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! 😉

I hear you. It's so hard being forgotten and having to find your own way through the medical maze.

I do also think we are amazing for keeping going though and for the things we do get done even though it's so so hard

@MewithME I also hold emotions in and then get to the point where they actually have to be forced out. I've just started counselling at the moment and she recommends using a diary to journal in. I've had to pass word protect it on the phone as nobody needs to hold those emotions. I've done it once so far after holding the emotions in all evening and it did help for me to get to sleep. Might be worth exploring maybe?

@TodayIsatrickyone and anyone else struggling with housework, try The Organised Mum method. It's revolutionised our household cleaning by allocating days to rooms, basic every day jobs and once in a while deep cleans. DH is one that has to be told what to do (no issues with actually doing it). Laminated a variation that works for us and is on the fridge. We both just refer to it each day. For example today is bedrooms. I stripped DDs bed before the school run and put the washing on. Whilst I was out DH cleared the floors and I can hear Eufy doing the carpets as I type. The idea is to spend no more than 15 minutes on the daily jobs (bleach toilets / load dishwasher /load of washing on), and no more than 30 minutes on the designated room.

@MyAutumnCrow it drives me potty. My oncologist has my thyroid TSH checked every two weeks due to the treatment I have. The GP is now responsible for monitoring my levels and adjusting my medication. They want my oncologist team to cancel the repeated test and to go to the surgery once every 8 weeks for bloods. Absolutely not am I having bloods in two different places when I have weekly blood tests at the hospital. You all share the same reporting system, you just need to set a reminder to check it. Don't shift the onus on me when you have the information, I can't see the blood results.

@Oioiqueen Yes that’s pretty much what we do too normally only I have an app with weekly jobs on that we refer to. Laminate board is a good idea once I’m able to sort it. I agree it works well.

Unfortunately when I had the stroke 3 weeks ago my baseline has changed to being mostly bed bound and needing DH to help with my own personal care, sorting meds, keeping me supplied in food and drinks let alone house jobs. He’s doing brilliantly ( is medically retired due to brain injury some time ago ) but obviously it’s more difficult for him than if he was fit and well.
I will and I am slowly regaining some strength and independence so it’s just finding a way to muddle through this bit. Sometimes I’m guilty of typing out my worries on here! Reading it back yesterday I came to the conclusion it needs to take a back seat for now and I just focus o my recovery.

Im glad you’re finding the diary helpful. I’m actually doing a similar thing. I really find writing feelings out helps.

Hope everyone can have a peaceful day.

A little positive is I’m sitting in my front garden and admiring a rhododendron that DH was given for free. It’s in a pot while we decide where it can live! The bees need love it.

Hello all 👋

Nice and cool here today, I don’t like the heat. At all. So it works for me. Even rainy today, took a brolly on my walk earlier and had to use it repeatedly, lots of showers.
Glad to hear your eye is on the mend @TeaAndStrumpets maybe a bit less red and sore? It seems most of us will need this op at some point and you’ve explained it really well. I’m less worried myself and I’m pretty much a medical phobic, so that’s good.
Am still struggling a lot but coming to the end of my novel (the one I’m writing!) so that’s demanding my attention. I’ve loved writing it. My goal is to write a book a year from now onwards, it’s my happy place!
Have been battling with the dreaded morning adrenaline and anxiety since my diagnosis 18 months ago which really colours your day, and finding a refuge (on the page or otherwise) has been huge.
Have just put an apple cake in the oven and done the washing up of the ages. I have some seedlings that need planting out but am in new jeans (to cheer me up) and don’t think I have the energy to change into gardening leggings. I get very messy.
Nice to hear about your spring gardens. I keep stopping to sniff lilacs when I’m out, I need to buy myself one. Love all the purples @TodayIsatrickyone.

Beautiful rhododendron @TodayIsatrickyone! Mine is also in a pot because my soil isn't acidic enough. It seems really happy now though. It's not blooming yet but I keep it under the trees in the shade.

@MyAutumnCrowi agree with you. I sometimes feel I'm wasting my life away not able to do anything. But I'm really trying to just accept it as I want to make the best of my life. It’s just so so hard. I wish they would hurry up and find an effective treatment.

@ValleyCloudsand @CoffeeBeansGalorefurious on your behalf at the utter rudeness and contempt with which people treat those of us in wheelchairs. Clip their ankles!

I've spent today organising my photos. I've moved them from google photos to my own external hard drive. I hate the idea that my photos are just floating about somewhere for anyone to hack into. Not sure why they'd want to though!!

Lovely and sunny here but a bit too breezy to sit outside. I'm getting my knitting out (as usual) in a minute. Dh has gone off to play sport after work. I am so envious of his energy!!

Oh also got my fringe cut so I can actually see now. Felt like a big trip out (5 mins drive away!!)

Lousy day. Came on my period unexpectedly. Convinced I also have a UTI and the Passport Office is absolutely fucking useless! Sorry to dump on you all.

watching Legends now!

@TodayIsatrickyone very pretty!

@bedfrog thank you. Luckily it rarely happens now. I'm a bit more bolshy 🤣.

@TodayIsatrickyone love those flowers. So pretty.

@bedfrog well done on the photos sorting. I need to do the same. It's on my list.

Slow day here. Tuna mayo for dinner and managed to make a syrup sponge cake because I had a raging sweet craving 🍰

Ooh I fancy a sponge pudding now @Tiredandwired2

Evening all. Funny mixture of a day here - woke up feeling pretty rough but had lots to do at work and ended up really enjoying it. Had a couple of those sort of meetings where you're just bouncing ideas about and getting to know people we might do some work with, talked about all sorts. Very tired this evening though - made food, collapsed in a heap for a bit and then made myself do some yoga as I'm so stiff.

Yesterday's workshop was interesting - lots of breathwork stuff which I've done before but there was one stretch to release neck muscles which was very effective (whilst making me feel a bit sick).

Good for you!!
I dont use one all the time, just for lots of slow walking and standing about. Dh is tall and pushes me with confidence so we manage ok. I used a power chair in an airport once and it was dreadful, I could barely get anywhere and was just staring at bums the whole time.

@ValleyClouds
Sorry you are feeling so rotten, hope you are on the mend very soon. Dump away! We are here to listen and sympathise

@martha79
Love the sound of the neck stretches (but not the feeling sick part) i had a physio stretch my neck out once and it fels absolutely marvellous. Unfortunately the next time I went and he did it, it triggered my nerve pain and was awful. Still searching for the high of the first time

Hada deconstructed fish pie for dinner and chatted on the phone with my mum this eve. She lives far away and I miss her but find it so hard to visit. If it was up to me I'd have her down the street and visit all the time.

Hoovered up a massive spider and put the hoover outside and it got rained on. Really hoping I didnt break it (and that the spider stayed outside)

@martha79 i am desperate to get back to my osteopath who is a wizard with my permanently stiff neck. I haven't had the seasick feeling now my eyes are equal prescription but having to lie rigidly still for 20 minutes has really messed up my neck. The slightest pull makes me swimmy, and I get horrid crunchy noises when I turn my head. The trouble is I seem to get pulled anything when my back is tight, ribs (costochondritis at the drop of a hat) hip joints etc. I've had extra stress the last six months and my jaw gets tight too. Phantom tooth pain, sometimes I wake myself up biting my tongue so TMJ presumably. I can't even blame being old because I've been like this forever.

Good for you writing a book @Bluebellsandwishingwells I hope it goes really well. It's such a cliche that most people have a book in them...I know I haven't! I am an avid reader so really appreciate those who produce them.

@bedfrog I wish I could knit. When I was at primary school I attempted it but the end result after a whole school year was one and a half white mittens gone grey in my desk!

@ValleyClouds hope your week improves💕

Day of 3 P’s

Physio, Post Office, Pharmacy

Not doing much here. Been waiting for a GP call all morning, which makes me feel like I can't e.g. get a shower or bath in case they ring. Now they have not rang anyway!

Oh well it wasn't that important anyway. It's raining and windy outside anyway.

Hoping for a good day for all

We've got heavy rain and hail here!

Waiting for OT visit here and thinking of my DD doing her first A level exam today!

Tried a tens machine for shoulder pain, jury still out but think its a tad easier when using it.

Weather has been changing its mind all day between rain and sun.

It's been all sorts of weather here including some very heavy rain. I've only been out as far as the bins!

@TeaAndStrumpets I would love to get back to the osteopath too, although I don't think I'd be up to some of his 'stronger' moves at the moment. I've also been crunchy forever (hypermobile joy) but I felt a lot better when I went to the osteo regularly. And could exercise.

Had another rough night - was a bit of drama in the street just as I was going to bed (taxi crashed into a parked car, nobody hurt but lots of arguing) and then I couldn't settle and was so restless. Today has been quite a cheerful productive one at work again though, so that's made me feel better.

Signed up to a couple of online events this evening, a film Q&A one and a talk about seaside buildings, which should be interesting.

@TodayIsatrickyone apologies I didn't realise you were bed bound from the stroke. It sounds like DH is doing a grand job despite his limitations. You are right that it definitely needs to take a back step to the more important matters.

Gosh I'd hate to go back to exam days! It's so difficult to relax thinking of them in the exam hall. Hope all goes well.

DGS has been out of education for most of his secondary years (ASD) but he is sitting some gcses at home so we are all on tenterhooks for him. It will give him a boost to get even a couple.

It’s been sunshine, rain and hail here

Yes it's been quite dramatic!

@Oioiqueen oh no worries I wouldn’t expect you to realise. I am making it downstairs for short spells now which my OT pointed out was huge progress on last week so hopefully things will continue to improve and I’ll gradually be able to join in a bit more.

@TeaAndStrumpets good luck to your DGS and his GCSEs. That’s great that he’s sitting a few at home.
I think DD just wants it all over with at this stage. We all do I think! She’s going to most likely take a gap year as she’s had a change of heart re her uni course so I think it’s sensible to take her time and see what options are open to her.

@TodayIsatrickyone I think she'll have a better chance grades in hand. DD2 also changed her mind about subject so declined her offer and applied for somewhere else for the following year. Her DH would have been in her year at the first university so they missed each other. They met doing postgrad at yet another university so got together eventually!

Yes we've high hopes for DGS who is a bright lad. Hoping he will do well at college. Just needs more confidence.

I don’t mind though, I prefer the cooler weather anyway so this is nice for me lol

Oh pain is rubbish tonight. After telling OT I was doing well, back in bed feeling exhausted and really fed up. Difficult at this stage to know what’s ME and what’s stroke related. I suspect a combo of both.