What are you up to today if you have a chronic illness 🧵10! Summer Edition 🌞

[MewithME]

Getting ready..,. But you know the score.... Let's be good and fill thread 9 up first 😁

Link https://www.mumsnet.com/talk/_chat/5542135-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-9-summers-coming

I'm back!
At work today, there's an internal job vacancy that I'm really tempted by. It's the right number of hours, more pay, and plays to my strengths (working on my own, attention to detail, legislative knowledge), all in all it's perfect. But I'm worried my sickness record will count against me. I might apply anyway though. The extra cash would be nice.
Ooh I hate being disabled. I would be such a high achiever and surely in a really fab job by now if I could work full time. Its so frustrating.
@Oioiqueen and @ValleyClouds hope your appts go well! And hope everyone else is doing well.
I had a Neurology appt last week and need an mri, alas it was private so £900!!! I've been to my gp to beg him to make my case to nhs radiology for me which he's doing. Got everything crossed.

Welcome back @aliasfrog you should definitely give it a go!

I have been distracted by packing today, not the packing itself but DH getting in a state about it. He can't throw anything away, he is packing everything when I'm out of the room because he doesn't like me querying everything. It's going to be such a pain the other end!

I gave him a lecture about sorting things properly so he went through the kitchen cupboards and decided we don't need the cheese grater. Our ONLY cheesegrater. I challenged him on this and he said "Well you don't eat cheese so why keep it?" Unfortunately for him I retorted that I occasionally eat grated carrot 😐

This is not going well.

It rained!! Scarcely enough to wet the leaves, but rain nevertheless. More please!

Hope everyone is well. Great news on your test results @TodayIsabetterone :) and @Oioiqueen @ValleyClouds I hope your appointments go well.

I have been to the hospital today for a series of MRI scans - yearly check up after my treatment. I will find out the results in a couple of weeks. A lot of decisions around whether I continue to work, and if so, in what capacity, are resting on the results (not to mention other things like whether more surgery might be needed) so it's going to be an anxious wait.

Literally as I stood at the door of the scanning unit, my phone rang with someone from the Occupational Health team wanting to talk about my ME/CFS diagnosis, so I will have that to handle as well.

@aliasfrog I would say go for it! What's the worst that can happen? If you're disabled then employment law should in theory protect you from being disadvantaged as a candidate. It's horrible knowing that you could have done more if your body had been different - I can totally empathise with that one.

Wishing you well @VikingNorthUtsire that sounds like a lot to worry about, hope you get reassurance soon.

@aliasfrog gosh thats pricey. I think we forget with NHS care how much these sort of things cost. I know private providers bump up the cost to make a profit but it's still eyewatering. Go for the job, the worst thing they'll say is no.

@VikingNorthUtsire sounds really stressful. I hate waiting onbtest results, nothing can distract and time goes slower.

Appointment went well, amazed by how quick it is compared to IV. Got put in a side room where I was the only one is there. It was very weird not being in the chemo room next door.

So…..

it went well but I had to have a biopsy and now I’m waiting for the results

Thanks for the good wishes

I hope you don't have to wait too long.
🌺🌻 flowers in the meantime.

@TodayIsabetterone thank you for asking. I'm pacing myself as much as I can with the kids. I try and get as much done in the mornings as the fatigue sometimes hits in the afternoon without much warning. I've still got quite a bit of brain fog, I keep forgetting things mid sentence etc. However I'm signed off at the moment and not having the additional mental load does help quite a bit. I feel a bit of a fraud to be honest in trying to claim PIP and being off sick because I can function day to day. However my husband reminds me that it's because I'm not working that I can do the day to day stuff.

@ValleyClouds ive completely missed that you had an appointment today or why. Sorry to hear that you've had a biopsy, have you had to have one before. I've had a few now the waiting afterwards is the worst I find. I hope you've got some nice things to distract you until you get the results x

You had an appointment too @Oioiqueen I hope you are ok. I’ve had unexplained pain for over a year. They’ve now found something, which IS good news, less so that they don’t know what it is.

I could really use a bath but I’ve only got a wet room

I hope you don’t have too long a wait @ValleyClouds 💐

Sounds a stressful time and an anxious wait too @VikingNorthUtsire 💐

Glad you're pacing well @Oioiqueen and you're signed off work.
I think most of us feel some guilt applying for PIP especially when some days are better than others, but try and remember it’s about being able to do things repeatedly, reliably and safely. And your husband is spot on, you’re functioning better because you're signed off sick.

@ValleyClouds I have my fingers crossed that it's nothing much and they know what to do with it. The waiting for the results is hard though, hope it's not too long a wait.

@TodayIsabetterone I think I've made my mind up not to go back and see the sickline through to get medically let go to go into the support group of ESA. I've got my last counselling session tomorrow and will talk through it with her and see if I think of anything different than I've already thought of. I miss work but I think my husband is right that I owe it to him and the kids to be more present. Particularly so that with basic PIP and ESA support group that'll cover what my part time wage is anyway.

Keeping my fingers crossed for those of you waiting for test results.

@aliasfrog nice to see you - I would definitely apply for the job, see what happens.

I've had a very noisy morning - broadband installation was more involved than I expected, lots of drilling, hammering, man had to climb out of the window... but it's in now and working well. Been nearly a week without it and even with mobile data it's been quite frustrating. Looking forward to getting the robot hoover working again although its current 'map' of the new house is going to include a lot of boxes to manoeuvre round!

I had some rain last night! Still need a fan on in the house but the rain was a welcome sight

Morning all, definitely cooler today which is welcome. Osteopath for me this afternoon which will also be welcome. I sneezed yesterday and shoulder went into spasm! I’m stuffed if I get a cold!

yay for rain @JewelleryCat a few light spots here yesterday but didn’t really amount to much but still!

@Oioiqueen I’m glad you’ve been able to talk things through and make a decision re work.

Glad the broadband is sorted @martha79 and good luck to the robot hoover! I keep looking at them but Dippy dog is a bit like a toddler with the amount of dog toys she likes to leave all over the place. I think it would be too tricky just now. Maybe when she’s a bit older!

Hi @aliasfrog definitely worth a try re the job. Go for it!

Have a good day everyone 😊

Good luck with the osteopath @TodayIsabetterone

Morning all !

Yesterday was a wipe out, I just slept , so hoping to be a bit more with-it going forward. Nothing wrong with a good sleep from time to time 😴
Hope you all have a nice day.

Morning all. Sunny again but it's meant to be much cooler today. My blinds arrived yesterday (I've gone for temporary stick-on ones until I decide exactly what I want to do re curtains/ blinds) and they helped with not waking up quite so early. One of the cats did decide to spectacularly sick/ furball at about 6am though...

Got a day of a few meetings at work then it's the weekend. I've found a new little loop route to walk from home so will try to do that at lunchtime - it's only about five minutes but includes quite a steep hill (almost impossible to avoid round here) so feels like a workout but a manageable one.

And in making life easier news, I have ordered a tabletop dishwasher - read about loads of different ones and the reviews were mostly good so fingers crossed. My hypermobility particularly hates washing-up!

DH and I are going into town today for a potter. I hate shopping, so not that, but it's by the sea, so a bit of boat- watching. And maybe some chips!

Morning all
Hope the sleep was healing @TeaAndStrumpets and today is a better one.

Glad the blinds helped @martha79 and tabletop dishwasher sounds a fabulous idea!

Sounds good @FuzzyPuffling especially a fan of the chips by the sea part! Enjoy 😊

Im in still bed this morning as very sore after osteopath yesterday. She said all the muscles around my left shoulder blade are just rock solid again so lots of stretching and pulling required. She also got me to do the physio stretches in front of a mirror which was helpful. So painkillers and rest today and hopefully I should feel the benefit in a day or two which is generally the pattern. 🤞

@martha79 those blinds sound very handy. Glad you got your broadband sorted. We can get 1 Mbps via BT at our new house!! Fortunately there is a rural broadband initiative nearby so we'll be jumping ship to them.

@FuzzyPuffling oh I do like to be beside the seaside!

@TodayIsabetterone that sounds so similar to me, the muscles lower down affect my shoulder and neck. It has taken a few months but there is more movement so it's a very gradual progress. I don't think there are any quick fixes!

Feels chilly and it was spitting with rain when I took the rubbish out. Still hot indoors unfortunately until the house cools down and breeze doesn’t come in

Morning folks. Had a busy day yesterday and was struggling. Walking got so slow and painful. It was nice though despite soldiering on. I did have those frustration pangs though... remembering how I used to move and get around without ever having to think about it.

Anyway, seeing friends today at their house so just resting mainly apart from that. Sat here with my book, a coffee and a gentle breeze. Even wearing a hoodie!

Sorry I'm being self centered again and have struggled to keep up with the thread.

You on your hols too @FuzzyPuffling ? We had chips by the sea and some boat watching too on Sunday. Watch out for those seagulls though 😊

Hope everyone has a good day today.

Long day at work for me yesterday with some travel so today is going to be a quiet one. I have booked a swim, hopefully won't regret it - I also have to cook dinner tonight as DH is going to stay with his mum (recently widowed). At least it feels cool and fresh in the house.

@MewithME you are always the first to reassure people who are struggling to keep up with others' news. Please don't berate yourself. Some days we can keep up but others we really can't and that's okay. Hope the pain eases off for you 💐