What are you up to today if you have chronic illness?

[MewithME]

I do like the What are you doing today thread. But as someone with an energy limiting illness, I find myself marvelling at the level of activity that is beyond me.

Sometimes I feel sad about it even after accepting my illness for a few years now.

My week at work has been brutal and I'm feeling very weak and worn down. I am trying to find some inner peace.

This morning I managed a bath and ds helped when shopping arrived. I sat in the garden for a little while but newish neighbours were playing loud music which I found a bit stressful.

I've managed to put a wash on and made some lunch for us. I'm now in bed listening to some music festival in town floating on the breeze. There's sirens going off, so hope nothing bad has happened to anyone.

I'm going to lie down for a couple of hours. Hoping to watch a film with DS later. Pizza for dinner.

I found a nice new podcast called Shedunnit with lots of Agatha Christie in it which is up my street.

I may just lay here and listen to that for a while.

So if you have ME or LC or fibro or anything else that is a flipping funsucker of a thing to deal with, do share your little things. Our world is smaller but we are here.

I will add I know there are those worse off than I am, but not matter what we deal with, chronic illness is hard and it's hard to feel part of the world.

That's interesting about the trauma connection, I think sepsis started my ME / CFS symptoms, and having emergency surgery, also got PTSD as well.

Slept in till lunchtime but still feel tired, woke to several missed calls from MIL who is supposed to be coming round. She is pet sitting for us as we are going on a last minute holiday before the school starts back. Just 5 nights, till Sunday.

It will be nice to get away but not looking forward to the travelling etc, we have to leave at 2.30 am to catch an early flight so it will be an early night tonight. For the first time we are going to an 'adults only' resort as DC are both over 16 now, I think this is why it might have been still available in school holiday time.

I hope everyone has a nice bank holiday, it looks sunny out there but not too hot.

As we're talking about where we are from, I am Scottish but now living in the SW

Parkinson’s mid stage, awful nightmares two, warm shower and bath,very achy, laundry, wash on,on line now
tesc order received,inattentive cat, no other half

This is really interesting. My NHS consultant neuro pain specialist (London) says that the connection to past trauma and pain/ headache disorders is starting to be understood quite well now in her field. That all makes sense to me. Her big thing is you have to avoid stress to get out of the loop of pain, which is really great in theory but very hard to do.

I have DC with SEN like some others of you and I’m not sure how we are meant to destress or try to take things easy physically either..

I need some serious good quality sleeeep. Feel like the living dead.

I think you're spot on there. I think there's also a lot of us with SEN kids or neurodivergence ourselves.

I never seem to get a break. The holidays have been a slog and back at work nearly now. Just different stress I suppose!

@Whatarethese1 are you struggling to get to sleep or do you wake a lot? I only seem to go to sleep with a podcast or audiobook these days to calm my brain down.

@Nsky62 what causes the nightmares? Do you know? Sounds horrible. Sorry. Sometimes getting the washing done and shopping in is an achievement when things are rough.

I definitely find stress can make my symptoms worse. Menopause, teenage children and elderly parents with dementia here. I'm having to have really strong boundaries and encourage others to seek help elsewhere where they can. Not easy though.

@MewithME I also can only sleep with an audiobook since becoming ill. I've never thought about it calming my brain, though, that's really interesting.

I also have to listen to them on about 80% speed as I can't take it in otherwise.

I am interested in the trauma and pain/chronic illness connection. I think my stress levels prior to catching covid made me susceptible to catching long covid and I think the continuing stress kept me there.

My DS16 is ASD with learning disabilities and extremely dangerous behaviours driven by anxiety. Definitely have trauma from the stress of living in fight or flight. Plus many more life stressors which just keep coming.

If only there was a pause button.

Stress absolutely makes my symptoms worse too and I’m pretty sure ongoing stress following a traumatic event may have been part of the trigger for the illness alongside other things. I didn’t think so at the time but looking back, I can see it makes sense.
I try and use meditation apps etc and I’m aware stress doesn’t help but it’s impossible to avoid it completely. Another carer here too, elderly parents to keep an eye on, teen still at home, plus I have a DH who has a long term disability too, being vague as don’t want to be too outing on a public forum. We tend to muddle along trying to care for each other best we can and trying to appreciate what we can do but it’s not always easy.
Hope those working have benefited from the bank holiday today. ( if you’ve had one where you are!)

I really like the Calm app although some of the meditations can be a bit American. Also Headspace is meant to be good. I quite like the sleep stories on Calm, they tend to be things like going on a train ride etc little drama or upset and lots of description! The music is also good.

I second this. Love the Stephen Fry blue gold sleep story on calm.

Thanks for the Calm app recommendation. Have signed up fora week for free. Hope it helps me sleep 🤞🤞

I use the app Insight timer sometimes too, There’s a good ‘Deep sleep meditation’ I often use at night that I like.

Morning all. Hope you slept well. I had dreams which I partially remember for once. I woke up with my audiobook still playing and it took me a moment to work out if I was dreaming still or not. Brains are weird things. Listening and dreaming at the same time! Have you ever done that thing where you hear a sound in real life and it's in your dream too? I once dreamt vividly about a missile hitting close to where I was staying and woke in a sweat. Took me a while to realise it hadn't happened and it was the loud rumbling sound of a tank going past. There was a military base near my ex in law's cottage I think. I was there alone at the time. Was very weird. I was absolutely sweating and so 😌 when I realised it wasn't really some disaster outside!

Anyway, big drive home for me today. Been with my mum for a few days. I find it hard to leave her now she's getting old. Makes me sad. Hoping the journey isn't too stressful. So many crazy drivers these days.

Morning hope the drive goes well today @MewithME and you're back home safely. I've had dreams where my alarms gone off and I've turned it off in my dream or gone looking for the source of the noise then got more and more annoyed and panicky in my dream until eventually waking up. Back working today from home, very hot and sweaty weather. Had a couple of nights of broken sleep still trying to catch up from. Litter born to our Mollie yesterday and the realisation we now have 18 pups to sell and all the work and talking to people that goes with it 😩, been a few years since we did all this. DH is a great one for saying we need to do something then expecting me to just do it. He basically assumes control/takes charge and pushes all the actual work onto me. Happens all the time. Anything he has to do himself he'll put off then talk himself into deciding it doesn't need to be done or changing it so it's easier. Drives me mad, I'm sure he's got ADHD or something like it. Does anyone listen to the "nothing much happens" sleep audio? It's on podbean.

Apologies for above post/rant! Stressed and anxious!

Hey @Stressybetty I just got home and had a much better journey back than on the way up, thanks.

Sorry you're stressed. 18 puppies is a huge litter. What a ton of work! Hope momma dog is doing well. I thought it looked like a big litter in your pic!

@MewithME glad you got home ok. No this is our other dog, they had 9 pups each. Situation of our own making really!

Omg well that's a bit less eye watering for the dogs but good grief....what madness of planning or utter fluke happened there....? I hope you'll be ok with your energy levels.

Still I bet they are gorgeous to cuddle 🤗

@MewithMEyes, was very unlikely to happen and with big litters too! DH talked me into trying both girls so I'll blame him. Both girls are content and nursing well and I'll just have to try and rest as much as possible. The work ramps up around weaning so I've got some time. They are incredibly cute and will get cuter!

I will need more pics when they get bigger @Stressybetty 😍😁

I'm in south wales too!

The pem has hit badly today. Does anyone else get super weepy when they're in pain? I don't know if it's menopause too or just the pain and pem..

Feel really sad today. All I've done is a few chores and watch TV. Sometimes I cope. Sometimes I just feel so fed up at not being able to be do what I want to do. I am back at work Monday.

I don't regret going to see my mum but going there has basically taken up two weeks. It's getting so so hard to do. And so hard as she is getting old.

I am feeling maudlin. Sorry all.

How is everyone else today?

I also get v weepy in PEM. Huge sympathies @MewithME- I think that long car trip and the stress of the visit is enough when you’re fully fit let alone battling illness.

I’m also back at work on Monday. I know I will get lots of comments about having a nice rest on my holidays which will make my heart sink. I’m just as exhausted as I was when I stopped work as I’m always exhausted, doesn’t matter how much I rest. I know it’s just a saying but still it makes my heart sink just thinking about coping with the exhaustion of it all!

Hugs. Me too