What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

My current PIP award is until August 2026, when should I expect review paperwork roughly? When I first claimed, they were sending review paperwork a year before award end but it’s already past that now.
I want to be prepared to fill in the forms but don’t want to do it too early and have a load of out of date evidence.

@BerfyTigot I adore hydro, I’m just back from my session. I feel like I’ve done some exercise without being flattened or in agony. My surgeon tells me that gentle strength and mobility through hydro will make a big difference to me. My land based physio says he can see im a little more coordinated. My hydro physio is very good, she knows I’ve got hyper mobility and suspected Ehlers danlos and will make sure I don’t work beyond my ranges.

I had a PIP review, finally, in the Spring and they were well behind then, it took around a year from sending in the review forms...

Yes it used to be a year before they sent the forms but seems to vary now I think.

Yes I wasn't sure whether to day anything but I guessed they might wonder as been in bed such a lot, also I think they think I have depression (I do as well but don't want them thinking about that and worrying etc) anyway I guess I thought knowing more might be helpful. They are a bit older now as well.

My mum had mental health issues and we never talked growing up and I think that just made me anxious. I will not lean on them for support like she did, but some help around the house would be useful.

@FurForksSake thanks for the info, there's a hydro pool about 35-40 mins from us so sounds like it's worth a try.

Still having a sofa day so trying to do a few useful things online. Bought some bath stuff for Christmas.

I have ordered my Christmas cards. I hasten to add that I won't be writing them for weeks! We do send a lot so I have got the effort down to a fine art.

I buy all the same size and have the Christmas list saved in the computer which prints onto Avery labels. So can have the addresses peeled and stuck in no time. I then choose a suitable card for each recipient and put it with the right envelope. Being all the same size makes it very smooth.

I am then feeling shattered so put them all to one side for a week or so......

Gosh what a boring post! Sorry.

But clicking to buy some cards is all I have done today!

I use an app called finch and have my daily goals on there so it always feels like I’ve done something.

mine are
get out of bed (I aim for before 9)
brush teeth
wash face
moisturise
drink water
brain games
read five pages of a book
do something creative
set outside once
survive the day

i can always at least tick off survive the day! You can add any goals you want to. It’s quite twee but I do find it helps me mentally to see I have done things and to schedule bits and pieces.

And not boring!!

It feels quite good though to manage an achievement from the sofa! I quite like hearing how people plan and organise things like Xmas. I also usually start doing online bits around now.

Thinking I’ve got something else going on just now as I’m still totally floored and been quite achy, shivery too. The rest of the family had colds last week so makes sense Im perhaps fighting something. More rest and paracetamol today and hope things turn around before I’m on my own for the weekend and no one to help with prepping food!

I have had a soak in an Epsom salt bath this morning as it’s less energy than the shower and lying on the sofa now. New Velcro dog is sleeping on my knee with the most adorable little snores! That’s my little spark of joy for today 😊

I love that @FurForksSake 😊

@FurForksSake I love that! I will note that I brushed hair AND teeth without resting in between to my list for today.

Surviving the day is a good one!

@Hotbeverageplease you do sound poorly, hope the dog therapy works for you!

Thanks, in some ways if I’m fighting an infection it’s rubbish but easier to deal with mentally if that makes sense, because it actually will pass sooner or later!
Im now also chuffed that I can tick a few things off forks list! 😊 Love a list I can actually tick things off!

I put my bathroom plants into pots! And watered the poor things. I’ve been meaning to do this for ages. One pot is a bit short but I need to throw some bigger pots.

Brilliant! Love your pots. Such a nice blue.

@FurForksSake you're a ceramicist? Awesome. They're fab.👌🏻

Haven't caught up properly... Been an insane week work wise...and it's only Wednesday!

Hoping I might see some light at the end of the tunnel soon.

I'm v slow and tired but plodding along

@MewithME yes, I want to eventually give up the day job that I’m on long term sick from and make my living from it. But I need to sort the garage out and get a kiln which I’m waiting for DH to sort out.

Love the pots @FurForksSake and great to have a long term goal in mind.

keep plodding @MewithME all we can do.

i’ve just managed to sit in the garden for 10 mins, dippy rescue dog just met a lovely friendly postman who got down on her level and didn’t mind her barking at him. She’s great with us now, much more settled and there are lots of positives but she is very anxious and barky with any visitors still ( not that we have that many) which is understandable but it’s good when she has a positive experience to help her learn that new people aren’t scary. Hopefully she’ll get there 🤞

Home from work and resting in bed with a cuppa.

Horrible day - far too much thinking/problem solving for my pay grade and a ridiculous number of stairs.

Thank crunchy it's Wednesday 😴

Ohhh how exciting. One of my friends is a ceramicist but she gave her studio up. She is busy painting instead these days.

I always think I'd have loved ceramics if is had chance to do it. I am arty but my day job doesn't let me do much of it these days...not with the MEcfs too.

I doodle now and again and I enjoy taking photos for my Instagram. It's a cross between therapy and a visual diary. Always take a nice pic when I get out. Reminds me of the good days when I look through it.

Awww @Hotbeverageplease . I do miss doggos in my life. I just love them and they know it. Sending an ear tickle to your new pooch 🐶

I first started a good few years ago now, with a taster session of just a couple of hours.

i do dabble in painting, I’ll hand paint all my Christmas cards, I need to find a design for this year. I think I need to change up my usual wreath design.

I love this time of year, I might try and do a mini watercolour tomorrow.

I love the idea of the visual diary, taking photos is so lovely and inspiring!

Hi all, awake as usual. I don't have CF/ME but saw an article on it earlier that they have developed a blood test that can diagnose at a lab in Oxford! Thought of this thread when I read it.

Today was slightly better than the last few days have been which is good.

thats very interesting!

I’ve taken DS1 into school for his return following minor surgery. The medical person who apparently knows my son very, very well was outside and took him in to organise passes for him.

I’ve got to go out at some point to buy more calpol and calprofen for him as he’s 12 but not a good pill swallower! Very, very sore so I’ll have to build up to that.