Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Also guidance here for if a terminal illness not sure if applies or not but they fast track these ones

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-claim/how-to-claim-if-terminally-ill/

@Orangesandlemons77 thank you for all this info I'm working through it now, so helpful. We wouldn't be eligible for UC as DH earns over the threshold for it. Once I get to the point of having less than a year to live I'll move to full PIP and other benefits. I think my pension and life insurance will pay out at this point (will clear the mortgage) too so might allow DH to drop salary and take carers allowance and possibly UC. I'm just at the point where I don't feel 100% well enough to work but not entirely sure what I'd do with my time if I stopped.

Yeh sadly the fast track route is for people with less than a year to live. Think its 3-5 years for someone with my cancer type.

I am sitting in the garden on my sun lounger drinking coffee - a perfect start to the day, feel like I could be on holiday somewhere exotic ☀️☕

No appointments or running around planned for today, just my ceramics class this afternoon ☺️

Have a relaxing day all 💕

You still could be eligible before that based on symptoms I think so might be worth checking for, I expect you know already but you can work and claim PIP (ESA is the working related one) and PIP is also not means tested so that could be an additional help to you especially if you have to work part time due to your health.

PIP is based on how you are 'the majority of the time' so they might (depending on the criteria) say you are working more than half the time (probably not if you do 16 hrs) and use that to try and turn you down (just to be aware of they do things like this) so best to discuss with e.g macmillan or cab first before putting the form in

But it could be that you could get PIP and stay working (with support) which might be useful as illness can be expensive.

There is also cont based ESA and you can do 'supported work' with that up to 16 hrs a week (I think, best check this) so that could be another option too. It is also not means tested. UC is means tested as you say that wouldn't apply right now.

It all gets quite complicated.

@Oioiqueen I can’t give you any practical advice I wish I could but just want to say your in my thoughts and I hope you can find what’s right for you.

working from home today and it is lovely to have the windows open and seeing actual sunshine and hearing birds for a change 😊

Hope everyone has a nice day!

@Orangesandlemons77 its a nightmare and far too many hoops when just feel like poop as it is. I've just been reminded that I've got two visits to the hospital tomorrow. Both parts have a Macmillan representative in a booth so I'll see if they are working when I've got either appointment. With this brain fog I just need to be able to hand over letters, wage slips etc and be like "what can I actually claim" and go from there. As you say I probably am in the criteria for things but I just need someone to ask me yes and no questions and go from there with it.

@Orangesandlemons77 I'm with you on the online GP thing, I love being able to send a message and explain things in writing, and my GP often messages through the system so I get a text with a link to write back, or a call if she feels it's needed.

@Oioiqueen I hope you can find someone who can just tell you what you can apply for. I was unemployed for a few months a couple of years ago, and that was hard enough to navigate even when I was feeling relatively OK.

Just catching up a bit and echo this from Dozy, @Oioiqueen . X

@Oioiqueen Sorry you are going through this. I have nothing useful to say but as previous echoing Dozy 💐

@Oioiqueen also sending support your way. Speaking to MacMillan sounds like a plan and hope they can support you to work out what you can apply for and also with any benefit application process when the time feels right.

Hope everyone is having peaceful days and enjoying the sunshine. I was about to write a peaceful Friday til I realised it’s only Thursday! 😊

I'm so tired. I thought i was beginning to come out of this flare but by mid afternoon every day I'm exhausted. It's very frustrating.
And a friend with ME keeps messaging me telling me how dreadful she feels. I don’t doubt it, but I truly don't have the headspace. And she never asks how I am.

@FuzzyPuffling I am feeling dreadful today too. I thought I was doing better but I'm just doing boom and bust and not pacing I think. It's bad but not sure how to get out of it. It is frustrating.

It's ok if you can't cope with your friend offloading just now. Be honest. Say you're sorry she's feeling so awful. You empathise because you're struggling too and tell her not to be offended if you're not replying for a bit because you are really unwell.

I'm having a little cry right now. It's that crashy emotional thing again. I need to really look after myself better.

Joining the overtired club. If it had just been up to me, today would have been fairly easy and an early finish at work, but unfortunately other people interfered with that.

Got takeaway delivered from local Greek cafe, so after some nice squeaky halloumi and chips, I have got into bed and I don't plan to go far before tomorrow (not that I plan to go far then either!).

I see a few of us are not having good days, same here! Just been waiting all day for a call back from the GPs av=bout pain, (hoping for a Butrans patch) instead just had the call and they say opioids ca increase pain sensitivity and want to decrease the co-codomol (which I should have known they would say) we are keeping the gabapentin for now but supposed to have the co-codomol for flare ups only.

And they are looking at a referral to the pain clinic which will be about meditation and the like and I already try doing that sort of thing

Sorry to be a bit negative / gloomy but feeling a bit left with the pain (it's from lots of bowel surgery / adhesions so not just 'in my head') or whatever they think it is.

Oh well heat helps a little bit so might try a bath tonight. Now off to do the boring recycling and try and make some form of dinner. Kind thoughts to all struggling

I think it's hard texting etc, it is in a way better posting online isn't it to a support group because then people can choose to reply. Hope you are OK

Bless you all for your understanding. Hard to come by elsewhere, as I'm sure you all know.

The saying "we can't pour from an empty cup' comes to mind

Sometimes crying can be good, releases endorphins...have you got any 'reasonable adjustments' at your work? for example having breaks could help perhaps. hope you have a peaceful evening

Can I join the overtired/PEM club? I’ve been having PEM for a while, not sure how long it will last. I feel exhausted from when I wake up to when I go to bed, every bone in my body aches

Oh wow I didn't realise there was a free app, I assumed you had to buy a device to connect to the app. I'll look into that today then! Thanks everyone.

Morning all!
.
Just caught up. Sorry for all those worrying and struggling. Good advice from clued-up people.

@JewelleryCat PEM is so frustrating and unpredictable. Sometimes we trick ourselves into it when we feel a tiny bit better and that backfires. I've had a busy week with things I had to do, and I was feeling pleased that I'd done so much. I really wanted to go out today but this is the day to NOT go out. DH is more sensible than me and reminded me that I've got three appointments early next week so will need to save some stamina for those or I'll be on my knees. He's seen it happen over and over.

Once PEM starts it's like a runaway train. You've just got to slow down and get yourself back to baseline. It's so so hard.

Happy Ostara - we have made it to the Spring equinox ☀️🌱🌷

I am off to the allotment this morning to celebrate the first day of spring with homemade courgette cake 😋

Have a restful day all 💕

Fabulous @Swanhilde enjoy your picnic!

I have to have the NHS app to see the consultant on Monday. I have downloaded it onto my phone after much swearing. I should never try and do techy things before breakfast. Too many stupid passwords to navigate. Finally realised I need my Apple password, not my gmail password or my NHS one. I assume I just enter the NHS password once I open the app, I just needed the Apple one to download the app itself? I don't think I have downloaded an app onto my phone ever. I just use my tablet because it's easier to read.

Once you get the NHS app up and running it is quite helpful I find, it is just getting there which is the problem. They seem to have made some adjustments to it yesterday which confused me. But when you find your way around it you can do things like check letters etc, and consultations and it can remind you of what was said etc, which can be useful for those like me with memory problems!

We have a separate things for e-consults which is via the GPs website, as well. I can imagine it all being a bit overwhelming for those not used to using the internet. I think you can phone the practice and they will will in that form for you if needed.

Feeling a bit buzzy this morning, so have cleaned the recycling boxes left from yesterday and also cleaned part of the bathroom. Exciting stuff here as usual!

Will probably pay for it later, oh well! Looks like a lovely day out and I think is settled for the next couple of days.