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! 😉

@Tiredandwired2 hadnt thought of voice notes that's a good shout thank you. Will get DH to set up the function on my phone as I think I turned it off.

@JewelleryCat I try not to put too much on him as I've already passed on extra stuff for him to juggle. I am also conscious that he is struggling at work so I'm trying not to add to his load much more.

@Oioiqueen I think a one off treat might be in order today. Whatever it takes to make both your days easier. You’ve got this.

I just want to know what wonderful perks you have got with your promotion!

@Dozymoo42 thanks for asking. The poor kid messed up a paper because he didn't understand that he had to answer both sections so only answered on one of his set texts. Nobody knew until the next day when his home tutor asked how he'd got on. He was so distraught! The school is contacting the exam board but don't know if any allowances can be made. Anyway the invigilators will be going through the questions with him from now on! Maths went OK (we think 😉!)

Awww poor lad ! I hope they can do something for him. Amazing that he feels the maths went well!

Well quite! We'll find out I suppose.

Oh what a shame 😕 I hope it doesn’t knock his confidence too much. Great news maths went well 👍

@TodayIsatrickyone I ended up picking the 5 year old up from school as he was apparently out of sorts. After we collected the eldest we went to the local shop, he got his sweets I'd promised this morning before getting the date wrong and I got an ice cream. Calm feels a little more restored now. Thank you for the support today, it's helped more than you'll know.

In further better news I finally got through to DWP and started my PIP claim. Guess what fun I'm doing tonight 😂. I'd written to them about three / four weeks ago and hadn't heard anything so decided to try again by phone today, obviously hadn't even processed the letter.

So much mental energy needed when you have very little to spare. Hope it's a straightforward process. 💕

Ahh il so glad to read DS coped okay and things are a little calmer. Great news.
I do hope the dreaded PIP form doesn’t upset the restored calm. It can be a little soul destroying but slowly, slowly and you’ll get there. If there’s a charity who can help at all, it makes the process so much easier as they tend to know how to phrase things.

Thank you! It's really not the end of the world. He's got a college place already on the strength of his photography portfolio, and can take any resits alongside. He has a lot of potential, just needs to find his niche. It's a shame he's missed out on school friendships and extra curriculars (he is extremely musical) but his mental health wasn't good at school.

My advice is to answer the questions as though it is how you are on your worst days

Very good advice. I don't know about claims etc but I have always downplayed answers to CFS/ME questions almost out of sheer embarrassment (crackers I know) . In your situation you need to lay it on the line.

I use an old fashioned Filofax to help with reminders etc. It does help.

benefits and work is a good website for help with PIP claims.

@MewithME hope you are OK.

Thinking of you too @MewithME

Hope everyone is having an okay Friday.

I did an online consult with the GP today for ongoing pain that really isn’t settling. The appointment came back promptly but for Next Thursday so nearly a week to wait which after 4 weeks of intense pain feels a long time!
By phone too despite asking for someone to examine the shoulder/ arm I’m struggling with. Feel like if it weren’t for this pain I’d be doing much better. Have got physio Monday so will plough on and get them to take another look. Surely if it’s just tension/ muscle pain from being bed bound it should be easing as I’m getting up and moving a little more?

Plodding sort of day. Will probably watch Rivals at some point

@TodayIsatrickyone I am always surprised when GPs give telephone appointments for things that need to be physically examined. It just adds in a delay which is not comfortable for you. Hope it gets sorted out soon. The physio sounds like a good bet.

Ive just phoned back and was told that the GP had very kindly agreed to fit me in via telephone next Thursday or it would have been several weeks!
That made me cross so I asked her to confirm that she was now telling me the same surgery who wouldn't see me the day I had a stroke were prepared to leave me in severe pain for weeks?
She looked up my notes and I now have a face to face at a different surgery over the weekend.
I know getting there will take it’s toll but I just want someone else to examine my shoulder given it’s 4 weeks of intense pain already! I can’t stay on morphine forever. Hate that you have to get stroppy to get anywhere as it’s really not in my nature but I couldn’t rest for thinking of how they let me down so much already recently and picked up the phone.

Oh good for you! Will keep everything crossed for you.

Thanks @TeaAndStrumpets Hope your recovery is going well.

Thanks getting there I think. The eye that needed an air bubble is quite blurry on and off but it's a great result.

Well done for pushing to be seen @TodayIsatrickyone

Finding it really nice having my dad staying but also really hard energy-wise. I'm just not used to having someone else around all the time and making conversation so much. Plus I slept in the spare room and was really restless. He is very good at accepting me going "need to go away and nap now" though. Had a local walk and went for a cafe lunch, but I got quite wobbly between the walking and then the food taking ages. Just emerging from a nap on the sofa now and going to cook (i.e. stick in the oven) some salmon and veg for tea.