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.

I was feeling accomplished wrapping up the Christmas cake and then you came along with your outdoor exploits 😆😆😆

Glad you got those jobs done, I’m sure it has helped a bit with the lightness!

DH is taking ds1 to scouts and then going for a swim with ds2 while he’s out and about. And then popping into Aldi for bread and milk as I screwed up the shopping delivering time. I’m glad he can do all this!

Does anyone else get those sudden adrenaline rushes in their chest? Think it's part of PEM. I was just sitting there minding my own business, then whoosh! Seems unfair to get it during the day, usually it's at night. Oh well, need more rest. I had been chatting to DH so should maybe take a vow of silence!

Insane more like 😁

@TeaAndStrumpets not sure ..I usually wake up with a jolt. I think that's similar thing. I can't just gently wake up ... I get an instant thing and my brain running about things. I listen to audiobooks to tune out and doze off again usually.

If you or anyone else would like a copy of the course handouts (could be printed out) please just pm me with your email address and I will send my copies across.

We have an activity log thing to do, fill in with 'red' high energy activities or other colours for more relaxing activities. They did say could have colours for people too!

DH is watching a noisy film with the DS so have retreated to the bedroom with a hot water bottle. conserving energy (find some films a bit overwhelming at times)

Thinking a bit about the course today. It was quite nice to be learning something new in a group context with leaders, although a bit daunting especially the bit where you introduce yourself, It was OK though.

Maybe in future might be good to do something like join a Buddhism mindfulness course, if the sessions were not too long. I'll see how things go

Spoke to an old friend about possibly getting together before Christmas. She is more understanding than some people I know, I think her mum did have something like ME come to think of it. She said we could just have a phone call if it is too tiring, we'll see. Would be nice to try and catch up - maybe could replace one of MIL's Saturday jaunts with a visit to her, perhaps.

@Orangesandlemons77 that all sounds quite positive!

I would love to meditate, it sounds like the very thing to calm down the "noise" in the nervous system. I have watched a few of Raelan Agle's youtube videos and she seems to have found meditation has helped her more than anything.

I tried her suggestion of repeating "i am safe" "my body is fine" to calm the amygdala, but I really struggle keep a focus on the words. My mind wanders as soon as I start. My brain obviously doesn't want to be trained, but it all makes perfect sense.

Funnily enough I was on a thread about the Latin Mass (of all things) and I commented I sometimes feel the need of a rosary to soothe my brain. It's all very potent isn't it - chanting, praying in a set format. DH would be shocked if I started praying though! Maybe some Gregorian chants to relax to...

I like the Calm app for meditation and they have lots of just music and things like chants on there, might be worth a look. they have some sound baths stuff and EMDR I am going to try (need headphones)

The only thing is quite a few of their meditations are in an American accent which I don't really like, I prefer the main who does Headscape for that although overall think Calm is my preferred app. I like the Sleep stories on Calm, very descriptive short stories.

I think Spotify also has some stuff on there but haven't checked much as usually use Calm. BBC sounds might have some stuff on there as well.

Have you heard of loving kindness meditation? It is where you say things like "Let me be safe, calm, healthy, whatever and then let X (the same) and do to general people and those who you 'find difficult' as well.

I try that sometimes but haven't really got the hang of it and find it seems to feel like more 'work' in a way at times.

PS just found some "Gregorian chants for healing' on Spotify TeaAndStrumpets

Listening to it now, it is nice and calming.

EMDR tracks in Calm app MEwithME wonder if might help PTSD

Yes, and in the morning when waking up, I wondered if might be perimenopause as well, is heard that could cause this too, but to be honest HRT hasn't really helped it. Could also be panic attacks perhaps? I wasn't sure if might be an anxiety thing, but I guess all these things can be interconnected.

Thanks. I'm feeling a bit bad saying I think I have cptsd or PTSD... It hasn't been diagnosed... just a thought I've arrived at. Maybe it's 'just' trauma but I know it's contributed to my illness. Years of hypervigilence and huge adrenaline to get through what I went through.

This is my favourite online sound bath

This is my favourite meditation. She comes across so kind. I can't do American accents either for meditation.

Fab thanks for all the tips!

Thanks for sharing those @MewithME

i have on some giant dungarees today. I am going to try and make some wreaths with the kids this afternoon, if the polystyrene hasn’t been eaten by mice. I’m hoping it’ll be a nice gentle activity. I really want to go for a walk in the woods, but I can’t and I shouldn’t.

Ditto the chants, youtube has loads. Got my heartrate below 70 first time today! Worth doing it again a few times..

I like the 'Nothing much Happens' bedtime stories on Spotify. I used to love a bedtime story, both when I was little and when DH used to read them to the kids. Might be worth a listen to lull you to sleep.

This morning I have been v productive! Got a burst of energy and put it to good use (cooked a simple dal for tea) but I am resting now as I am acutely aware I am in danger of overdoing things.

DD is back from uni for a party next weekend so I have been making plans and doing an online food shop of all her favourite things. We also have DS and his GF for tea on Friday. Happy times 🥰

This afternoon I'm going to potter in the garden with DH's help - violas will finally get potted up 🤞 Then it's Strictly and dal for tea 😋

Have a restful day those who need it.

Ooh I love a Gregorian chant, so soothing. Thanks for the recommendations. I have tried to meditate, but what passes for a brain won't shut up when I want it to. Which is annoying as most of the time it sits there like a potato while I search for the words I know perfectly well.

I have Cardiac Arterial Spasm that happen in my sleep. I get woken up by pain in the chest that feels like a heart attack, (it kind of is, as the heart is being starved, but there is no blockage) and obviously this sends me into an automatic panic.

I find just counting out loud as I breathe, the old 4 in, hold for 2, 4 out, hold for 2, as good as anything to get me through until the meds kick in. But sometimes I just say 'it won't kill me' over and over, if its really bad.

Its a tracksuit day today, (code for I am not leaving the house unless its on fire) but I have got a load of washing out. Apart from getting it back in, that might be the only productive thing achieved today. And that task may well be delegated to DH

I'm not sure if matters much about the diagnosis MEwithME I don't have a CPTSD one either (just PTSD from the medical trauma) all these things (ME / CFS, fibre, CPTSD) seem to involve the nervous system and maybe working on that might help all of it? Not sure, though I am not an expert.

Thanks for the links, I will have a look at those.

I have just woken up nearly lunchtime again, keep doing this and not sure if should try and change the routine.

Ooh I didn't know Spotify also had sleep stories, I will look them up

That sounds difficult and stressful danglethedingle

Sounds like you cope with it really well, it must be useful having the diagnosis so you know what it going on? Best wishes to you

@danglethedingle I had ACT therapy through my LC clinic and was taught (amongst a lot of other useful things) a really simple but (for me) really effective way of quieting my brain when it was wouldn't shut up. For me, it's when I wake up in the night and fixate on something to worry about.

Anyway, what she told us to do was say out loud 'thank you Brain for pointing that out, I've got it now'. So simple, so ridiculous even, but it worked for me. I rarely wake now and if I do I just say the mantra and it calms my thoughts.

Worth a try, although I appreciate your reason for waking is a physical one.

The Happiness Trap is all about ACT and a really good read. I’m trying to work my through. I’m a low intensity cbt practitioner / therapist and i am trying to work out how / if my service will train my in ACT.

@Swanhilde thanks for the tip, I also lay awake at night obsessing about things, or just awake, so I will try it.

ACT is a new one on me. Interesting.

I'm in Specsavers. Exciting stuff !

Acceptance and commitment therapy is definitely worth researching and leaning in to. Particularly I think for us as a group with chronic illness and poor health