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.

Terrible fatigue yesterday, clearly been doing too much. Spent a lot of time watching YouTube and dozing.
Today I'm a bit better, but still need to nap this afternoon. Hope other people are doing better xx

@Jabtastic I had Alemtuzemab a few years ago so not on treatment. But my last MRi had a couple of new lesions on. So got another this PM to compare with it.

ME/Fibromyalgia/FND & having better days than the last 4 years so happy with that but still not 'normal' Awaiting endoscopy but suspected coeliac disease so going gluten free has helped. Today I managed to get up with the kids for school (1st time in about 2 years), took my eldest to her tutor & going to Costco for some apples. Might even manage to make dinner. Tues/Wed are always super chilled for me so making the most of my husband's day off

Oh going to catch up on this later. I was out for family dinner yesterday so have an activity hangover. I'm increasing one of my meds at the minute (duloxetine) so going through it 😰

Is that like Mavenclad? A one off treatment? I hope they get you started on something new ASAP if you are going to have treatment.

Well my body is just not happy. Despite a lie down at lunchtime, some meditative breathing and trying to be careful, I have completely blown my energy budget. I think I'm in a bit of a crash, so heart rate is way higher than normal even doing nothing, and my HRV is way lower. (I used the visible armband and app).

I think the heating hasn't helped but it's paybacks from last week plus perhaps still getting over the virus I had at Easter. I suspect it was covid.

I hate it. I have a tremor today and palpitations and feel like bees are buzzing inside of me.

I think it's menopause in the mix too.

Must try for an early night. 😔

It's funny as I recently asked DH if his legs fizzed/buzzed and he looked at me like I was mad. I assumed everyone felt like that!

Hope you manage to calm things down and get some meaningful rest

Today I did some phone calls for life admin and then had to lie down flat for the rest of the time. I had to go out in the car without sunglasses on earlier on even though it was cloudy and now feel completely wiped out by too much light.

@Jabtasticno idea. Not heard of that one. I had it for five days the first year, then three days the next. And that’s it. They will discuss the next steps if there are new lesions on this scan. It’s kept me well though so far.

@Phunkychicken no, it's an MEcfs thing. Possibly a menopause thing too. It never happened to me before I got MEcfs though. All my symptoms get worse when I'm in PEM. The list is endless as I'm sure you know.

I get the nervous system issues much worse when I'm crashing. I don't always have a tremor.

I get awful nerve twitches too.

My muscles all feel weird just now. Really weak. It's hard to describe. There's pain but it's different to my joint pain. I get confused about pain and sometimes find it hard to describe because there's different types. I think this is like lactic acid build up.

Mainly I want to cry today though but I'll try not too because that uses energy I don't have.

Downer day for MEcfs awareness day. Sorry to be gloomy everyone.

Hi all, Just found this thread whilst I am lying in bed feeling very unwell. I have long covid and POTs. Its nice to not feel alone but im sorry you all feel so crap too. I have had this since Covid in Dec 2020 and still trying to stabilise my health but its not easy. I am in a crash after feeling stable for the past few weeks and feeling like I was making progress but I know I have recently tried doing too much and had some unexpected family things thrown into the mix . Im an OT so I know about pacing etc but knowing the information and putting it into practice are two different things. Hope tomorrows a better day for us all

I know what you mean about feeling weird. I tried to describe it to my husband and all I could come up with "generally ill". Like something bad will happen if I don't go and lay horizontally, but I don't really feel tangibly faint or sick?? I also get the internal tremor feeling, mainly when I wake up in the night. I had no idea that was an ME thing.

I spent ME awareness day feeling tired, and having an afternoon nap. Very apt I suppose. I'm sorry you feel so down today, I'm not sure what to say that will help but I just want you to know I understand how you feel and you aren't alone.

Yes it sounds similar to Mavenclad/Cladribine. They might move you onto Ocrelizumab (Ocrevus) or similar. I hope you get answers soon 🙏

Aging (old age) got me today and humid weather 🙃

Tomorrow is another day everyone 👍

Hello from another OT! 👋 I should practice what I preach 😂 x

Driven 90 miles.
One load of washing.(Not yet hung)
Some washing up
Shopping
Put chilled stuff away,
Wiped down some fridge shelves while tetrising the fridge.
Dealt with school. (3 phone calls 4 emails)
Experienced kids meltdown
Had my own later.
Probably triggered dd's meltdown but left her at her dad's.
Heated up tea
Rested.

A better day. (Autistic, hypermobile)

I'm autistic as are my two children and we are used to meltdowns in the house 🤦 wish I wasn't

The first one came out of nowhere. (From my perspective)

Only later have I discovered they didn't sleep well and their alarm didn't go off.

Mine was contributed to by this and someone not listening when I said they were causing sensory overload.

It's so true about the difference between knowing what is the best thing to do and putting it into practice!

I find it really hard to stop before I have done too much. My body even gives me clear warning signs (my throat gets heavy/my speech starts to slur etc) yet still I ignore it sometimes! Often when I don't want to let someone down

I can't go out to work due to caring for two autistic teens and my own disabilities. I need to pace the race ... That requires some days of doing fuck all and staying in bed. I have had to drop many many things I want to.do. do the bare minimum. If I don't I end up having to spend time in bed because I can't move other than to go to the loo.

Thanj you @wavingfuriously . Here we are. New day ahead. I have woken up feeling 'buzzy' and weak still but perhaps a bit calmer after a bug fat cry last night. I've got to go into work for meetings today and I look shocking. Just having a coffee before the attempt to make myself look presentable. 🙈

So stiff and sore today but I have to take my son for a haircut and I really have to hoover downstairs as the floors badly need done. Other than that I am going to try and rest and read for as much of the day as possible and get a bath later.

Woken up feeling stiff as a board today. My neck is also doing that thing it does where it creaks like an old door. Physio appt this afternoon, I still have hope even though I've been fired by at least 3 previous physios 😅 we persevere...

I put all my shopping away.. now back in bed for a bit.

Two words.....robot vacuum!