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 Hope you can at least get some rest. Unsympathetic partners are really a nightmare with this. I sometimes feel I am just managing to cling to a ledge, then mine comes and kicks me off.

Would you mind sharing how you got a diagnosis of MCAS please? I think I might have it but GP doesn't know how to diagnose it. No Long COVID clinics in Wales unfortunately.

My husband is great, thank goodness. I couldn't manage without him! However he has decided that he has tonsillitis (he has a sore throat) so I'm going to have to look after him for a while, if I can.

I just have awful side effects following cancer treatment. I got chemo toxicity after my first cycle of chemo which has left me with some lasting problems unfortunately. But because it's not a specific, named, condition it can be difficult to get people to take it seriously.

Oh - I meant to say - our cleaner came this morning so, as it was quite a good morning for me, we went out to buy many large jars of pickled onions (and a few other bits). I have an addiction to pickled onions at the moment. On a bad morning when our cleaner is here I hide in my bedroom with the door shut. She doesn't do the bedrooms.

Does anyone have any top tips for dealing with an MECFS flare causing a sore throat and painful lymph nodes under the jaw (when I am sick with an infection mine swell, with a flare they just hurt).

I find anaddin extra very helpful for this. Sorry no other tips.

I haven't had diagnostic tests but my pots specialist said its likely I have it as very common with pots. He said its very difficult to diagnose as you need to be in a flare at the time. He recommended a low histamine diet and im doing better on it, plus my symptoms firmly point to mcas and histamine issues due to severe uncontrollable sneezing after high histamine foods. Unfortunately it's very hard to be officially diagnosed but there are doctors who have done knowledge and can advise. Been told Dr Claire Ashby is very good.

@BerfyTigot @ChampagneRose agree.... Pain au 🍫...mmmm....gives me heartburn but worth it sometimes.

@Gioia1 my bit of joy today. I woke too early but laid in bed with my heat pad dozing with my audiobook and finished it. Such a lovely epic novel. Loved it as much as the first time. (Shadow of the wind by Carlos Ruiz zafon).

I've discovered Joy Ellis has a new book in the Jackman and Evans series so I'm having a cheeky lunchtime listen right now. I'm in pain and feeling crappy so it's nice to have some little joy while feeling 💩

Oh and I had naughty oven chips with melty cheese and beans for lunch like a big student!

Hi All! I'm actually on holiday in a very far flung place. DC2 is studying abroad for a term and I am visiting them. I feel very lucky to be here to be honest, although I am having to spend large chunks of each day in bed in my hotel room.

The absolutely brilliant thing is that I had an overnight flight to get here. British Airways gave me a free upgrade to Business!!!! So I had an actual bed to sleep in. I have been flying long haul all my life and this has never happened to me before.

Oh la la @dizzydizzydizzy you are living the high life! Sounds really good.😊

yup! Feeling very lucky indeed. In fact my luck has continued: DC2 and I went out for a fancy lunch today and we got chatting to the maitre d’ and ended up being served witb a free dessert! Yay!

You are winning. That's lovely 😍

Hi everyone, sorry I didn't realize there was a new thread until today. Tried to read as much as possible to catch up on what's going on. So great to have these threads because it doesn't feel like moaning here, it feels like understanding.

My sleep is getting worse and worse, I fall asleep no problem but cannot stay asleep and the vivid dreams/nightmares from PTSD give me anxiety during the night. So lucky to not need to work anymore but am a full time carer for my son so it's not a lot of rest time available.

I worked from home today from 10 till 6, then brought the old dog out for a short but slow walk, had a sandwich and about to go to bed with the electric blanket up high.

Was feeling as if I should be doing more with my evening, but achey and tired, then I found this thread and I realised that going to bed at 7 is perfectly fine.

Can I join in? I’ve had a bad afternoon. I have narcolepsy and couldn’t stay awake after work. Then I feel dreadful when I finally have to drag myself out into the yard.
I wish I could explain how awful this condition is. People just don’t understand it.

sorry to everyone having bad days

@dizzydizzydizzythat sounds amazing!

William Boyd has a new book out too - I love his stuff but I can only read a few pages a day so don’t ask me anything about the book for a few months 😂

@Realisation14 don't apologise. My fault for jumping too soon... never had a thread fill up before in all my years here. I am usually the thread killer who arrives and makes a comment then the thread dies 🫣

@Pricelessadvice I have never met anyone with narcolepsy. I remember a documentary from twenty years ago I think. Must be quite scary just falling asleep at the drop of a hat in the middle of things and very frustrating. Is there any treatment?

Waves at @Florenceandthemaniac ... I'm in bed already with my heatpad on. This thing gets some use! Audiobook time soon.... maybe Epsom bath salts bath first. I went crazy and got a lavender 🪻 one for a change. Inspired by this thread only can't remember who said now about lavender the other day.

@MewithME most people get prescribed stimulants.
We have a problem with our sleep cycles so we go into REM too quickly and as a result we don’t get enough restorative, resting sleep. So even though I might sleep during the night, it’s the wrong type of sleep. So you end up in this state of sleep deprivation, but even when you nap, you just fall back into REM sleep again. We also tend to wake straight out of REM sleep which means we can suffer from sleep paralysis and hallucinations.
Best way I can describe it like a normal person being kept awake for 48 hours and then telling them to function. The need to sleep becomes so overwhelming that you just have to give in to it. But you wake up feeling no better.
Honestly, it’s hell.

Sounds so awful @Pricelessadvice . With MEcfs I can relate to sleep not being restorative but obviously dealing with different issues. Sleep paralysis can be frightening.

And I'm sure you've tried loads of things and will get people (like with Mecfs) saying..have you tried xyz?

Do you have a support group specific to narcolepsy?

@MewithME omg same here I'm usually a thread killer too lol!

Fell asleep around 11pm and here I am awake already for the last 30 minutes already.

That sounds horrible @Pricelessadvice. Interesting to hear people with narcolepsy are prescribed stimulants. I have recently been diagnosed witb ADHD and we get stimulants too. In fact at one point I was put on a narcolepsy drug - modafinil - but I'm no longer on that.

I know someone who I think must have narcolepsy but she has not been diagnosed and it won't happen now because she is late 80s.

I have that now too. I wish I had the answer as well. It's probably just rest, isn't it?

Mine come with massive insomnia. I thought about it carefully tonight and realized the flare kicked in before the insomnia. So it isn’t just being knocked out by tiredness.

My insomnia always gets worse when I have done too much. As does my sore throat.

I’n on holiday at the moment in a far flung land which I will probably never visit again. I am desperately trying to do some sightseeing but not too much. I’m teetering on tbe edge of overdoing it.

There’s various FB groups that I’m part of. It’s a lonely illness because unless you understand what excessive REM is like, people just assume you are lazy. They see you sleeping and say “how can you be tired, you’re always asleep” but they have no idea.
I’ve just woken up exhausted after a night of non-stop dreaming. I could write a movie script about it- every little detail. I feel like I’ve been awake all night, even though I haven’t.