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.

Abdominal pain and peri here as well, a lovely combination. Well have moved from the bedroom into the sitting room with a coffee it's always a relief when dinner time is over really

I love it when I'm on my own and just have a bowl of cereal or something and no-one else needs feeding.

I think peri is making everything worse for me too. I have severe mcas which I think the abdominal pain is linked to, as well as a host of other things. I'm saving up to see a specialist. The fluctuating hormones associated with peri can affect histamine levels, which in turn affect depression etc.

The NHS is pretty useless ime when it comes to histamine problems. And the m.e of course.

It can all flare up and the mental and physical can be so interlinked can't it

It definitely is. The depression can't be separated from the physical problems and vice versa. Inflammation and histamine cause depression as much as anything else due to the impact on the brain and stomach. It's a shame so many doctors split conditions off and examine in isolation.

Didn’t sleep last night.
anyone got any tricks
Take magnesium glycinate
Will do relaxation exercises tonight.

Still in ned here with copious sups of coffee, pain quite bad. Going to get up soon.

*bed

Working but also trying to take it as easy as possible after a tiring and stressful day yesterday having a CT scan. And trying not to brick it waiting for the results, because although my GP doesn't seem worried about my symptoms and said he was just ticking the boxes, it's still hard not to worry.😣

Pretty sure peri is a huge part of my issues right now too. Mental health has been like a rollercoaster and I’ve been an utter cow to DH on more than a few occasions. Thankfully he’s understanding but I still feel awful when it happens.

I’m finally back to my back pain Pilates classes tonight though. They do make a huge difference in my mobility but I know I’ll be stiff after the first few as it’s been months since I last went.

Melatonin helps me.

I am so tired and in pain. I am waiting for painkillers to work as I am of to lunch with a friend. Would rather stay in bed with a cat tbh.
I have a shift tonight. I am working 16 hours this week. It isn't much but it feels too much.
I thknk the worst is that it never seems to end. Every day is a battle.

melatonin has really helped me too at night

I’m also working today and super tired. Can’t wait for the weekend so I can get back to bed!

Melatonin helps me too but I’ve found I get used to it so need a regular break. I find a sleep meditation sometimes can help a bit.
Or I sometimes just listen to a book on audible, just as I don’t always have the energy to read at night but I generally fall asleep which is a bonus! ( Not so much the next day when I have to go back a chapter though! )
I recently switched my magnesium for threeonate complex ( combines Glycinate/ theonate and elemental magnesium in one ) and I’ve slept so well recently which is very unusual for me so it must suit me better.
hope tonight is better for you

I have had a bad time with anxiety today, the only thing which seemed to help it a bit was a hot bath which was relaxing. I'm still waiting the result of a PIP review and think it's that and also peri joining in.

Sorry to hear so many of you are having a horrid time. I am trying to stabilise my health after doing a bit too much and feeling a flare in symptoms. Trying to avoid a crash so spent today resting a bit more. Seen a general improvement in my baseline though so that's good news. I know I am lucky but finding it hard to find the right balance

I'm flaring badly. I feel so fed up. I managed my day in the office but then was so unwell I could barely talk to my children by the time I got home never mind spend any quality time with them. And they are amazing children, I enjoy their company so much.

I hate it because once my nerves stop sending signals to my muscles I can't willpower my way through at all. I am basically paralysed and it's horrible.

I am working at home tomorrow but hoping I can rest all weekend while the children are with their dad and that will do the trick. But I have so much I would like to do at the weekend.

I slept like a brick last night, euphoric!! I get one of these type sleeps once in a blue moon, so I feel fantastic this morning (I know it won't last) but I'm going to make the most of it while it does.

Hi all, how is everyone doing? I've been having a hard time lately feeling lonely and socially isolated. There are so many things I want to be doing, but it's so difficult as I have such severe fatigue. I've not recovered to my baseline after covid almost a year ago. ME is just the most awful illness and I am so fed up of it.

How do you all avoid loneliness and have a social life? I can't even join Facebook group as I have no online presence and they reject me because they think I'm a bot!!

It's really not easy.. I'm also severely affected and have been for years, although better than I was. I only have a handful of different friends and I try to meet up for a coffee with one every few weeks or so. It takes me about 3 days to recover. In between I text people although it can take me a while. Two of my local friends also have m.e and I rarely see them. I go on FB but only to answer the odd question in a group. I prefer direct texting with friends. I can get lonely especially in the evenings but I'm an introvert so I'm OK with my own company more than most I guess. I have help at home which helps too. But my friendships are important so I try to keep in regular contact even though it's hard. Oh and I like sending and listening to audio messages when I'm not able to type.

@SloppyThePoodle and @Idontknowhatnametochoose I've just joined the ME Association discord. I am familiar with discord as I run my own too. I thought it would be too busy but actually it's been lovely.

It's only a week old but everyone is really friendly and it's a nice space. Might suit you ?

Pm me if you want the invite code.

I've just removed it from the post because perhaps it's risky posting it on MN. I wouldn't want to cause them an issue.

Hello all. Another week done.

So far today I woke early and felt so exhausted. I put my podcast on and went back to sleep. I'm listening to Agatha Christie biography by Lucy Wotsit. I am a lifelong AG fan so I'm really enjoying it.

The shopping arrived bang on time. No spillages this week unlike last time, so that's all put away.

I had a dizzy spell while putting it away though so I have come back to my room to sit on the bed and rest.

Looks like thunder clouds are gathering outside. I don't mind. DS is having a wobble today with his autism and doesn't want to leave the house. He's had a fall out his his friend (use the term loosely) who had ADHD. The two of them clash with their needs so much. So tears and drama at 9am was hard work.

I am going to try and find a film for us to watch later.

I love Agatha Christie too! Not read the bio though. I hope you find something nice to watch and your son calms down bless him.

My period started last night so got worse fatigue plus horrendous back pain partly from that and partly from cleaning two shelves yesterday thst involved bending. Just resting in bed.

I think I have a cold so my symptoms are bad again, my neck is very weak and my voice is bad . I'm spending the day resting and hoping that does the trick. I have a trip to the theatre on Tuesday and my daughter has a dance festival next weekend so I really don't want to be ill. I feel gutted I have to rest as there is so much I want to do with my weekends.

I'm currently reading North and South by Elizabeth Gaskell, it took me a while to get into it but now I am really enjoying it. Fascinating and all the descriptions and discussions of capitalism and strikes etc still have so much relevance today. I am very grateful for my kindle as I can increase the font size when my eyes are bad.

Does anyone have any good new film recommendations? Something funny or lightweight and fluffy ideally! I will need a break from reading soon and I am not sure what to watch.

I’m sitting waiting for a text from the pharmacy to say my prescription is ready to collect. I ran out of my meds yesterday and I’ve been in absolute agony since then. They said it would be this afternoon so hopefully sorted in the next couple of hours.

@CassandraWebb The Phantom of the Open on iPlayer is a lovely film. Mark Rylance is wonderful 😊

North and South sounds good. Might add it to my audiobook list. I find actual reading tricky just now. Wasn't there a TV adaption of it? I might have a look for that. Could watch a period drama. In the mood.