What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

I guess we can never predict PEM either which doesn’t help matters

@FurForksSake very sorry to hear about your MIL

@BerfyTigot sorry you're feeling down. I totally relate to what @TeaAndStrumpets says and often say I feel like I'm looking through a window at other people living and I can't join in.

As you all know, I've been a bit weepy at times when I get really fatigued. It does pass. Try and remember it. Just give your body what it needs.

It's partly why I started this thread. I enjoy the 'what are you up to today?' general thread but felt just like that, reading it.

Today is slightly cloudy but hazy sun. I'm sat back on the giant beanbag on the deck. I can hear skylarks and other birds and bees buzzing. That's it for the afternoon (bed later for some telly) unless I venture to the shop for damn packed lunch supplies. DS may have to survive on crisps, fruit and biscuits tomorrow. I give up. He doesn't eat sandwiches anymore anyway!

@JewelleryCat it is a slippery one PEM for sure. Sometimes I do something and wait for the shoe to drop and it doesn't. Other times is IS predictable. I do think stress is the biggest factor. That's why work is bad just now for me.

Yes @FurForksSake .. sending loads of love to you and your family. So hard.

@MewithME I guess I haven’t found that it is predictable for me even with living with CFS since my teens. I’m still learning, I guess we always do keep learning

Yes @JewelleryCat and then we get cocky and think we 'get it' and the MEcfs comes along with an "oh no you don't"! 😜

That’s exactly right lol or you think you’ve found something to help and it does help for a bit and then it stops and you’re right back to square one

Oh this is true!

Thinking of you @FurForksSake, such a sad time.

@JewelleryCat I've been trying to work out a pattern with the PEM and I'm starting to think that it takes a different amount of time for mental and physical exertion to hit me, but I'm not totally sure. And sometimes they're combined so it's hard to tell.

I've got some washing done and hung out, and am now back in bed trying to figure out what it would be useful for me to order in bulk to reduce my number of orders/ deliveries/ trips to the shops (not that I've been to am actual shop in weeks) and amount of time spent thinking about needing to buy things.

First time posting in here iron levels were showing low last week but not as low as last year. Feeling dreadful so was hoping for a transfusion again before I’m extremely low. Thankfully my bupa will cover me instead of waiting 3-6 months for different tablets to make a difference. Toddler is with mil today so we are off for a date day but I’m exhausted and In pain will crack on a smile and make the most of the lovely weather and nice lunch with my husband.

Afternoon all.
@FurForksSake so sorry to hear/read your sad situation. Hard for all of you. Hope you have a family that pulls together.

Dd1, her dp & dc will be round for dinner later. It's a lovely sunny day again. Dh had 2 call outs for this morning (boiler engineer) so ds has been left to sort out the roast. I can peel potatoes but can't lift & drain the saucepan or put the roasting pan into the oven so feel a bit useless. He should be back in the next hour hopefully so he gets a breather before chaos descends. Dgc is nearly 3 & an absolute ball of energy.

I've been racking my brains thinking of bulk buy stuff to recommend! I have a very reduced diet but I buy extra virgin olive oil in 5 litre cans and decant...much better value than supermarkets. Also I watch out for offers on Pukka tea. I live on their Three Mint and the price varies so much. Obviously pasta - I get freee brown rice which doesn't go mushy. DH will eat anything but hates spicy things. He is happy with Charlie Bighams. If we have a roast we slice the leftovers and freeze.

Hope you have a lovely family lunch!

@TeaAndStrumpets I love Pukka tea. I had a selection box for Christmas and really enjoyed it.

Bulk buy stuff... I've gone for the whole gives a crap for convenience and lack of bathroom fluff which saves a bit of cleaning! I get smol dishwasher tablets. Other than that, I haven't got anything regular I don't think. I should think a bit more about it too.

Just realised I am being dim.....bulk buy doesn't mean subscription 🙈

I don't suppose I feel the need to stock up especially as I usually get it delivered anyway.

Olive oil is an excellent idea, I'll add that to the list. So far I've ordered cat food and litter, toilet roll, toothpaste, electrolyte powder. Definitely don't need any other toiletries as my Christmas stash should last the year! Oats and oat milk (wondering about trying one of the powdered ones) would be useful - sometimes I wouldn't be surprised if I turned into an oat.

I'm lucky to have a decent amount of storage space for this at least!

@martha79 Are yoi a Costco member, or know anyone who is who could take you? Great for bulk buying store cupboard stuff.

Thanks @TeaAndStrumpets 😊

Thank you. I am trying to do some reading on all this now. Having a lie down currently after cinema.

@JewelleryCat I Wake up sort of sore but have more energy in the morning than any other point in day. I’m able to get some light and minimal house work done usually and go to the shops. I then reach a point where I need to lie down and have a few hours rest in the afternoon so that I can do dinner for my child etc.

I also work part time-3 days- and finish at lunch time 2 days per week- go home and lie down for few hours.

@TheChicSnail have a proper lie down. Reading can wait 😉

@TheChicSnail you're lucky, I haven’t even managed to get any housework done yet but I’m hoping to get a bit of energy for that because it does need doing

@FurForksSake im sorry to hear about the deterioration. I hope your children aren't too upset about it and you are all keeping yourselves as busy as can be.

Ten year old is out playing in the streets somewhere, he has been terribly upset. We went to Tesco earlier and bought really nice tissues, chocolate and looked at all the Easter eggs.

The almost teen has done a few chores and is gaming.

DH came home, emptied the litter tray, had a sandwich, went and picked up laundry for mil’s partner and has now gone back.

im slowly cooking a roast, I’ve filled my new bird feeders and I’ve started a new Netflix show (Vladimir?)

It's a strange time isn't it? Like reality has split in two, waiting for things to happen but dreading it all - meanwhile normal life just carries on regardless.

Love to all the family.

I agree with teaandstrumpets that normal life goes on but you've also got the inevitable happening soon. Sending love.

Might be worth speaking with school if he continues to struggle especially afterwards. They have been amazing with me over my terminal diagnosis. There are all sorts they can offer for grief if need be.

I went to a friends for lunch then her DH and mine went off to buy some car stuff. Just had a nap while a horror film played in the background, I’m funny like that as DH says. We are going out for tapas this evening for DS birthday with his GF as well. Will be on us so I expect a big bill. That’s why I had the nap, it’s just about pacing for me these days. Doing much better after my reaction to the meds and awful virus. We had the longest walk I have had since mid January so was very tired last night but it was lovely.

@MewithME I'm doing a bit of both - buying more than usual and getting things on subscription so I hopefully don't need to think about very often at all.

@CoffeeBeansGalore sadly no Costco member friends currently!

Feeling extreme fatigue today. Woke up feeling achy and tired but got a call to say DM had fallen down the stairs and likely broken her foot so met them at the hospital to help dm out of the car etc. came home and dh has been less that sympathetic over my fatigue and told kids we would go to a park. And with that the cars started making an odd noise.
So used all my remaining spoons at the park with the kids and now absolutely done for, can barely move. Dh huffing about the house doesn't help things. And tomorrow I won't get the bed day I need as I'll have to get the car sorted. Feels like it's never ending at the moment.
Thanks for all the welcomes though, that's lovely to read.
I'll be in bed soon after the kids tonight I think!