Hopefully you can update here for moral support!

Thank you @TeaAndStrumpets
After a really tough 6 months including the death of a parent, serious illness of a very close friend and significant changes in important relationships, my mental health feels much more wobbly than normal so any moral support would be welcome.

I'm a bit worried I'm going to feel depressed and isolated staying in a hotel on my own for so long but on the plus side, the hotel has a swimming pool that I will enjoy using!

@Hotbeverageplease which perching stool have you got and do you recommend it? I'm just getting to a stage where I can take the dog out for 20 mins a couple of times a week. I sleep much better at night afterwards! But I would like to go to more exciting places rather than sticking to the couple of fields with benches. So sounds like a perching stool might be perfect.

I've enjoyed reading all your posts, even if I don't reply to everyone. It's heartening (although sad) to know that there are so many people who understand what it's like to live with fatigue.

@EducatingArti that sounds like a lot to handle. And a sewage leak on top! Amazed you're still standing. Is it a nice hotel where you could order pots of tea in a lounge area? You could invite friends round to visit you for afternoon tea occasionally, then all gets cleared away and washed by someone else! Just pretend you're at the Ritz (assuming the insurance company aren't paying for the actual Ritz LOL) it will be boring being stuck in a room, so the swimming pool will be great for something to do.