What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

I say it's their loss. You've done your bit!

@TeaAndStrumpets would it help if he did online banking instead of telephone banking?

@MewithME apologies if you’ve answered this before but is there any way your mum and/or sibling could meet you halfway instead of you driving a long time to see her?

Probably mentioned on a previous thread when I was stressing about it before. No, Mum is 80 and feels she can't manage the train and certainly wouldn't be happy with her driving far.

She doesn't like travelling with my sibling and family either. Drives too fast. Kids too loud. It's all too much to think about. They're not easy to be around and it hurts my head when I'm not well anyway. I go round and round and have no answers. I struggle to even ring them.

Last time they basically told me to ring back at X time. Then they didn't answer. Then they rang half hour later while driving somewhere and couldn't be bothered if I was just ringing for "light chat". 🤯.

When I go up and see Mum, reality is I'm too exhausted to do anything much when I'm there. I just don't have any answers.

None of them have been to where I live for years.

@MewithME I’m sorry for you going through that, sometimes families suck. I completely understand that you wouldn’t want your mum driving far or use the train. Is there any way option for her to move closer to you? Maybe you have to go low contact with the siblings because they don’t sound great

Just seen this thread pop up. Well I may have finally found my people. I'm just sitting in bed thinking about the 3 million jobs which need doing which I previously would have gotten done in an afternoon before my illness. Ah well. Today I'm trying to have a house reset but pacing myself so I don't burn out.

Yes it really would! I have had online banking for years but he didn't bother setting it up for himself, just uses mine (joint account) which he is perfectly OK with. Serves him right of course! TBF the telephone system used to work well for him but it isn't very user friendly any more.

@TeaAndStrumpets I’ve never used telephone banking so not sure about the process and I’ve only used online banking in the last few years and I did think to myself “why didn’t I do online banking earlier” because it is so easy to use rather than go into the branch every time

@MewithME and @TeaAndStrumpets a I'd love an e-consult option but my surgery doesn't offer it; you have to ring at 8am, the line is always busy so I have to redial again and again until I finally get through, then it's a gamble if there are appts left. It's truly awful but the GPs and nurses are good so I don't want to change surgeries.

@MewithME Sorry to hear about your family being unreasonable, it seems some people just refuse to try and understand this illness. You shouldn't have to make yourself ill just to keep them happy. My MIL has no idea and can't understand why I don't want to take a long-haul flight twice a year to visit. I've given up explaining it to her as she seems to think illness is just a state of mind.

Have been talking with dh today. I think we're going to plan to paint the shed. He said I should do a mural but I'm not well enough for all that - so I think it'll just have to be a nice bright colour instead. It's the small things that matter in my life these days!

And welcome, @apeaceful2026 ! I also feel that way. I've tried support groups before but found them very negative. This thread is lovely and gentle and supportive.

Hello and welcome! Everyone here is so friendly and supportive. I hope you enjoy popping in.

I've just had a text from my GP asking me if I'd like to take part in some kind of patient survey.
I phoned and asked what it was and involved.
They don't know but will register my interest.
I asked if it was a box ticking exercise, the reply was snorts of laughter and a barely held together voice squeaking 'I couldn't possibly say'!!!
What are they up to now?
I did laugh as well though! We all know.

It must be the day for it! I just got a satisfaction survey from my dentist! They're all at it. I frequently get surveys from Evri but because it's the same chap every time I just go through and give every possible praise!

I got an email from microsoft about buying extra storage, then realised I'd already signeed up for it last year so I am already paying. I have still not found out how to use said extra storage but will just have to wait and see if my tablet spontaneously combusts from having too many cute baby photos on it.

DH and I are the blind leading the blind but he came back from the bank in triumph having set up his own internet banking with the aid of a human. I need a new battery for my keypad but it seems I now have to go in with my passport to do it! Oh god give me strength.

Went for an ultrasound this morning to monitor something else but they found I have gallstones, oh dear.

I don't want more surgery really, have had too much already. Found some kind of medicine online which seems to help them without surgery and will ask about that.

I lost weight in recent years and must be that as they weren't there before. I did ask about taking this thing, ursodiol then but they wouldn't let me. Oh well.

At least it is a bright day out, cold though.

Ah yes the GPs are forever sending us these feedback texts to rate them after each appt, mind you they seem nicer since and more pro-active so maybe it does help?

@Orangesandlemons77 I have gallstones and touch wood, I’ve not had an attack since 2022 I think my last one was so because they’re so infrequent then I decided to not have surgery and see how it goes. I have heard that losing a lot of weight very fast like on weight loss injections for example can cause gallstones. What medication can help gallstones and help them how?

Had my prescription review. Anyone else always worried that they'll take something that works away from you??! Anyway, it's all good and I get to keep it all 😆

She did ask about my appetite though, which is rubbish and has been since I got LC. But I do make sure that I eat a healthy diet even if I'm not hungry 🤔

GP phone call booked on Thursday about my ears. I'm sure I'll be asked for multiple feedbacks too 🤣

(They have improved dramatically recently.)

I would be very cautious about not having gallstone removed, I’d ask for very regular checks as they can cause inflammation that can massively increase the risks of gallbladder or biliary cancer. https://www.cancerresearchuk.org/about-cancer/gallbladder-cancer/risks-causes I don’t want to cause undue worry; but with my recent family member and that she was never told there was a link until it was too late, I think it’s important to be aware. It’s a not very common cancer but apparently it is increasing in prevalence. Size is a factor, so large stones are more of a risk. With my relative she didn’t have any specific attacks but also was not offered any monitoring or scans after she refused surgery. I had my gallbladder out as I was continually getting attacks and bar a nasty infection it’s been unremarkable aside from being well.

Afternoon all, managed the trip to MILs again today ( in the attempt to get the dog used to being there before we go on holiday in July) and the dippy dog is getting better with her. She loves the different garden so was running around happily distracted most of the time to bark much. Really hoping taking her often will make it less scary for her when we have to leave her there. MIL is off abroad for another month next week so need to try and fit in at one more visit if I’m able.
Then I came home and fell asleep!

Welcome @apeaceful2026 Hope you enjoy our ramblings and support to each other.

Sorry to hear about the gallstones @Orangesandlemons77 always worrying when something else pops up.

@TeaAndStrumpets your DH and internet banking made me smile as my DH is very similar! He did set it up a few years ago when I did but he can’t remember log in details so cant access it at all now. He has memory problems tbf so can’t actually remember his memorable information 😊 I’ve tried helping him reset but I think we both need to go into a branch. It’s on our to do list. That means a trip though as local branch that he used to pop into has closed! I can access our accounts online so it’s not been a big issue but if anything were to happen to me, he’d be so stuck. I should really write down passwords etc but it feels so patronising as he’s able to set these things up and sort them initially, just gets stuck if he changes devices or doesn’t use something for a while.

@TodayIsatrickyone I know it's maddening! We really need to get our banking sorted. I have occasionally asked what would happen if I had to do probate and he just says it's all in the filing cabinet which is not very useful. In fact we've got two, they hold all the vital documents plus hundreds that should have been got rid of years ago! Today he has been searching for our boiler installation details, spent all afternoon looking, no joy. It's definitely guaranteed and registered, but they would need the technical stuff if we claimed. I do despair.

Your little dog sounds very happy!

Evening all and welcome @apeaceful2026

Sorry about the gallstones @Orangesandlemons77

Had a nice day here with friends visiting - I spent most of the morning in bed, they arrived at 2pm and I did an easy late lunch with bread, cheese and lots of deli bits. And they brought homemade cake 😍 Had a walk round the local city farm (so many baby animals at the moment!) and then my visitors nearly fell asleep on my sofa - apparently my house is very relaxing!

My dad's still in hospital but glad they're being cautious and checking everything out. Chatted to him this morning and he was in quite good spirits.

Ursodiol, seems can help dissolve them?

https://medlineplus.gov/druginfo/meds/a699047.html

@martha79 good to hear your dad is doing OK. Your friends sound lovely!

@Orangesandlemons77 thst sounds very interesting. I’ve never heard of that medicine over here

I can't remember where I first heard of it, oh yes I think it was for people having weight loss surgery, they are prescribed it as so likely to get gallstones.

I the asked the GPs if they would prescribe it, I also lost weight pretty slowly (over 2 yrs) they wouldn't prescribe it preventatively unfortunately.

It's daft really as now they might end up having to do surgery instead. But I might ask for it while waiting on possible surgery, if they think needed.

Let me know if they prescribe it and it helps! I read somewhere around 50% are helped with it, but it does have some side effects.

I found this which seems to say it is used on the NHS though not in Nice guidance? Bit odd, anyway I will ask about it.

https://www.cheshireandmerseysideformulary.nhs.uk/docs/files/ursodeoxycholic_support.pdf?UNLID=9984979752025447456

Yes, I read the side effects and wasn’t that keen on them lol. Luckily I haven’t had an attack in about 4 years touch wood. I’m presuming I still have them. Maybe it isn’t in the guidelines because it isn’t safe to prescribe on the NHS?

Yep- exactly that- although why my upper arms are aching after walking uphill is a complete mystery. I definitely have more questions than answers about this illness.

Noo to the horn beeping. Nothing worse than a rude awakening.

Haven’t kept up with rest of thread as have been flat out trying to stay on top of stuff and intersperse it with enough rest to keep going. Unsustainable.

Wishing you all well this evening.

Morning all!

Hope you are all enjoying the Easter holidays (where appropriate!) and managing to relax.

I have got over my panic about my cataracts and bought a little cassette player and some audibooks to tide me over for a few weeks between first and second eye ops. I'll be OK I'm sure but knowing I've got something to distract me makes me feel better prepared. I did look at audible but once my eyes are working properly I'll be back to normal paper and print. Me with a book in a quiet room is my happy place!