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.

This thread is a revelation. So many similarities. That is exactly how I feel about the need to lie down too.
That same feeling also starts up if I sit down upright without moving for too long, too. I thought it was caused by the POTS because I can walk that strange feeling off, tho I have to be careful not to become exhausted. So walking is only a very temporary fix annoyingly. But then I have been puzzled by why I don’t actually faint with it. So thank you for mentioning that it is a feature of ME/CFS.

For me, if I just push through the ‘need to lie down urgently’ feeling it can mean a bad day of PEM tomorrow or a migraine later today. Writing this lying down flat

Hope today is as best as it can be for all of us on here

We all have to learn not to push through. Though sometimes it's unavoidable.

Something I find helps keep my heart rate in an ok level is either mindfully pacing going upstairs....so I don't just march to the top in one go. I got a couple of steps and stop....breathe slowly. Also, walking. If I can go consciously slow. Again noticing my heart rate and stopping if it starts pounding... It can help.

I've got my visible armband. I'm pacing better today so far. Slow walking and lift not stairs.

I always think the biggie under all of it is stress which again, with my life, is unavoidable but something to work on where I can.

And also trauma. I've done talking therapies but have recently start looking at sound baths and have bought the nurosym gadget to try and help my vagal nerve. I know I'm very easily kicked into fight or flight. The nurosym certainly helps me at night...not sure long term yet. We shall see.

100% agree on stress exacerbating symptoms. I have definitely had PEM after being in stressful situations. I feel like the tolerable bar of experiencing stress before it will cause me a big health impact, is a lot lower these days too.
Interesting to see that a lot of us on here have DC with additional needs which can be physically and emotionally very challenging. as well as managing our own health conditions and any ND we may have. It’s a lot.

Hello 👋 Its so much harder than it seems. I was so naive about pacing before. I never thought it was easy but I had no idea how hard it would be. Its true that unless you experience something you can not truly understand it. I will be such a better OT if I ever get to practise again!

@CassandraWebb
It so hard. People tell me 'just rest' but resting has consequences. It would be fine if I could delegate what needs to be done to someone but it just builds up for future me

I have learnt that I am really bad at internal sensory processing but I am slowly learning to listen to my body. Its just so hard. I also get the slurring. I struggled to string sentences together today and I am sure people must have thought I was drunk/on drugs

I have fibromyalgia and I’m just coming out of a flare. I’ve done way too much today so I know I’ll need to rest tomorrow to avoid flaring again.

We were having friends over for a barbecue today and because of my last flare I’ve been quite behind with the housework so I spent the morning and afternoon cleaning the kitchen and bathroom (little bits at a time with rests in between at least). I’d asked my 21yo DD to do the bathroom yesterday while I was out and I came home to find the laundry moved to the basket in the kitchen and that was it. So had to clean the bath, sink and toilet today and then scrub the floor. I couldn’t find the pad for my flat mop so the floor ended up being a bigger job than I expected. 😫

I then went out to the supermarket to buy food for the barbecue. Just bought pre-shredded lettuce and sliced burger buns to make things easier for me though.

Thankfully the time with my friends was lovely and after all that work, none of them went inside to use the bathroom anyway. 🤦🏻‍♀️

I totally understand that.
And it's not relaxing or enjoyable or easy on mental health to relax when you can see jobs building up.

I've just come back from an incredibly rare night out at the theatre. It felt so weird to be out! I am definitely having a good patch at the moment health-wise and just need to not get carried away.

But I struggle with the invisibility of my condition. I didn't bring my stick because we didn't have far to walk, but then I feel bad using the lift etc. Or twisting rather than standing to let people through to their seats (but I get very ill very fast if I stand up and down a lot in quick succession - I have learnt that the hard way).

But the thing I find hardest is not being able to clap. I did clap a little at the end and even that was enough to affect my speech and swallow. It feels so rude not to join in the applause! I don't know if anyone else struggles with weird "trivial" things like this?

@CassandraWebb I know people have various conditions on this thread, but yes... clapping is tiring. I haven't been out to anything like the theatre for years. I wouldn't cope at all.

I can cinema when I'm doing better with loop earplugs to turn volume down and comfy recliner seats. I get noise and light intolerance. I tend to drive with the sun visor down all the time. It helps take the edge off. When I am not doing so well but well enough to drive, I can't have the radio on. It all adds up.

I hope the play was good 😊 👍🏻

I have light intolerance but am ok with noise (partly because I am hearing impaired). My condition only affects my neuromuscular junctions so thankfully it doesn't come with the brain fog type elements. It can be very disabling though, if I have a flare or over do things I can be unable to hold my head up or speak or swallow. It's quite wildly fluctuating!

I find this very interesting as a concept. I had ME terribly for 4 years and now don't. With ME I absolutely could not push through and if I did it set me right back. In fact I had to go under active to recover.

That has completely gone (unless I ever mistakenly eat any wheat) but I realised afterwards that I have fibromyalgia and have done since I was a child. It took me years to realise not everyone was in pain all the time!

But I can push through and should push through that pain. I do now a lot of sport and the first 20 mins can be sheer agony but the. I feel 100 times better.

Went on a short walk, did some painting, made some soup

I do fake clapping as it hurts so much 😂.
Noise and light when I'm having a flare up especially in the morning is like having my head drilled.

Same here! Ear plugs or headphones 🎧 at the cinema. I sit in the recliner seats and always take a blanket so I am super cosy! I get some funny looks.. but, whatever! I also get funny looks for sometimes using a walking stick, as obviously ladies in their early forties can't possibly need one! 😱🫣

Having to avoid noise and light must feel really isolating I expect?

Although I think I stared at a lady our age this evening and it was only because I was admiring her stick and wondering if I could justify "needing" a new one

Blanket is a great idea, I never get why cinemas are the same temperature as a freezer

I'm lucky that it's only when I flare up so a couple of times a week and often will go after say 2pm or if I go to lie down for a couple of hours it's tolerable. Was shit when the kids were little as they don't really care do they babies😁.
My work is phenomenal as they let me work around my flare ups so I can work full time

Haha yeah you can't really ask a tiny child to be quiet!

My work are also great at letting me work flexibly so I can get the hours in around the random fluctuations of my symptoms. It makes such a difference doesn't it

That sounds nice 🙂

I keep a stack of them in the car as my youngest (autistic) will wrap them around her for emotional support and sometimes insists on walking around the town centre, eg to the library, wearing one. Cue more funny looks from people who don't get it 😔. It makes her feel more secure, which leads to fewer meltdowns, so I tolerate the funny looks, just about... People wouldn't look twice at someone with a hearing aid / assistance dog etc. Invisible disabilities suck! We have tried sunflower lanyards but the kids find the material itchy and my youngest won't wear a badge as she hates shiny things 🙃

I have a sunflower wristband (silicon wristband) but it's not very noticeable, but I wouldn't be able to cope with a lanyard either, just too annoying

Best Xmas present a while ago was my outdoor oodie. It is basically like wearing a blanket.. huge pockets so don't need a bag. I love it for the cinema. It's like a cocoon.

Hope it’s okay if I join in. I’m still feeling delicate after a really bad crash on Sunday, so have taken it quite easy today. Did a couple of loads of washing and pegged them out on the line, then sat in the sun for a while and read. Planted up a couple of pots after lunch and was absolutely knackered afterwards. The type of fatigue that suddenly hits with a huge bang and you have to lie down immediately. When I’m like that I can’t speak or turn over in bed, I have to lay completely still with all my limbs very straight. It feels as though my heart is too weak to push blood around bends 😂. It comes with various joint pains (especially my inner elbows for some weird reason!) I was incredibly tired but can never sleep in this state. It passed after a couple of hours, and I got up and made a salad for tea. Watched tv for a while and am back in bed again. Actually, on reflection, it was not a bad day, because I did at least do a couple of productive things and, for me, didn’t pay too bad a price. Everything is relative.
Finding this thread really interesting, it’s great to hear what other people can manage to do, and learn some more coping strategies.

Morning. We've moved offices and it appears my new commute is about 15k steps. Conlmbination of that and new office chair mean I'm very tired today. And incredibly sore. Need to make sure I move today though else I'll be worse tomorrow.

I take amitriptyline plus an anti histamine to help me sleep but I'm waking up later, groggy and feeling untested. Will knock the second one on the head and see if it makes a difference.

Off to Google exercises for sciatica as the new chair (after working from the sofa the day before which is always a bad thing) has triggered it off

Hope everyone has good days and are able to do what you want/need

Oooh! How much do they cost?