What are you up to today if you have a chronic illness Thread 8.. plodding on gently...

[MewithME]

Linky to last thread 🧵 https://www.mumsnet.com/talk/_chat/5506529-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-7

Let's be good and use those last posts up first. Nice to be tidy here if not in my house! 😉

Sorry to hear that @TodayIsatrickyoneare you able to watch telly or listen to an audiobook?

Read my kindle in bed, slept a lot, missed my crochet class due to earache in both ears as well as all the chronic illnesses I have. Not eaten yet I can’t summon the energy so yes please to the cup of ☕️ soft hugs 🤗 for you all x may tomorrow be a better day x

@martha79 the syrup sponge pudding was amazing. Hoping to have the last serving of it tonight if the kids don't get to it before me!

Struggling to keep up with all the posts but @TodayIsatrickyone sorry to here you are having a tough time 💐

@ValleyClouds snap with 2 of the P's. Post office and pharmacy for me. How exciting 😀

Thank you, took meds early alongside heat, tens machine and rest. I may have overdone it downstairs earlier. Managed some meditation music and a little bit of my audio book and if I need extra meds in the night so be it. I decided myself I wanted to cut down and it may just be a bit early yet.
Hope everyone manages a reasonable nights sleep and thanks to everyone for the support.

Morning all.
@TodayIsatrickyone hope today is easier. Please take care.

Do any of you ever feel guilty about the burden you are (or feel like you) to your partner? Sometimes I feel like walking away from my marriage just so my DH can have a more care-free life, a life that he deserves.

I'm sorry you feel like this and I do get it. I am no longer in a relationship but felt the strain for the 2 years I was ill and he had to do more. I did feel guilty at the time but no longer do because illness comes to us all at some point in life. It's inevitable in some form and I would have supported him if the shoe was on the other foot. I'm sure you also would for your partner if things were the other way around 💐

Hi so sorry you are feeling low and this is a thought that has occasionally crossed my mind. I have said it to my husband and he is horrified and alarmed that I should think like that. He says he couldn't possibly manage without me. I suppose nobody knows what a marriage is like from the outside though. Is this coming from him? If he finds you a burden that would be a bad sign, but if you believe he finds you a burden that is a different matter. As @Tiredandwired2 points out, you would hopefully look after him if he needed you.

Well this is the first time Mumsnet has let me in all week! 🤔

Massage this morning then extra shift at work. Am really enjoying my (very) temporary promotion, but not sure I could sustain it for much longer. Thank goodness for half term 👍

Today I am going to pick up new glasses and have the Ocado shopping delivery coming. So quite a busy day here!

hope all have a good day

Morning all. Been awake since 5am and am trying to get the house ready for my dad visiting (there have been a lot of things shoved in cupboards). Forgot how much effort it takes to make the bed in one go - and put a duvet cover on as I use a coverless one but I've only got one of those. I've got a few meetings at work but am going to have to try to nap in-between 😑

Glad it’s going well @Swanhilde I was just thinking of you this morning and hoped you were ok along with @MewithME

Have a peaceful day all 😊

@TodayIsatrickyone thats wonderful progress. I imagine mentally it helps also, have my fingers crossed that all goes in the right direction for you. Sorry to see your latest update that you ended up back in bed. Must be incredibly frustrating.

@ScaredButUnavoidable yes most days I feel like this. He didn't sign up for me to get diagnosed with incurable cancer at 37. He reassures me that I still stayed with him 16 years ago when he told me about his organ transplant and the subsequent hospital admissions he's had. Yes but I always knew he'd get better and come out at some point. I just feel like I can't offer him much at the moment. I feel like everything is geared around how much fatigue I have or my treatment etc. We are hopefully all away next weekend and our wedding anniversary is in July so a few things coming up where we can try and act 'normal'. I do dream about just jumping in the car, driving to a remote part of the UK and living off grid on my own. Quite the pipe dream though.

I'm hating myself this morning. I get brain fog and dates are my nemesis. This is the second time I've promised my 5 year old something for after school and have got the wrong week. I just feel absolutely useless like I can't get this simple thing right. He's only 5 so won't understand what brain fog is and will just think I've lied to him again. I know that he will absolutely kick off at pick up time and I'm fed up of being the one to cause it. I guess I just feel a bit of a crap parent at the moment.

I feel like an idiot where normal people can just function but I feel like people are looking at me and feeling like I'm losing it. I'm sure they aren't but then I don't do pity from others either.

@Oioiqueen would a calendar help for dates? Either a paper calendar or an electronic calendar? You’re not a bad parent or an idiot, brain fog is like that, it’s awful

@Oioiqueen I can relate to the brain fog and guilt. I walked past a coffee shop with my DD the other day and I said 'We will go in there one day' and she said 'you know you have been saying that for months'. I felt awful but it's so hard. It's a bit easier for me though because she is older. 5 is hard.

I absolutely get the feeling you can't function though. I often feel I am missing some software that other people have in abundance.

Sounds like a frustrating day @Oioiqueen but you’re absolutely not a crap parent. I can hear your strength and resilience through your posts in one of the toughest situations anyone will face.

I agree Five is a hard age to understand it’s not your fault isn’t it.
Is there anything you could do at pick up to distract him? I think I would go down the route of apology with simple explanation- mummy’s brain is tired and keeps muddling things up. Acknowledge he’s disappointed and that’s okay. But then maybe offer a distraction of doing something else or good old fashioned bribery of toy/ sweets/ cake just to get through today! Probably not the best parenting advice but my son was 5 whrn I first became ill and I remember how tough it was.

And thank you for your kind words too

@Tiredandwired2 i just wanted to give the kids a normal childhood and I feel like I've failed on that one. Where they are so young they'll be the kids whose mum died whilst going through seconday school. Massive guilt but I'm trying to better myself by going through therapy for that and holding those feelings.

@JewelleryCat I have a digital calendar that I share with DH on our phones. I also write lists on a list app however I think my issue is not always putting the dates in as soon as I see them. I hold them in my head and then get muddled to what is being done when. It's like there isn't a connection between something I read and executing it at the right time.

@TodayIsatrickyone I should know better as it was a PTA event that I'd offered to help with.... I promised him that we would do it after school if he walked in nicely (he's had quite a bit of refusing to go in) so I know he will kick off the minute he comes out and realises it isn't happening. As far as his little brain will see is that he's kept to his side of the bargain and I haven't. I think I might be able to placate it by offering him a chance to pick something from the shop as a one off on the way home. Fingers crossed.

@Oioiqueen instead of you putting the dates in and getting muddled, would it help if your DH did it? Take a bit of pressure off you?

I dreamed about a walk DH and I used to do, probably about 10 years ago. We'd get up extra early, make bacon rolls and a flask of tea. Then gather up dogs and blankets, and head off to the river for a breakfast picnic. It was about 3 miles, over fields, stiles, jumping drainage ditches. We used to go a few times every summer.

Made me so sad. Having trouble getting out of the hole now. To the point where being mindful and concentrating on what I can do, can just piss off.

So I'm going to have a latte, and a piece of carrot cake. Contrary to popular belief, I think eating your feelings has a lot to recommend it.

Sorry to moan.

Morning all,

Quiet day today, might paint

@ScaredButUnavoidable I’m sorry things are hard

Hey all , hope everyone is getting on ok. Just trying to catch up with the thread but missed quite a lot !

Am stuck in a bit of a rut so totally get where you are coming from @danglethedingle not posting as much cos I am literally doing nothing 😢

@Oioiqueenyou are not a crappy parent you are a warrior- honestly my kids are adults and I cannot imagine going through this when they were little.

@TodayIsatrickyone hope you are ok and looking after yourself 💐

@TeaAndStrumpets 🤞everything crossed for your grandson exams are horrible!

@Oioiqueen I understand about brain fog, I’m a big reader and I once went 2 years without reading a single book. I just didn’t have the cognitive ability. It’s the worst.

@Oioiqueen I'm in awe of everything you have to juggle and think about. I can't even imagine how it must feel. You sound so strong, even though I know you sometimes probably don't feel it.

With the brain fog have you considered using voice memos on your phoneto brain dump and then putting these into your calendar or reminders at the end of the day? It's the only way I have kept my head above water with my brain fog and it's freeing for working memory which makes every day functioning easier.

@danglethedingle That sounds so tough. Sometimes eating feelings does really help 🍰

@danglethedingle go for the cake today! Sometimes I think it’s therapeutic to just have have a sod it day, cry and eat the cake and feel sad for the life lost. It’s being human. Somehow we dust ourselves off again and find a way through.