What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

(Ignore if you are young) I always think of Julian and Sandy re parquet and I love it.

I think choosing flooring is a nightmare so you are very lucky to have some you like already!

Parquet flooring, is that the one that looks a bit like a zigzag? If so, it looks nice

Quiet, cooler day here, the rest of the house are suffering with bbq hangovers 😂

Popped out first thing to run some errands and have spent the rest of the day in bed ☕

Bbq leftovers for tea later 😋

Parquet can come in different patterns. The zig zag is herringbone. In one house we put parquet flooring in throughout the downstairs in the block pattern. It was lovely & very practical with 2 dogs.

Bloods went well. Nurse was quick & efficient, tiny bruise.

We stopped off at Morrisons on the way home & Dh went in & picked up some nice salad bits for tea plus a gorgeous choux bun each which we had with a coffee.

He took the day off & pottered around doing bits & pieces ready for work tomorrow. It was just nice having him home.

A win 😊

Ooh choux buns!

Saw house, liked house, said I was interested, have to wait and see who the landlord prefers out of about ten viewers. Not getting my hopes up. On the plus side once I'd got over the journey there and the viewing I felt a bit energetic and even considered getting the bus home (I went for a taxi in the end to save time, plus I'd forgotten my headphones, but it was nice that it didn't feel totally impossible).

Sounds like a nice afternoon in the end. Glad the nurse was a dab hand...they do vary!

Hope you get it!

It was a no - at least they let me know quickly. I do suspect that landlords generally prefer couples if that's an option, so they have the security of two incomes.

Oh I'm sorry @martha79

Hi everyone, hope we are all well?
I've had an interesting week, I've suddenly started feeling a little better so the prospect of going back to work soon feels a bit more real. Huge relief. Not sure if I'll have to drop my hours or not yet though - but I hope I will cope.

Had some family visiting recently which was lovely.

We had a few really hot days here last week, went river swimming which felt amazing. Couldn't do much but I hope to get out again and do a bit more. It would be fab if I could do a little bit of exercise outside of gentle walks.

Anyone else have this weird thing where overcast days make your eyes hurt if you're indoors? Outside I'm fine (and prefer it to sun) but when I'm indoors the light seem to come in weirdly and make my eyes ache. I end up with the blinds down and a light on which is mad in Scotland this time of year as we have about 4h of twilight and that's it for darkness!!!

Oh absolutely it varies. I'm a pro at having one every week for three weeks out of every month. If you get a proper phlebotomist they a) don't freak out about my veins and b) I don't even feel it. I'm told to go and get mine done at the GP surgery. No thanks if a phlebotomist can't get it in my elbow then they'll have a good dig elsewhere for one. At least in the hospital I'm in the right place for it.

That's a shame

It's a specific bloods clinic at a small "cottage hospital" in our nearest town so they are pretty good. They have convalescent patients & different clinics on different days. Plenty of parking. Quite relaxed, only about 10 miles away so not particularly stressful.

@bedfrog I'm generally getting less tolerant of bright light indoors. I'm so grateful I got my blinds done downstairs last year. They're electric roller blinds and I can adjust them from the sofa. Made a huge difference in the heatwave.

I filled out my blue badge renewal this morning. Took two hours 😭 Thought it might be simpler for a renewal but no. The whole shebang all over again. Do I really have to do this every 3 years until I die? How stupid is the admin for disabilities? 😣

Right... trying to be positive. . Thinking of something good that happened today.... DS was adorable and made me laugh. That's pretty good enough I suppose. His flipping feet have grown again. He's finally growing!

Yes it’s the herringbone pattern that we have the quote was quite reasonable so hoping it’s all systems go! Just got a few other things to be done then we can book in for the guy to come 😊

bbq leftovers sound good @Swanhildewe had a breakfast tea (full English brekky for tea)

glad bloods went well@CoffeeBeansGalore

sorry about the house @martha79🤞something comes along for you!

Glad things are going in the right direction for you @bedfrogam returning to work soon myself it will be nice to get some normality back!

@MewithME DS’s are generally good for cheering us up and making us laugh mine does all the time, they also never stop growing 🤣

Morning all!

I woke up with a racing heart again so my PEM is ramping up. It is so boring conserving energy but I know I have to rest. This always happens when I overdo things, it's like driving a bit too fast and getting a speeding ticket the next week!

@Dozymoo42 I only had DDs but having 3 DGS has been such fun. DD1 finds them very entertaining, although they are not very houseproud to say the least.
Her 12 yo youngest is covered in mud before he even gets to school because he and his friend take a 'short cut' involving a hedge and a ditch.

Morning all
We had a few drops of rain first thing! Dippy dog stood at the door very confused as we haven’t seen wet stuff coming from the sky for a while!

Back in bed with a cuppa as I need to rest and conserve some energy for a hospital appointment this afternoon. It’s the cardiologist to get results of a scan I had following dizziness and feeling unwell back in Feb. I’ve a rough idea of results but I had an appointment in April to discuss and missed it as I was unwell, that was actually the day I had my stroke so a lot has happened since then!

The speeding ticket analogy is spot on
@TeaAndStrumpets I seem to acrue one every time I leave the house though!

@MewithME I hear you… It annoys me every time I have to do the blue badge renewal as it’s such a faff! There must be a way of making it easier for long term disabilities.

Good luck with the cardiologist! Hope it's not too tiring.

Thanks @TeaAndStrumpets I’ll be glad to get this one over with and hopefully can relax heart wise for another year or two. 🤞

Morning all

Good luck with the appointment @TodayIsatrickyone - "relaxing heart wise" sounds very deep and profound :)

Working here but should be a steady sort of day. Sent a load more house enquiries last night and potentially got another couple of viewings this week.

I've got a couple of weeks annual leave coming up later in July and am wondering whether to move at least one of the weeks - not really sure what I'm going to do with the time at the moment, and to be honest it'll probably mean more time not seeing/ speaking to anyone, which may not be helpful.

@CoffeeBeansGalore I love a good cottage hospital. Where we lived before had one, barely used. I had all my maternity appointments there except scans, they also did physio, blood tests and were adding a chemo unit in when we moved. They also had a huge car park and saved a 20 minute drive to the hospital. They are so underrated.

@MewithME it took me 5 hours to fill out my form for PIP. I'd done the research beforehand but it took forever as the damn website kept crashing too. I get why they take so long to prevent fraud etc. It just felt ridiculous having to write it all out. Especially when you can see from my medical paperwork I have terminal cancer which gives me side effects. I'm not claiming for the fun of it. I can see why people get rejected and have to appeal the whole process is ridiculous. Why two doctors can't just sign off and tick boxes for what issues your condition causes you I don't know. As per usual it's contracted out to private entities for ridiculous amounts of money, who don't adhere to waiting times and just do what they like without being pulled up on service levels. Sorry but of a rant there.

Not too bad weather wise here. Constantly checking outside that it hadn't started raining. I'm determined to get my washing dry before midday when I need to leave for chemo. We have a dehumidifier with a laundry setting so it'll dry in the utility but it's the extra faff.

I've had enough with work now I'm just debating whether it's now time to go on sick until I'm released by OH. Whilst we have some savings we can live off I'm twitchy about how long PIP will take. I am now 6 weeks in since applying so must be close to the actual assessment stage now. I honestly just don't know if I can cope with the summer holidays, treatment and not having the rest days that I currently get. On the other hand if I stop work that's it kind of thing I'll never work again. I'm 38 so expected to be working for another 30 years at least. I know a job isn't the be or end all but I feel like it's my identity in a way.

@Oioiqueen Totally hear you on the PIP too. I do hope there is some kind of fast track for terminal diagnosis as they’re incredibly slow to process applications. It can be a very tedious and stressful process which just isn’t right wirh everything you’ve got going on. The system makes me so angry!

I was a similar age to you when I had to accept I wasn’t going to return to work and I totally get what you’re saying about identity. I had a few counselling sessions as I was really struggling with the decision at such a young age and that was one of the things we worked on. Still being you despite everything.

It’s a hard decision and a tough one to accept so give yourself time to process things. As you say, treatment & summer holidays are hard enough so rest days are essential.

Another slow, restful day here ☀️

Went out for food yesterday evening to celebrate DD getting her degree confirmation. Not late but still late for me to be out out 🥳

In good news, I had a letter extending my PIP payments by 12 months til 2028 which takes some pressure off. Nothing in my condition has changed since it was awarded but I wasn't looking forward to proving that again, especially as you all know, the medical profession has abandoned us to deal with things by ourselves ...

Actually, that reminds me that I need to book my annual blood tests to show that there's nothing wrong with me 👍

Have a peaceful day all, the kettle's on 💕