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. 🌲🌲😴🤕🤗

Ohhhh it IS a gadget. That's cool. I read it and then read it again and just thought you were saying your new book is a 'page turner ' 🙈

Yes that sounds similar to DHs family one is vegan and another has tried giving me vegan health books before.

Yes I found the NHS course quite good if anyone wants a copy of the course materials just one me your email address as I was sent copies on email.

Yes I know it's best not to read about conditions online, I'll check with my medical people this week.

I managed gym this morning then felt all floppy at a hot shower afterwards! Put heating on at home when I got back and dozed off.

Anyway there are cups of tea to be drank and things to watch 🙂

I've been pottering around getting ready for going away tomorrow. Luckily not much packing involved but the house needed to be sorted out, washing done, bed stripped and remade, fridge emptied (VERY odd meal this evening!), boarding pass downloaded, kindle and power bank charged. Now all are done, so I'm off for a bath and heading for bed 😀

I'm not even thinking about the appointment with the neurosurgeon when I get back, there's nothing I can do about it until I see if there are any decisions to be made, hopefully not.

Sleep well, all

@Songlines that sounds productive, enjoy your bath.

To my mind baths and tea and biscuits are some of the finer things in life <hides empty biscuits packet wrapper>

You are not wrong @Kitterkitkat . I just had my bath with epsom salts to help with pain. Hady audiobook on. Lovely. Cup of chamomile tea and sleep time now.

Hope everyone sleeps well.

I watched Pottery Throw Down and am now in a warm bed. Nothing better!

Have a great trip @Songlines

Thank you.
Epsom salt bath ready. Bird and Blend Dozy Girl made and ready to drink.
Life's okay

I can recommend full body bath pillows to add to the bath love! I have Epsom salts coming out of my ears.

Morning all!

5am rude awakening with racing heart. Horrible adrenaline rush, how I hate them. Wide awake but got back into bed to keep warm, now up and anticipating my morning cuppa.

Off to the osteopath this morning. Last week he unknotted my neck and relieved the pressure on my sciatic nerve, but I am still pretty stiff so hopefully he can work more magic.

I have caught up with the Christmas All Creatures Great and Small. I find it very soothing! Also now we have internet could watch Digging for Britain on iPlayer. I like Tori Herridge (?) the new co presenter. She did a really good series a few years ago about Britain's coastline, explaining about the layers of ancient rocks/sediments and how they were formed over time. It was actually fascinating.

I hope everybody has a good week.

@TeaAndStrumpets isn’t in Alice any more? I haven’t watched the new ones yet.

ive been watching a series on sky about hockey players. If you know, you know.

Alice Roberts is still the main presenter. Hockey players? Will investigate!

I've just been reading that the approach recommended by a relative for ME / CFS is based on something called the Lightning Process, has anyone heard of that?

See https://me-pedia.org/wiki/Lightning_Process

Think I will be sticking to the NHS info from now on. Oh well at least I didn't get involved in an expensive mistake...

@Orangesandlemons77 yes and steer well clear. The me association does NOT recommend it. It sounds like a very expensive version of graded exercise therapy with a good dose of cult weirdness attached. I have heard it said that they obviously only promote the people who seemingly got better but no follow up on whether this was maintained and suspect that some getting better were misdiagnosed in the first place.

@Orangesandlemons77 @MewithME there's always money to be made from people in despair. I think the Lightning Process is similar. People like a quick fix, but the attitude of making people blame themselves for somehow failing to improve is quite evil.

"Rise, take up thy bed and walk" but I don't think Jesus was in it to empty people's pockets.

Sadly lots of people think this way. That we could be better of we wanted to be. If they had it, then they'd know that absolute nobody would want it.

I think my sibling thinks if I just pushed through I'd be fine. Mind over matter.

I need a "Grr" emoji.

Well, this is the attitude I am getting also. First MIL not believing me. Then SILs going on about this.

Kind of wish I'd not said anything at all. At least I did that NHS course so have somethings useful to follow.

I can see that with no advice at all people might get more sucked into these things. One of the SILs is even training to work in it.

Ahh Lightening process… Sadly snake oil salesmen preying on vulnerable people who are utterly desperate to get better. It truly makes my blood boil but thank goodness a quick google these days can prevent people going down that route. I looked into it 20 years ago and there was a lot less information available then.
I believe there was a psychological assessment prior to the course to see if you're suitable ( cleverly excluding those likely to question the methods?) and some kind of weird vow to silence afterwards banning anyone from talking about the experience or sharing the methods which rang alarm bells for me. If I found something that worked l’d be shouting from the rooftops about what helped me and sharing the info for free with anyone who was interested.

Not easy when it’s relatives suggesting this stuff @Orangesandlemons77 but just remember you're the one with this illness, not them and you know what’s best for you.

Hope everyone can have a calm and manageable Monday. I’m still in bed with a cuppa aiming for a shower shortly when I can summon up the energy! Feeling a bit fed up today, not sure why, everything just feels hard work just now.

Oh I love dozy girl @Songlines! I swear it's the nicest flavour they do. Think it must have chamomile in hence the 'dozy'.

It's nice to 'chat' to kind people who have various health issues, it can be daunting at times. My medication has helped tremendously, I no longer lose my balance and have 12 hour retching fits.

I might accidentally say something which I think would help but tell me off if I do.

@Kitterkitkat it does! Have you tried Deckchair Dreaming? I'm taking that away with me 😀

Argh, we are now navigating does MIL have cancer. She went into hospital as her gallbladder was bothering her, she’s got a massive gall stone and waiting for a private appointment to have it whipped out. They did a CT yesterday and they’ve seen something. Lots of questions and waiting now and trying to get everyone not to panic.

I've had a good session with the osteopath. He's loosened my hips a bit more, worked on my knees, worked on my neck. I'm nearly a new woman! The most arduous thing is peeling out of the gym gear I wear for my treatment! It sucks everything in but it's a struggle to exit, and my hair is a mass of static. I must get some cotton leggings - gym stuff was a panic buy!

@FurForksSake oh dear hope there's nothing bad when they look into it more xx

I live in sucky in compression gym wear and crop tops instead of bras. I find with my woeful ligaments and joint issues it helps hold me together a bit better. However, I wish it magically went on and off. My shoulders have not forgiven me 🤣

Glad they’ve given you some good relief?