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.

Hospital this morning gp this afternoon and chasing medical secretarys in between. I have multiple consultants across 3 different trusts and honestly feels like i need a secretary do others feel like this? Nobody answers their phone or your 87th in the queue, nobody replies to emails and nobody rings when they say their going to my telephone gp appointment is at 2pm but I guarantee he won't ring until 6.30 pm ish. It just takes over your life.

Thank you. Will really really try to get some good sleep. It makes all the difference. Hope you and others are doing okay.

Had lunch with 80 yr old MIL, she is more sprightly than me (which wouldn't be hard). Bit busy on town.

Back home and the medical report for PIP has arrived, they have taken some of it off me and replaced some '4's with '2' point scores and looks like will be having another 'assessment' in 18 months which is not great but keeping it for now I guess. Such a stressful process. I have had to appeal in the past and it doesn't help the health or stress levels. I have yet to head what the decision maker recommends and I suppose it might be different- we'll see. It has taken a year of faff just to do this one!

Struggling with nausea and fatigue this morning.

In theory im caring for my dad who has Alzheimers today but the reality is that the only thing I've done is to make sure he's taken his medication and now I'm sitting on the sofa hoping for the energy to put the washing out.

I've got a lot of paperwork to do for him, which I've been procrastinating on while I'm doing the day to day stuff. Beginning to feel a bit overwhelmed by it all.

Travelling home tomorrow for the weekend for a break. Sorry to be miserable, there's nothing really awful, I'm just tired. Hope everyone else doing ok.

for everyone on here who is having a struggle this week/year/continuously. It’s nice that we can talk kind of freely on here.

Today is migraine, body pain, nausea and exhaustion to follow yesterday’s insomnia, nausea and heartburn at bedtime. It’s school half term this week so I have overdone it massively. Trying to ration out being up and doing, vs lying down, but it’s very hard to do nothing. I can’t delegate all my stuff to do to anyone else. Lying down also doesn’t magically cure me so it’s hard to get people around me to understand that I still absolutely need to do it. Hey ho.

I feel for you.

My mum has Alzheimer's and lives with my dad. They live around the corner from me and I visit most days.

I have spent the morning with a hot water bottle glued to my stomach as my endometriosis and IBS pain is in a massive flare today. I am popping round to cut mum's nails soon, sounds like an easy job but mum's behaviour is very toddler-like these days and she will scream the house down before the nail clippers are even near her, it's so draining and I have to put a brave face on and pretend all is ok when I am secretly exhausted and in pain.

Chronic health issues (and menopause) and caring for someone with dementia is not a great combination is it?

@LilacLouLou I can completely relate to you saying that you're pretending everything is fine while being in pain 😢

I've just hung out dad's washing (he's incontinent too) while my shoulders are causing a lot of pain. I have a morphine patch which I find very good generally. I don't know if it would help for ibs.

I'm lucky in that I had a relatively early menopause so I'm through that now 👍

MIL has dementia too, I realised last weekend that I don’t have the energy to help her meaningfully. I mended a few of her clothes and built a seat for her to sit in the garden, but I don’t have the concentration or patience to figure out what she means from what she says.
FIL is clearly struggling and it’s so frustrating to watch, but there’s not much I can do without burning out myself, and DH is taking on the life admin for his parents while caring for me.
They’re still at the stage where on “good days” she doesn’t need much help, but those good days are getting less frequent and the bad days are getting worse.

I'm also bad today. I had lunch at a carvery yesterday with a friend, that's literally all- but conversation is hard for me and I feel exhausted this morning with pain in my back, shoulder and arm. I had to cancel an appointment as I feel too tired to go.

I didn't know you could get morphine in patches, I may ask my gynaecologist if he could prescribe them, my endometriosis pain is dreadful atm.

Mum's also incontinent now, I sometimes feel as though I work in a laundry. It's never ending.

It's called Buprenorphine patch. You can get different strengths. I started on 5 and now up to 10.
Good luck

Thank you.

@Idontknowhatnametochoose sorry to hear that you are struggling today too.

I've managed one small admin task so far. Not a lot but it was one of the things that was worrying me. I just need some motivation 😩

@LilacLouLou
My IBS was so bad, my dr sent me on the fast pathway for a colonoscopy. Thankfully, nothing ghastly was found. The nutritionist put me on the FODMAP diet. It's really helped. (That and an Immodium Plus tablet before we go on a motorway / long journey just on case I need a loo at an inconvenient time!)

It's not a nice condition is it? I've had it for 30 years but perimenopause was like throwing fuel on the fire, it's gone crazy since. Nothing I try anymore helps.

Absolutely.

And if you use my Hospital Trust’s own digital system to ‘Rebook’, the link to which they send you themselves, you never hear from anyone and get a snotty letter saying you Did Not Attend and have been removed from their clinic list.

I complained to PALS but they just forwarded my email to the latest department I’m having issues with, and they simply sent me another appointment I can’t go to - digitally!

No-one answers the phone and no-one properly engages.

Oh I am battered today. Really overdid it yesterday and then had such a rotten sleep, so everything hurts and I'm exhausted. I have one errand today that is a necessity but it's not until 2.30pm so I'm hoping to try and recoup some energy before then.

Home late yesterday from London. We were in bed at midnight. Plane had an hour an hour wait out airport. Not to bad.

Won't do anything today.
Thinking of just reading in my bed. Might di simple food today.

Oldest daughter are running around doing laundry and suitcases before she leaves back for university tomorrow. The joy of youth!

All I have managed today is to move from bed where I was barely comfortable to the sofa where I'm barely comfortable and this was only in the last 30 mins.

Lastnight I had a fairly decent sleep (for me), a few hours, not deep but I'm exhausted and foggy and I just want to cry.

This is what I get for going for a meal yesterday with my husband.

I've just learned someone I know is being diagnosed with things left, right and centre when their life is literally unaffected and they're never in their home country. I'm fighting to even get appointments and it's just shit, I'm angry. Angry at the friend, angry at my body, angry at the doctors. Just angry.

Which is making me more tired but I can't help it.

I just wrote the longest, self indulgent post and deleted it.

Very low today and very alone.

Hope you are all doing better than I am. Sorry to be a downer.

I managed to clean a bit this morning and managed my work and deadlines this week. I just can't find any joy today or hope.

@MewithME I'm so sorry. You are having such a rotten time of it. Hold on to this...
Weeping may endure for a night, but joy comes in the morning.
None of us knows the future, so tomorrow might be a whole lot better than today.

Sending whatever comfort can be found, to everyone on here who is having a horrible time with their health.
Writing this in bed in the dark with migraine and nausea.

Great idea for a thread! I think I read the other one and enjoyed it but also felt a bit sad as it just reminded me of the life I used to have 20 years ago now before the ME energy sapping monster came to stay!

Im so sorry MewithME that today is a difficult one, I understand and just want to say you’re not alone.

A quiet day today for me as I finally made it out for lunch yesterday with DH and teen DD after a bit of a rubbish week. It was lovely to get out for a bit but paying for it a little today so just been lying in the garden in the sunshine using the Merlin bird app to listen to birdsong which is a nice thing to do.

Having said that, we got back from holiday on Wednesday. Did lots of gardening on Thursday. Friend came on Friday morning and I took my 96 year olf dad out in the afternoon. Thought I'd at last got over Long Covid! Felt spaced out this morning and exhaustion hit around 11. Back in bed but hope to get up soon....

Today is a bed day. It's been a mix of sleeping and watching TV. It's pouring rain outside and I can hear it against my window. I think I'm just peopled out today as my ex sister in law is staying.