What are you up to today if you have a Chronic Illness. Thread 11 🧵Last of the Summer

[MewithME]

Link to last one https://www.mumsnet.com/talk/_chat/5556429-what-are-you-up-to-today-if-you-have-a-chronic-illness-10-summer-edition

Thank you for being here, friends old and new and sharing our gentle chat, trials and tribulations.

You know the rules though...let's be good and fill up the last one 😊

Busy day today but I'm just struggling with the motivation to get going with it all. Need to pack for my solo overnight trip as I'll be leaving early tomorrow to get the bus and then the train. I've been really excited but feeling a little apprehensive today. I know that I just need to take little breaks, lots of coffee stops and worst case scenario my hotel is central so I'll go back, rest and then try again. However I am sooooo excited for museum visits without thinking of the kids or my husbands needs.

I've also got other bits and bobs of things to do and then I'm out volunteering with DD's group this evening followed swiftly by dropping her home and then joining the last few minutes of a PTA meeting. Maybe that's why I can't get motivated this morning it feels daunting.

I'm also on edge. I had another phone call about my PIP application last week. There were some discrepancies with my GP report. The report states I'm doing well and better. I had to explain that yes I do feel better because that is a result of the chemo and immuno destroying almost all of the cancer. However I am left with the repercussions of treatment and ongoing fatigue due to still being on lifelong treatment. Why is it so hard to have to flipping fight to prove things? I think I'm going to get rejected for PIP and have to appeal. However this week I've now got a OH call to get through. I'm on edge and doubting absolutely everything and what I want to do.

Good luck with the interview @Swanhilde

And good luck with the packing and the trip @Oioiqueen. Keeping my fingers crossed for you with PIP - they really don't make it easy.

Normal sort of working day here, plus a counselling appointment. Meant to have a friend coming round for tea later but I'm in two minds as to whether to postpone as I already feel quite tired and headachy. She mentioned maybe going out to eat and I'd love to but it also feels like a big decision whether to try it or not. Argh!

Totally understandable that you’re feeling on edge and a bit apprehensive about it all. working/ not working is such a big one and is complicated as there are emotions, frustrations and doubts tied in to any decision. I hope OH are supportive and make the process as smooth as they can.

As for PIP, no point saying don’t worry but definitely try to just take it one step at a time. Yes they will use any reasoning they can to turn down claims and the GPs report doesn’t sound helpful tbh 🙄 but hopefully you’ve explained the situation and you get a fair award. 🤞 If not, definitely reach out to one of the cancer charities for support and advice.

Good luck with the interview @Swanhilde

Maybe see how you feel about going out later @martha79 It’s so hard to decide how you’ll be at a certain time isn’t it!

Quiet morning here. I’ve got my stroke follow up appointment later which I’m hoping will be helpful but I’ve had some hit and miss appointments lately so who knows!

Afternoon all.
@Swanhilde good luck with the interview. As you've already been doing the role that will hopefully go in your favour. Lovely jumper btw!

@Oioiqueen so infuriating when an almost off the cuff comment can throw a spanner in the works. Really hope it works out for you. Enjoy your solo trip.

@martha79 Hope you feel well enough to go out with your friend & enjoy it.

Good luck @Swanhilde and you should definitely wear your lucky jumper!

Have a fab trip @Oioiqueen hope it recharges your batteries.

@martha79 it's a lovely day to meet a friend, hope you make it outside for a bit.

@TodayIsabetterone fingers crossed for your appointment.

@CoffeeBeansGalore so you may end up with 3 dgd if all goes well? Much as I adore my 3 dgs it was lovely to finally have a little girl in the family. It reminds me so much of when DDs were tiny. 💕

@MewithME Hope you are feeling better, it does sound like you've had a bug.

I may have missed a few but hope everyone's OK.

I am trying hard to pace but I keep being needed for my brain which is more tiring than physical demands! And it isn't 100% at the best of times 😐

Hope the appointment went well @TodayIsabetterone

Decided to postpone dinner to the weekend and doing Saturday lunch instead - it felt like too much on top of work especially as she was going to get here a bit later.

@TeaAndStrumpets yes!

I got the job 😊

Off out this morning for a trip to Hobbycraft followed by brunch to celebrate 🥳

Congratulations @Swanhilde
Good excuse to go mad in Hobbycraft 😁

Brilliant news @Swanhilde 🎉 Well done and enjoy your trip to hobbycraft.

@Swanhilde Congratulations 🥳

Well done @Swanhilde!

Congratulations 🥂 @Swanhilde

@Swanhilde that's brilliant, well done. Hope it goes really well. You deserve a cake!! 🍰sorry its only virtual.

Did an Aldi run yesterday with DH, I only go once a fortnight, with a top up in between at our local shops, because its exhausting.

I was a bit cross to find they only had massive chickens, I only wanted a small one to roast for the two of us, and the bones to make broth for Ddogs kibble. I had a whole mumsnet meal plan, only in my head, but I was still put out.

Got loads that needs doing, and absolutely no desire to do any of it. I think I left my motivation at the shops.

Well done @Swanhilde that is a great result!

Thank you all ❤️

A better day here after a few rough ones this weekend.

Stroke follow up wasn’t the best, no one seems to be able to offer help re ongoing pain or interested in finding out the cause.
I’ve been in a lot of pain for 5 months and whilst everyone is empathetic, hearing the words ´Yeah, sorry I can’t really help you with that’ yet again just felt too much yesterday. I’m so done with all of this and it’s affecting everything.
I’m currently pinning all my hopes on a steroid injection next week even though the useless physio told me it might not help but I’m not taking his word on anything anymore.

Anyway, onwards and upwards today. Visible gave me a 4 so my weekend of rest must have paid off!
Had a routine cholesterol blood test at surgery this morning and as I’ve been pretty good diet wise lately and DH was apparently starving, we were rather naughty and had a coffee and Mcmuffin for breakfast! Note I waited til after the cholesterol test 😂 Back to my porridge, or whole grain breakfast tomorrow.

Then we popped in on my mum where I had half a hug on my better side! I can’t even have a hug without wincing in pain right now. She was pleased to see us.

Sat in the sunshine with dippy dog on getting home and heard an unusual bird sound that merlin picked up as a Kingfisher! That caused great excitement between DH and I!

Now resting with dippy dog snuggled up.

@TodayIsabetterone sorry your physio hasn't helped. I was referred to a neuro physio rehabilitation centre (NHS/private funded. No cost to the user). Absolutely brilliant. Slightly different approach to standard physio as they have more knowledge of the neurological side. Might be worth investigating to see if there's one in your area you can get referred to. Made a huge improvement to my mobility, strength & balance.

Thats exactly the referal I asked for @CoffeeBeansGalore and that’s brilliant that it helpd you.

The difficulty is that I keep being told it isn’t stroke related as it’s the same side as my bleed/ stoke and it generally affects the opposite side of the body. Despite the fact it started the exact day I had my stroke and someone told me it might have affected that side because I’m left handed but the nurse yesterday disagreed despite all tests showing a weakness on that side. The normal physio is reluctant to help in case it is stroke related so I’m in a catch 22! I think I’m so emotional because it feels a bit like I’m not being believed or I’m exaggerating the pain.

Has a good talk with DH last night and I think if the steroid injection doesn’t help I’ll have to go the private route and pay for an ultrasound so I’ll have a better idea of whats going on and then I can perhaps find a more helpful physio!

Yaaaaay @Swanhilde congratulations

@TodayIsabetterone sorry you aren't getting anywhere. Pain is horrendous as you say it affects everything. Yay to hearing a kingfisher. I've never done so but apparently there is a colony (?) near us so if you are prepared to sit it out you might see or hear one. Maybe an autumn project for me to do with the Merlin App.

I made it for my overnight jolly. I asked DH if he could give me a lift to the station in the end as the bus was running late. However the train was then delayed so it would have worked out OK. Only the hour sat at the train station waiting, read my book and did some window breathing. I was OK until DD was in bits this morning at drop off and it all caused my anxiety to spike a little. Anyway I made it in by train, it was lovely seeing some different scenery as we came into the city. I'll have to sit the other side on the way back tomorrow for a different view.

I checked in at 3 and took half an hour just to rest as I was struggling a bit in the heat and my bag feels quite heavy. Had a good old wonder, spent a good couple of hours at a castle but came back just before 5 to the hotel. My feet hurt after walking 15k, my back aches and I can feel the brain fog coming and started feeling really odd like spaced out. I feel a bit bad being in a new city and not trying out somewhere for dinner but I guess we all with chronic illnesses have to be sensible? I might go and sit in the bar downstairs with my book later if I get too bored.

Tomorrow I've got a national museum to do, I'll then jump on the train mid afternoon home and hopefully be in time to collect the kids from school.

Ahh so glad you made it on your trip @Oioiqueen Well done for working on your breathing to get you through the tricky bit at the station. Your plan to chill in the hotel sounds sensible anf then you’ll enjoy the museum all the more tomorrow for being fresh.

And thanks for the support and understanding over the chronic pain. I keep telling myself its got to pass eventually. It’s more manageable with the current pain patch which is something at least but I’m counting the days til the injection as I can’t stay on opioids forever 😕

@TodayIsabetterone I really do feel for you because you are literally shouting but nobody is hearing you! When I had my pain I could shout and there was always someone who was in my corner and worse case scenario I could have had a palliative pain referral to hospice. I wish this was readily available for everyone. Being left to suffer just sounds intolerable.

@TodayIsabetterone are you still under a consultant?
My neuro consultant referred me to the hospital physio consultant. He then referred me to the neuro physio centre. Didn't go through GP or any nurses.

Thanks @Oioiqueen it does feel like very much like that.

Nope @CoffeeBeansGalore I saw a consultant when I was first discharged and this was the follow up appointment that Ive been waiting for since but it was a stroke nurse who was just ticking boxes really.