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.

Have you checked it isn't set to "shuffle"? I've heard of people doing that by accident before

It's more or less how an audio book works here!

Yes. Still working my way out of bed. No fun today.

😂 No, it's definitely me. I just fall asleep then try and go back to where I think I was but sometimes I get it wrong. I'll then start listening again from further back and come across a bit way later that I've definitely heard which I thought already happened 🫣 I even try and put the snooze thing on so doesn't go beyond the end of chapters.

I might just have to start the whole thing again! Haha.

I'm on my second coffee now. I've had some breakfast.... Has anyone tried chocolate butter?Omg. It's as dangerous as crack !. Instant addiction. Luckily it's not widely available!

I've got the shopping coming between 11-12 so I had better get dressed soon and do something with my hair or I'll frighten the delivery driver.

I'm planning olympic level pottering this weekend. I would like to watch a disgraceful amount of TV and very slowly clean the house in intervals.

Has anyone seen Yellowstone? I've just got into it.

I'm a bit weird. When it's sunny outside, I like to watch stuff with gorgeous scenery on TV. Makes it seem more bearable that I'm indoors and not hiking up a hill.

I’ve had about 3 hours of broken sleep. I’m quite tender after my full body massage yesterday, it was a really bad one for pain during it for me so I knew I would be sore today. It’s worth it in the long run for me though.

Heading away to visit my parents this weekend in a couple of hours. Thankfully they got a lovely new comfy bed in their spare room so I should sleep well there and won’t wake up in agony like I used to.

Off for a slow wander to the garden centre today for some hanging baskets. Then I'll be laying around listening to a Harry Potter audiobook. Seeing some friends tomorrow for the first time in ages so I'll need to pre-rest!

Ohhh I love a garden centre potter. I bought my hanging basket early this year and it's lovely 😍

Enjoy.

I'm just in bed although hope to sit outside if it warms up. Been in a bad relapse since my mum died at the end of 2023 and then a lot of stress last year has worsened matters.

Sorry to hear that, hope you get outside for a bit, it looks lovely out.

I have my 80 yr old MIL coming over, will take her for coffee and to the local shops, she usually has more energy than me however!

Thank you. I am outside and it's lovely to feel the sun on me. I love the summer.

Enjoy the shops!

They’re a bit messy but I’m proud of my cakes. Especially since my hand mixer has gone missing! I always keep it in a box on top of the fridge, the mixers were in the drawer like usual so there’s no reason for the mixer itself to have vanished. So lots of hand whisking was done instead so you can imagine the pain that caused.

Carrot cake and Victoria sponge. Not going to win beauty contests but as long as they taste good. 😁

They look amazing @Tarkan 😍

I love a vic sponge 😋

I have just had a great nap and now I have TV again and crisps. I am so hungry just now. Is that a menopause symptom? I'm gonna be size of house if I keep this up 🫣😂

I forgot it's Eurovision. I will watch a bit later and text my friend.

I forgot to take pictuces of my baking. Those cakes look amazing!

I have done chocolate cake for 24 people and 12 vegan/glutenfri blueberry muffins.

Next - tea which is a salad, burgers and fries.

I am not too fond of kitchen work. It takes so much energy but I like the results.

So glad you made it outside.
It's so horrible when grief also makes your health worsen. It feels unbearably cruel.

I accidentally slept most of the morning

I took my daughter to her dance class came home and planned to read a bit of my book then get on with some jobs. But I didn't realise the back door was open and it was quite cold. I have this weird thing where if I get cold I go all sleepy and into almost like a coma. I've never managed to figure out what it is. I don't think it's related to my Myasthenia as I've asked in lots of Myasthenia groups and not had anyone say they recognise it

This afternoon I did 20 minutes of sorting out the accumulated chaos of the playroom , they are older now and we want to turn it into a nicer space. But twenty minutes sitting on the floor putting things in bags was enough to make my neck go weak and my speech go weird. It's so annoying!

Oooh I would love a vegan blueberry muffin recipe if you are happy to share?

Here you are.

120 g gluten-free flour, e.g. rice flour or buckwheat flour
80 g sugar
2 tsp. baking powder
1 tsp. vanilla sugar or flavoring
50 g vegan butter
150 ml plant milk
130 g frozen berries, e.g. raspberries or blueberries.

Preheat the oven to 180 degrees.
Heat the fat and plant milk in a saucepan and let it melt.
Stir all the ingredients (except berries) together in a mixing bowl until you have a uniform mass.
Grease a springform pan or 6 muffins forms with a little fat (vegan butter or oil) and spread the dough in the pan
Distribute the frozen berries on top of the dough and press them into the dough a little
Bake for approx. 25 minutes.
Let the cake cool completely before serving.

You can but dont have to sprinkle with powdered sugar, chopped nuts or toasted coconut flakes
Serve with vegan whipped cream
Serve with vegan yogurt mixed with a little lemon zest and vanilla powder.

Thank you ☺️

Duolingo done - bedtime!
My legs hurt. I hope I can sleep from it.

Godnight! I hope you will have some rest too.

Another day not leaving the house. I've had some time in the garden with a book though at least. Neighbours are chatting very loudly as usual so have had noise cancelling headphones on. I would rather be listening to the birds and the breeze in the trees but can't have everything. They're elderly and deaf so they shout.

I realised today that I've not gone further than my work office 15 miles away since January. I have such a small world. It's hard sometimes. Friends are sending photos from their weekends away.

It's hard, acceptance, isn't it? And I know I'm doing better than most with MEcfs.

I'm WFH tomorrow and then my busiest week of the year lies ahead so at least I have hopefully regained some energy this weekend.

Today I left the house, I was working at a country fair for the afternoon. I definitely did not have enough rest beforehand and am crashing hard already. I do not have high hopes for achieving anything tomorrow either.
I feel so unprofessional letting my illness affect my work, but I am finding it increasingly hard to mask my difficulties and “push through” like I used to.

I’m late to this thread, but today felt quite special for those of us with ME/CFS because it is the annual Blue Sunday tea party. I’ve been taking part in various ways for several years now. For those who haven’t heard of it, it’s a really inclusive event which basically involves eating cake, drinking tea and wearing something blue if you can. There are various social media events if you feel up to it and you can donate to ME charities if you like. Some years I’ve joined in from bed but I was feeling ok today and we had some cakes and scones in the freezer so set up the table in the garden with nice china and had a tea party with DH, DCs and me. I’m lying in bed now but it was such a nice thing to do

I love the sound of your ME/CFS tea party @Bitesize123 ! I haven’t heard of that before. However, on the subject of cake, since I did have a rare, small amount of energy today I made a cake for a neighbour, an elderly gentleman, who is very kind to me.
That’s all I have managed to do. The rest of the day I’ve just read, done puzzles and watched tv.

Aww this is lovely to read about. Happy Blue Sunday I hadn’t heard of it before.

We’ve had mother in law staying with us for a week and took her home today after a pub lunch (she treated us as a thank you for having her to stay). Home and shattered so quiet evening for me. Was told this week I’ve likely got chronic pain syndrome and maybe fibromyalgia on top of rheumatoid arthritis.

Now waiting for appointment with pain clinic at hospital an hours drive away (our “local” hospital!) to get advice and a management plan in addition to increasing pain meds. Also been referred to social services for home assessment by OT and for equipment/aides to see what they can give me to help.

Got to get everything in place before I can apply for PIP which I’ve been advised to by friends and some relatives.