Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

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

980 replies

MewithME · 10/05/2025 14:02

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.

OP posts:
Thread gallery
14
TheodoraCrumpet · 15/05/2025 11:08

A bad day yesterday, after I tried to get ahead of myself and cook a couple of freezer meals along with that day's dinners. Differing dietary requirements don't help, as they mean several versions of the same recipe, which can be more labour intensive than you'd think. Stupid, really. Other people can cook, and even recognise the need to do it, which isn't always the case with jobs like cleaning baths or floors. I think it's key to my sense of usefulness to perform some visible function when I can, even though someone else could do it, in fact has to do it a good deal of the time. Fucked now, of course, and haven't attempted my own laps of the garden yet.

Tarkan · 15/05/2025 11:47

I’m about to walk into town for a little bit of shopping. It’s a triple family birthday celebration this weekend (mum, dad and sister-in-law). Their birthdays aren’t actually that close but celebrations depend on when my brother and sister-in-law are free to come visit as they live a couple of hours away. I live in the same town as my parents so it’s not so bad for us although DH works nightshift so trying to find a weekend together can still be hard.

I’m planning on baking a couple of cakes for the weekend too as it was a big birthday for my mum and I want to do something special for her, but that’s why I’m shopping today so I can rest and then bake everything tomorrow.

It’s sometimes like a military exercise trying to plan how much to do on which days so I don’t put myself into a bad flare again. 🙈

BlackeyedSusan · 15/05/2025 12:45

Washing up and cleaning the work surface.

Exhausted. Had to rest twice already. Cried (exhaustion and overwhelm). Was planning on going out but not possible today. I am out on Saturday and Sunday so will rest until then.

Interested in this thread?

Then you might like threads about this subject:

TheMEmonsterisreal · 15/05/2025 13:34

Having an enforced day in bed. Just can’t seem to shake off this wretched crash. Have got drinks, puzzles, Netflix and books, but can hardly bear to do anything. Going to have a sleep and hope I feel a bit less awful later.

SloppyThePoodle · 15/05/2025 15:35

Hope everyone is doing ok?

I've finished work for the day and just tried to do some knitting in the garden, unfortunately I'm really sensitive to the heat and I've had to come inside because I started to feel faint and ill. It's such a shame I can't go in the sun! I had a good sleep last night so managed to do the hoovering as well earlier, and I've staved off a nap. I had a physio appt the other day and it went really well, which was encouraging.

We trudge on 🙃

Idontknowhatnametochoose · 15/05/2025 15:46

I feel awful. Slept and then dragged myself to a hair appointment that I desperately needed. Everything hurts.

InMySpareTime · 15/05/2025 16:07

DH bought a pot of coriander so I planted it in the kitchen window box.
I usually go to a community cafe on a Thursday but I’m volunteering tomorrow at a youth group so need a rest day today.
It’s annoying having to think of the days around commitments and blocking out two or three days, but experience has taught me it’s better to rest preemptively than crash afterwards.

Realisation14 · 15/05/2025 16:51

Today has killed me. My older sister stayed overnight in the hospital for an operation and I had to collect her and bring her home this morning as she has no children and we've no parents and I'm her next of kin. Then my food shopping was due to be done today usually I have it delivered or at the very least a click n collect but the f-ing app wasn't working at all so I had to go in person and do a weekly shop, I reckon only people here would understand how much that would take. I couldn't not go as I have 2 kiddos and cupboards were bare. I am completely and utterly shattered, lying in bed reading. Thankfully husband will do dinner when he finishes work.

MewithME · 15/05/2025 17:03

Realisation14 · 15/05/2025 16:51

Today has killed me. My older sister stayed overnight in the hospital for an operation and I had to collect her and bring her home this morning as she has no children and we've no parents and I'm her next of kin. Then my food shopping was due to be done today usually I have it delivered or at the very least a click n collect but the f-ing app wasn't working at all so I had to go in person and do a weekly shop, I reckon only people here would understand how much that would take. I couldn't not go as I have 2 kiddos and cupboards were bare. I am completely and utterly shattered, lying in bed reading. Thankfully husband will do dinner when he finishes work.

I used various supermarkets. I usually manage a delivery slot because I'll use any of them but I appreciate I'm in a weird town that LOVES supermarkets. You can't go more than a mile and we need a different one.
Amazon, Uber eats and Sainsbury's all do quick delivery now. Worth shopping around if that's possible where you are.

A weekly shop...in person....the HORROR. I hated that before I was ill.

Also, I don't know if you are an MEcfs person....BUT.... Reading isn't resting you know 🫣😉. I have learned the hard way that resting...when you really have pushed it...is laying down flat. Curtains shut. I think one up from napping for me is podcast with noise cancelling earbuds and an eye mask.... reading takes a lot of concentration.

Tell me to butt out if you're not iny club...but it's amazing...we think we're resting but we're not doing it proper often!

OP posts:
MewithME · 15/05/2025 17:07

@Idontknowhatnametochoose good username 😁

My hair got so tousled recently that when I washed it in the bath, and pulled some hair out that I thought was just menopausal hair shedding...it turned out to be a squashed spider 🤣🤣

I am embracing my middle aged mad Banshee look

Hope your looks lovely at least. Sorry you're so exhausted. X

OP posts:
Idontknowhatnametochoose · 15/05/2025 17:28

MewithME · 15/05/2025 17:07

@Idontknowhatnametochoose good username 😁

My hair got so tousled recently that when I washed it in the bath, and pulled some hair out that I thought was just menopausal hair shedding...it turned out to be a squashed spider 🤣🤣

I am embracing my middle aged mad Banshee look

Hope your looks lovely at least. Sorry you're so exhausted. X

Ugh...no! Makes me shudder. I hate spiders.

I'm relieved I managed it as I so nearly cancelled. I feel very dizzy now.

Idontknowhatnametochoose · 15/05/2025 17:30

MewithME · 15/05/2025 17:03

I used various supermarkets. I usually manage a delivery slot because I'll use any of them but I appreciate I'm in a weird town that LOVES supermarkets. You can't go more than a mile and we need a different one.
Amazon, Uber eats and Sainsbury's all do quick delivery now. Worth shopping around if that's possible where you are.

A weekly shop...in person....the HORROR. I hated that before I was ill.

Also, I don't know if you are an MEcfs person....BUT.... Reading isn't resting you know 🫣😉. I have learned the hard way that resting...when you really have pushed it...is laying down flat. Curtains shut. I think one up from napping for me is podcast with noise cancelling earbuds and an eye mask.... reading takes a lot of concentration.

Tell me to butt out if you're not iny club...but it's amazing...we think we're resting but we're not doing it proper often!

I agree with this. I'm actually really struggling to read now which is hard as I love books. But I've discovered Audible which I can tolerate better especially as I can shut my eyes while listening. Still not compete rest of course but better than reading.

MewithME · 15/05/2025 17:31

@Idontknowhatnametochoose sorry! Didn't mean to cause shuddering or anything. I forget how many people are arachnophobic.

Go lie down! Phone off!

OP posts:
wavingfuriously · 15/05/2025 19:07

CassandraWebb · 14/05/2025 20:44

My symptoms have been worse today, a combination of the heat and my late night last night I think. So I felt so grateful I could work flexibly at start work at 10. And my speech was bad so I just said I wasn't available for meetings. I don't think it's very reassuring to get legal advice from someone who sounds drunk Blush

What is your medical condition if you don't mind me asking?

PoopingAllTheWay · 15/05/2025 19:07

I have multiple illness and have Covid on top
Tired is an understatement

CassandraWebb · 15/05/2025 19:15

wavingfuriously · 15/05/2025 19:07

What is your medical condition if you don't mind me asking?

I have Myasthenia Gravis. I don't mind you asking at all, I am keen to raise awareness as it is called a rare disease but I suspect it is very underdiagnosed.

I reckon (due to lack of awareness by me/people I know/ GPs) I lived with it for 20 years (my whole adult life). I was only diagnosed by chance thanks to an eagle eyed optician and also COVID subsequently making my symptoms flare just at the point I saw the neurologist. That was a heart breaking number of years to feel shame at my struggles.

Gilead · 15/05/2025 19:16

Had a Sainsbury’s delivery, shattered putting it away, I have EDs and Crones and a stoma which is currently sore and bleeding, AND on top of that sciatica! I may have been a bit snivelly today.

Orangesandlemons77 · 15/05/2025 19:21

I like the calm app for when reading is hard it has music and sleep stories which are really descriptive and gentle. I'm being referred for possible me/ cfs and had some blood tests for that today. Then came home and lay down for a bit.

VerityUnreasonble · 15/05/2025 19:23

Wfh (realistically worked from bed) today until 3, took DS to an appointment which involved walking for 15 mins each way, bought take away on the way home and have gone back to bed to listen to TV now because I'm exhausted. On the upside I can wfh again tomorrow, so although it's a busy work day I can do it without having to move much and can use my break to nap. This week hasn't been great for energy because I got over excited when I felt good at the weekend and did too much cleaning, been paying for it since.

wavingfuriously · 15/05/2025 20:22

CassandraWebb · 15/05/2025 19:15

I have Myasthenia Gravis. I don't mind you asking at all, I am keen to raise awareness as it is called a rare disease but I suspect it is very underdiagnosed.

I reckon (due to lack of awareness by me/people I know/ GPs) I lived with it for 20 years (my whole adult life). I was only diagnosed by chance thanks to an eagle eyed optician and also COVID subsequently making my symptoms flare just at the point I saw the neurologist. That was a heart breaking number of years to feel shame at my struggles.

So do I ! would you believe it...I'm stunned to meet someone else on here...

Thought those symptoms sounded familiar 🤔😉

CassandraWebb · 15/05/2025 20:30

wavingfuriously · 15/05/2025 20:22

So do I ! would you believe it...I'm stunned to meet someone else on here...

Thought those symptoms sounded familiar 🤔😉

Edited

Grin oh wow!
Yes I had never even heard of it before the optician said he thought I had it! And most of my family are medics but never clocked my quite obvious ptosis and made the connection with all my symptoms

How long have you been diagnosed with it?

MewithME · 15/05/2025 21:18

Gilead · 15/05/2025 19:16

Had a Sainsbury’s delivery, shattered putting it away, I have EDs and Crones and a stoma which is currently sore and bleeding, AND on top of that sciatica! I may have been a bit snivelly today.

Edited

That is a LOT. You can have a snivel Flowers

OP posts:
Taytocrisps · 15/05/2025 23:02

What a great idea for a thread OP. Luckily I have good health myself, but a close family member suffers from CFS, so I know how debilitating it can be, and how his life is ruled by how much energy he has. I'm sorry your lives are so restricted by your medical conditions. You're all heroes in my eyes!

Tarkan · 16/05/2025 00:19

I couldn’t keep my eyes open earlier and ended up napping for around half an hour just before 9pm. The ultimate danger nap. Who knows when bedtime will be now!

Realisation14 · 16/05/2025 07:30

What is everyone managing today? I have an eye test at 11.30 that will probably be the height of my day but I'm glad after yesterday.