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. 🌲🌲😴🤕🤗

Yes but while I'm in it I can pretend I'm terribly fit! It is a killer on the shoulders and elbows getting in and out. I have still got wrist pain from using my phone for internet the last few weeks. I've had a go with the gadget for turning pages on my kindle. At least I can use either hand to press the button. I am extremely right hand dominant so it gets all the overuse.

The osteopath is so good. He keeps DH mobile too.

Going to have my bath then get DS up and try doing a yoga video later. Feeling a bit better last couple of days

Funnily enough my osteopath does online yoga every day! He highly recommends it. I must find out which one he watches.

@FurForksSake Oh dear, hope you get some answers soon with your MIL.

@TeaAndStrumpets glad the osteopath helped today

@Orangesandlemons77 bath and online yoga sounds lovely. I must try and add something like that.

@Kitterkitkat & @Songlines My DS bought me some bird & blend tea at Xmas ‘as he knows tea drinking is one of my favourite pastimes. ‘dozy girl’ is his favourite too!

Just managed a little dog walk with DH which I pushed myself to do but actually enjoyed. Finished reading Wintering so time to choose a new book. Dog is nicely worn out and snoozing on my lap and DD feeling better and back to school today so I can relax a bit more. Re filled the fat balls in the bird feeder I can see from my sofa and birds have already discovered them so nice to watch the comings and goings.

Oh dear so after falling out with MIL who doesn't believe in ME now I think I have fallen out with the other one (the lightning process one) who has told me to stop sending emails as they have their own more preferred and trusted sources of information (mine was e.g. the Nice guidance advising against the lightning process, a BBC documentary on it and long covid and the ME association guidance so not exactly un-trustworthy)

Oh well I dodged a bullet not spending money on it I guess so that's the main thing.

Have not done the yoga as it has stressed me out now :-(

Oh no it’s so hard isn’t it @Orangesandlemons77 when it’s a friend or relative sending these suggestions. It sounds like you’ve done your research and sent her credible sources to look at as to why it’s not for you which is a sensible thing to have done especially when it involves a lot of money for such programs. If she doesn’t want to know, then that’s on her.

Thanks. It's a shame but this illness seems to be leading me to these fall outs. I bet they wouldn't recommend such things for e.g. MS or cancer. They don't understand it, but then are training in it too...which sort of makes it worse...and now I seem like the bad person for pointing it out.

But I'm fed up of keeping quiet, I will have to learn to sit with their discomfort. It's me who has to deal with it, it is easy to makes suggestions coming from a place of being fine.

Also with those expensive 'miracle cures' they should be more careful about suggesting them when people are vulnerable. I don't have the money anyway, but could have been sucked in...

There wasn't any apology for that, but there we go. I guess they believe in it and that is all that matters.

Oh anyway sorry for going on. It's just nice to have a place where others understand.

And I do have a couple of friends who get it, or aren't like that anyway, which is good.

They say having an illness can sort out who stays with you and who doesn't, maybe that is what is happening here.

@TodayIsatrickyone fatballs..! Don't know how long you've been on MN but did you ever read that thread about the artisan scotch eggs? 😁

@Orangesandlemons77 that's another level that your in law is training to do this. How did that happen? They sound like a nightmare.

Did you say your husband is helpful with them? You need to just disengage from any discussion. It's a them problem not a you problem and you don't have the energy to waste on it.

@Orangesandlemons77 I am totally shocked that this is being said to you. I wouldn't respond except maybe tell the person training that they'd be more useful to society selling tupperware or something.

And absolutely no, it doesn't happen with many other diseases. I think the original yuppy flu probably did so much damage.

My mum is generally pretty good at trying to understand but even she did her "oh, really?" Disbelieving tone yesterday when I said outcomes for Mecfs are often worse. (Her neighbour has just been diagnosed with MS).

Training to become a 'therapeutic coach' apparently, not sure how they got into it. Costing a lot of money apparently.

I did say something about miracle cures, lots of money and vulnerable people...but there we go. I don't think they will listen as obviously have made their mind up. It seems a bit like a cult.

So yes I have them and the MIL who doesn't believe it or that I have it as well. And the other SIL who asked me to the Joe Wicks talk! I think they are all the same Fantastic. Maybe they can have a good moan about me, and I expect they will if I'm still 'lying around' and not 'wanting to get better

And yes I will let DH deal with them I think. Just be polite and 'grey rock' when I see them perhaps.

Well it sounds like they are all cut from the same cloth. Not that I wish it on anyone, but anyone can become disabled. I was fine five-six years ago.

Maybe some people don't get it until they have been there themselves.

I think there's a startling lack of empathy all round these days sadly.

Also what I don't get is this sort of blinkered view, not looking at things critically and just blindly following things. They aren't stupid. Would you not really critically look at something you are going to join and pay money to train with, look at the whole picture. I guess not.

A fool and their money are soon parted...

I think it's the underlying feeling of blaming you for the illness, that you are just not 'thinking positive' enough (SIL) or gaslighting "I don't believe you" which gets me. Anyway at least I know now I suppose.

DH is kind of on board, but even he is refusing to join the online NHS session for friends and family. That would have been good. As it would stop him being influenced by his family perhaps!

They did say they have them every 3 months or so so he could join in future perhaps.

DS's girlfriend's mum has CFS and fibromyalgia and is in a wheelchair so at least he / they might be more understanding I suppose.

@Orangesandlemons77 I can't think of other illnesses that attract the same attitude, that's true. It's awful.

My DS is really accepting but sometimes he can be selfish/overly focused on what he wants because of his autism.

I am very lucky with my friends. Family and some colleagues have been harder.

@Orangesandlemons77 you need to have a lovely evening if you can manage it, don't let it wind you up. If you can walk round or sit with middle finger extended that will have great therapeutic power, and this advice is free!

I must say your relative is doomed to failure as a 'therapist' if she never listens to a word/disbelieves what her clients tell her. I guess she just wants to call herself by a fancy job title.

When my DH had cancer I mentally removed from my life anyone who said the following...
Keep strong
Think positive
Eat yellow food ( or other dopey new age theory)
I know he'll be fine ( are you a haematologist or God)

Strongly agree.

I totally get it @Orangesandlemons77 and you’re spot on that if it were any other illness, you would be believed and not be expected to try and think yourself better. It really does hurt, I know and harder as you’ve got a few of them all of the same opinion but yes good idea to try and grey rock if you can.
I like Tea & Strumpets middle finger idea! Swearing loudly in private is pretty therapeutic too!

Ha ha that’s ringing some bells I think! I’ve been lurking around mumsnet for a while but don’t post much apart from in this lovely corner!

Oh yes the strange emphasis on positivity and cancer is really odd too.

Has anyone else had anything odd said to them in the past? I have had a suggestion that a different condition might disappear if I thought positive.

Which is a worrying thing to say because it can flare up and need hospital treatment so it's a bad idea to ignore it or pretend it doesn't exist!