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.

@Stressybetty if you can take some time off, maybe you should?

I've had a week off so far.... actual holiday away next week.....all I've done is catch up on chores I can't do when I am working and I'm not full time.

Is there any way you could reduce your hours even temporarily? Sounds like you need a break.

I haven't got a cleaner but wonder if I should sometimes.

@MewithMeCant afford to reduce hours, will have a look at the leave tomorrow, not much available until Sept really due to term time workers etc. I think the issue is from when we moved rented house in April. I got persuaded into us doing everything ourselves by DH, renting vans, moving everything, cleaning the old house etc. I hurt my knee doing it and still can't kneel as there's fluid around the kneecap. We've moved to a 3 story house so stairs everywhere. I've definitely not got back to the previous energy levels I had before the move. We have stressfull stuff long term stuff ongoing in the background too as well as MIL living with us. Me and DH juggle her care between us, she has vascular dementia around stage 6, plus we have dogs. Cleaner not really an option at the moment. I have anxiety also as well as CFS and I think I've just not recovered from the move. Feel bad saying it as there are so many with CFS ME worse off than me who can't work etc.

If you can get the days off I would for sure.

Had a really rough night. Waking a lot, nightmares all night long causing me to wake shaking/panicking. I have PTSD so the nightmares hit me from time to time.

I'm sorry to hear that. I also have PTSD, I woke up in a panic today. It is hard when it disrupts sleep making you tired as well, tired but bored I call it.

It's raining today which I am liking, making me feel less guilty about being home and not out in the sun etc.

@Stressybetty I'm not surprised you're stressed. If you have MEcfs then you must be careful. I think you need a talk with your partner about what you can and can't do.

You can't just push through. You risk making yourself worse.

Stairs are the worst for me. My heart rate spikes but sometimes takes a while to come down again. If I ever move house again, I'm going to think about a bungalow.

As it is, if I have to do lots of stairs, then I take it steady and stop after every few steps. I also do this if I'm having a bad day/crash.

Is there any support you can get for your MIL?.

Sounds very hard.

If you can't take annual leave, consider being off sick. You are unwell. It's not untrue!

@MewithMEthank you, I'm actually off sick today, felt very rough this morning. I've done absolutely nothing today other than get MIL up and sorted out. MIL sleeps a lot till until around lunchtime/ mid afternoon which really helps and DH is home all the time as her official carer. I WFH around 70% of the time. We've been told by GP about admiral nurses etc and BIL is a consultant psychiatrist working with dementia etc albeit in a different county.

Not advertising them but just to say since moving house how invaluable justeat have been. Crazy paying 99p (without a tip) to have a few groceries dropped round in less than an hour. Has saved me so much unnecessary activity and stress. Also just putting in a normal supermarket delivery for the bulky heavy stuff now and again like milk, tins, cans of pop, bottles of squash so I'm not lugging it all in and out of the car etc. We love Lidl and can't get delivery obviously but seems to be much easier to do a monthly shop there with stuff to freeze and then weekly small top ups for fresh stuff either on justeat or online.

I live in the top floor and find Ocado good. You can get a midweek pass for £5.99 a month for as many deliveries as you want and they bring it up the stairs and use bags. (they take bags back as well) if it is cheaper at Tesco they then refund the difference and you can use it off the next order.

They do pair with M&S which can be nice but I miss how they used to with Waitrose. Waitrose also deliver and it is £2 for a budget delivery.

I am in Disneyland Paris. I've borrowed a wheelchair. Can you believe it. Me in a wheelchair. But I'm getting to see stuff I wouldn't otherwise, there's absolutely no way I could walk around even some of this. It's mad busy and warm.

I've only been on one ride because I can't be bothered standing in any queues. But I'm enjoying watching the kids and watching the world go by.

I imagine there's still a massive crash waiting just round the corner but I'll deal with that when it happens. I think when the kids go back to school (I'm in Scotland so only a couple more weeks) I'll just sleep every day.

Aw @User57713 ... sometimes we just have to live a bit! Enjoy 😍

Anyone been on a uk break recently? I really need a short break. I'd like a nice old fashioned hotel within a couple of hours drive of London.

Had a lovely couple of nights at the Dales Hotel in Upper Sheringham last year but it's too far to drive. It had an Agatha Christie vibe - wouldn't have been surprised to find a body in the library 😁. Would love a hotel with a hot tub. Preferably one without much walking to get around.

Any ideas anyone? I'm at the end of a 10 day stint looking after my dad and utterly shattered.

Maybe i need a spa break 😁. So sorry @MewithME, sounds like a very difficult situation 😔
And @FishFlaked yes stress also affects me physically

There are some nice ones near Bath perhaps, depends how much you can spend. I like the thermal spa in Bath

Ooh fab thanks @Orangesandlemons77 will look into that!

How is everyone?

I'm off on holiday tomorrow. Bit gutted at the weather forecast. Knew I should have gone south and not north! Looks like we'll lose a day to the storm on Monday. 😭

I'm lying on my bed half packed. I'm getting a fair bit of pain at the moment. I have a few weeks off work and feel like it's been a waste so far. I've just done chores and appointments. Beginning to wonder if I'm a bit depressed. I just don't have any enthusiasm even for my holiday. Last two summers have been great but I don't feel the same this year.

Maybe it's menopause on top of my usual stuff.

Feeling very meh!

@BerfyTigot hope you find somewhere nice. We always self cater so can't recommend a hotel I'm afraid but I'm sure two hours from London can take you some gorgeous places. Id love to do the Kent coast but too far for me.

Also think you may have mixed me up with another poster. I am a moaning sod but don't think I have anything especially hard just now.

@Stressybetty is probably who you meant. Hope things are ok as they can be today.

@MewithMestill off sick, doing very little, exhausted, glands up in neck and head really congested, having time to rest is good though. Hope you manage to enjoy the holiday tomorrow. I'm in peri-menopause, think it has a lot to answer for!

Glad you're resting Betty! Hope you get back to your baseline soon. X

@MewithMEi think we are a similar age and it’s impossible to keep your enthusiasm up when you have so many challenges so don’t be too hard on yourself! I used to really look forward to holidays - now I spend my time wondering if I will be able to have enough energy to get out of bed, will I make the airport (if it’s abroad), will I even enjoy it! As you say, that on top of perimenopause is just delightful!

I was thinking today how grateful I am for this thread. I’ve lost so many friends since I got long covid/ME. Because I can’t make the effort to see them, I’ve slowly been dropped over the years (I do get it and I don’t blame them) so it’s actually done me a world of good having this thread where we all understand each other!

I had the day off work today and I booked the dog into daycare as I was so exhausted I knew I couldn’t walk him. I’m going to have a glass or two of Prosecco tonight. I don’t normally drink as it always makes me feel worse the next day but i figure we have to live a little!

Aw yes, it is important to have people who get it and despite some bumps lately with MN, I've been here a really long time so I like having a little space in my usual online space to chat with you all.

It is hard keeping real life friendships going but I am lucky to have a few who are really supportive. They don't always understand but they do try.

Anyway, I'm not doing anything more today apart from a bath in a little while.

Looks like this storm will force us to have a day indoors on Monday but perhaps it might be a blessing when I'm tired! Enjoy your bubbles @ChampagneRose ...apt for your username!! 🥂

@ChampagneRose hope you're feeling better, don't stress about booking the dog into daycare, they'll have loved playing with different dogs.

Struggling with terrible PEM today and yesterday. I'm on the sofa binge watching Annika. Hope others are doing better

Hi everyone, hope those having rough days just now can rest and find something that lifts the spirits a tiny bit.
Im also struggling massively after a week away in Scotland although entirely expected. I paced pretty well after my initial crash on day one but obviously pushed myself a lot more than at home.
Only came back yesterday so I need to be patient and allow myself to get over the journey. We were actually home within 4 hours but the airport was so busy, loud and crowded and causes such sensory overload even with assistance all the way and noise cancelling headphones! But its been lovely to spend some quality time together with my teen and adult son and make some memories. I’ll try and hold on to those thoughts to get me through this crash.

@MewithME hope your holiday goes as smoothly as it can. Try not to put too much pressure on yourself (though I’m a fine one to talk tbh!)

@ChampagneRose hope you enjoyed your bubbles and sounds like a good plan to have a total rest day. Dogs are fabulous but sometimes we need to just look after ourselves.

@BerfyTigot & @Stressybetty sorry to hear things are so tough and hope things start to settle very soon.

I’ve been having a fun time with fibro flares and so much pain. I was at a festival evening last Friday and due to lack of seating and no folding chairs being allowed in I ended up flaring badly from that. Just starting to recover now but I decided to stand for a whole football match last night and paying for it today.

I was also out all day yesterday as I had to head to the big hospital to have a heart monitor fitted for the weekend. I doubt it’ll catch one of my SVT attacks as they’re so random when they happen but at least I know they’re keeping an eye on things to make sure other things are all as usual.

@Hotbeverageplease thanks 🙏🏻 You're absolutely right. I think I do put pressure on myself even to enjoy myself or make everything ok for my lad. I think it's peri. Feeling really like I'm exhausted with parenting and wish someone would look after me for a change. (Not going to happen). Anyway it's a beautiful cottage. Hellish journey.. but I got here and th sun is shining. I will try and be grateful! Having wine and try to unwind.

I love a good binge watch @BerfyTigot. I've done a lot of that this week!

Hope you bounce back a bit quickly @Hotbeverageplease but v glad you saw your boy.

@Tarkan that's ok my list too. 24 hour ECG. Fun fun.

Love to everyone here