Author Topic: How is everyone?  (Read 363 times)

ditchdwellers

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How is everyone?
« on: 17 Dec 2022 11:19AM »
It's been pretty cold here over the few weeks or so, even in the south,  so I just thought I would check in and see how everyone is managing particularly as this time of year is not always easy for all of us.


I'm in the throes of house training the puppy and that is keeping me on my toes!
Still having supply issues with some of my meds - I've been three weeks now without my narcolepsy meds and it's nuts.
However, I'm keeping warm and filling myself up on mince pies  :f_laugh:  and I'm looking forward to my husband having time off work over the coming weeks.


Hoping this message finds you all warm, safe, and well fed.

Sunny Clouds

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Re: How is everyone?
« Reply #1 on: 17 Dec 2022 02:35PM »
I've been really, really struggling with mood and my internal clock's still a mess, and I'm missing two lovely families that have moved out in the last couple of months.

However, after a lifetime of having so little confidence in other people's views of me that it was always the other person that initiated the friendship, I'm feeling pleased that there is a relationship I turned from 'used to see in meetings years ago, bump into in the street sometimes' into 'friendship', with my big reaching out a year ago.  Also, I'm getting slightly more confident with asking neighbours for help.

I bought a laptop a year and a half ago, struggled, crashed it, couldn't cope, chickened out.  In the summer a local kid helped set it up, but then I still struggled to be brave enough to use it.  A couple of weeks ago, I decided to conceptualise it as a toy to play with and started doing online puzzles on it... 

Then this week, I've had problems trying to send some pictures to my GP.  People on a different messageboard helped me and put their explanations on my laptop and tried to do it on my desktop, but my desktop browser kept crashing when I tried to use the GPs messaging system.

So finally, thanks to those lovely online people, I plucked up courage to swap laptop and desktop, and try to do it on my laptop.  The GP messaging system has timed out for me to respond to, but that's ok, I can call on Monday and get another reference.

Meanwhile, I'm very frustrated with my local hospital audiology clinic.  For many, many years, I've had hearing aids from them.  When they need adjusting or replacing, I go into the drop-in and it gets sorted.  In the pandemic, their website said the drop-in clinic was closed, but when I tried to phone, I kept getting a message 'no one available to answer your call'.  There were also problems with their website.

Finally I got hold of someone on the phone and booked an appointment, only to get ill and have to cancel.  It's taken months to get another appointment, this time by email.  I explicitly requested an afternoon appointment, saying I'd got a sleep disorder, but was given a morning one.

I turned up to find that the bloke said things that showed that like some of his colleagues, he's rather more clueless than he should be about some things, and then found I have to get a fresh referral from my GP to somewhere else to get my hearing aids re-tuned or replaced.  Their website could have said they no longer provided that service, or they could have said when I booked the appointment.

I tried to mention else-site stuff about hearing aids people don't understand (including some audiologists) and certain people were a bit scathing, but the posters in question aren't nasty people, they're kind people.  I said that what's frustrating is they only test 6-8 pitches using louder and louder beeps, but what do they do with the pitches in-between?  I've had a whole series of hearing aids that do different things with them, amplifying some pitches and blocking out others, which is something understood by quite a few deafies I've chatted with online, so why don't audiologists get it?

Someone hairsplit between pitch and frequency and I said maybe I've got the wrong jargon, but the point is that it's only a few sounds that are musically higher or lower that are tested. 

Someone else said I didn't understand stuff to do with what the computers do and I'm afraid I got growly.  If two people have those six or eight pitches/frequencies/notes or whatever tested beep, beep, press button, and have identical charts, how does a computer algorithm know which has got more hearing loss in-between the ones it tests, and which has less?  For instance, if some of the deafness is industrial injury, the computer doesn't know how high/low the loud noise that caused the injury or damage was.

Someone else was also saying about ability to hear speech being tested and I said my hospital has never done that with me.  It pressed horrible buttons for me because I have a sense going right back to childhood that it's an everyday thing that other people think they know my personal experiences better than I do.  Gosh, how could I possibly know my hearing aids make it harder to make out what people are saying, not easier?  How could I possibly know what does or doesn't happen when I personally attend a hospital appointment?

Maybe my fresh referral will be to a clinic/practice that is more competent, but I find it heartbreaking that my local audiology clinic has, over the years, been so rubbish (with some notable exceptions) and more to the point, that so many people don't realise what rubbish service some of us have to put up with.

Yet there is so much kindness out there (including from people I may be frustrated by) and I'm still somehow here, still holding on and slowly moving forward.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Monic1511

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Re: How is everyone?
« Reply #2 on: 20 Dec 2022 08:36AM »
Hi
I would write down your frustration and send them to audiology as feedback from a service user trying to educate people who obviously don’t have a hearing impairment.
Not as a complaint but this is how you made me feel. I alway find medical staff are either too caring or treat you as a puzzle to solve but not a person.

KizzyKazaer

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Re: How is everyone?
« Reply #3 on: 20 Dec 2022 12:02PM »
Quote
I'm keeping warm and filling myself up on mince pies  :f_laugh:

Sounds like a good plan  :thumbsup:   I'm just thankful that dreadful icy weather has now given way to milder conditions, even if it did bring wind and rain.... 


Now we're into the pre-Christmas week there's extra things to do, so will be glad when all the shopping (last-minute food) is finally complete and I am safely installed at Dad's on Christmas Eve to enjoy the festivities - mainly a mega-munchathon for at least 3 days  :f_biggrin:

Quote
...I'm still somehow here, still holding on and slowly moving forward.

It's a case of, we have to really, don't we - I hope you can find some joy in the season despite the various annoyances with 'services' ...
 

ally

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Re: How is everyone?
« Reply #4 on: 20 Dec 2022 06:42PM »
I’m just plodding onwards.  I had my pre op assessment last week.  My bloods are being done at the surgery on Thursday.  That’s if they can find a vein.  The hospital never can. I’ve no idea when op is.  We’ve had no post for weeks now.  To date we have five Christmas cards.  There’s at least 15 or more missing, from friends,  and relatives. We had Christmas in Dubai with Christmas lunch, presents, and, DIL put up tree and decorations at the end of November.   We had plans to stay for Christmas.  However, our new kitchen was cancelled twice.  Finally finished last week, we now have a workable cooker, and, washing machine.  At least we can now have a Christmas dinner, and, clean clothes.   I hope everyone has a decent Christmas.   :f_cracker: :f_holly:  Love and hugs to you all  :big_hugs:

lankou

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Re: How is everyone?
« Reply #5 on: 20 Dec 2022 06:44PM »
How am I?  How long have you got? It would be a very long reply.

ally

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Re: How is everyone?
« Reply #6 on: 20 Dec 2022 07:11PM »
Sunny, hearing people never understand, and, know very little about the lack of hearing.  I’ve spent all my life trying to educate some hearing on deafness, most times it’s a waste of time.  The pre op assessment I had last week was a good example.  Despite my OH telling the nurse she was wasting her time speaking to me with a mask on, as I have no hearing, and, lip read.    She decided to shout at me with her mask on.  My OH had to intervene again.  She couldn’t grasp that I had no hearing, and, kept asking him what I could hear.  As usual, interpreter wasn’t booked, they rarely are.  I then went for an ECG.  It went haywire, and, the nurse called over a colleague, as she was concerned.  It was my implanted spinal cord stimulator interfering with the ECG.  I tried telling them, but, as I don’t communicate well, I was ignored.  By the time it was over, I was stressed out, and, my BP was raised.  What a surprise!

Sunny Clouds

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Re: How is everyone?
« Reply #7 on: 20 Dec 2022 10:03PM »
I don't know whether to scream at what you go through as someone with no hearing, Ally, or heave a sigh of relief that someone understands the lesser difficulties I go through as a severe deafie.

(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Sunny Clouds

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Re: How is everyone?
« Reply #8 on: 20 Dec 2022 10:16PM »
Ok, what I'd like for Christmas is:-

For DD's dog to be a quick and competent learner and for her narcolepsy meds to become available soon;

For Monic to make sure she gives herself as much help as she keeps giving others;

For Kizzy to finish her shopping without too much stress and to end up at her Dad's with no hitches;

For Ally to get something definite in relation to her op, and for the blood tests to go ok;

For L'Ankou to feel ok giving us a long reply (if he wants to);

For other Ouchers to feel ok about joining the thread or not joining it and to have something good about their Christmas.
« Last Edit: 20 Dec 2022 11:00PM by Sunny Clouds »
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

lankou

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Re: How is everyone?
« Reply #9 on: 21 Dec 2022 08:14AM »


For L'Ankou to feel ok giving us a long reply (if he wants to);




Note on my medical file, very thick file, will find out at post mortem.

Monic1511

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Re: How is everyone?
« Reply #10 on: 21 Dec 2022 11:29AM »
Having just helped the church provide 2000 children with toys for Christmas I’m shattered but now I need to get Christmas food to rake to mothers. She conveniently decided to move 200 miles away while needing support, so tomorrow I’m up at 4am, taxi to bus station at 5.30, bus for 8 hours, then ferry, then 1 mile before I meet the mess that’s her home.


So how am I? Barely holding onto my temper. I might just be so exhausted by the time I get to mums that I won’t notice sleeping on a brick hard sofa bed that’s 8 inches off the floor and a bugger to get out of, mind you I’ll have to clear it, restack all her craft supplies around the room/cupboard that serves as her spare room. Every time I stack it so that it’s not going to fall on me she decides she needs the 3rd box down from the pile in the corner.


Sorry guys I get so pissed off at mum expecting visitors when she knows I can’t drive.  3 days ago she texted to say she needed someone to come and walk the dog as it was too slippy for her to go out.  I was really good and didn’t reply “aye I’ll be round in 5 minutes”  :f_steam:


Is it any wonder I take proof of life photos when I leave her?


Thanks for letting me rant - better go and get on with the rest of my chores before Christmas.
I hope you have a good one
 :big_hugs:

Sunny Clouds

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Re: How is everyone?
« Reply #11 on: 21 Dec 2022 12:18PM »
Maybe food for thought in relation to looking after parents.

I remember once my father saying "I wish I'd visited my mother."  I mentally heard "I wish I'd looked after my mother" and tried to make sure I didn't have the same regret.

If I'd got a child to say something to, my version would probably be "I wish I'd done less for my father."

There's no perfect balance, but I'm going to put you on the spot, Monic, and say pose a question I want you to give yourself the answer to (I'm not demanding that you give us the answer) - you spend a lot of your time advising and helping people.  If someone doing what you're doing came to you for advice, how much unreasonableness would you say they should put up with from their parents?  How much would you say they can demand?  I strongly suspect that a 'giver' and 'helper' like you may be drawn into doing more than you have to.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

Monic1511

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Re: How is everyone?
« Reply #12 on: 21 Dec 2022 04:51PM »
Suny
It’s the guilt tripping that annoys me, I’m lonely/ depressed so why did you move to a small island away from friends and family.
I’m now trying to get everything I need to take in 1 suitcase. Yes I could stay at home but will I survive the guilt, my brother is too unwell to go anyway. I keep cutting the stays away shorter and shorter and I’ve warned her I’m already stressed so don’t be surprised if I shout at her but you know what folk like that are like, they start  :f_wah:  which triggers me  :f_bleep: :f_bleep: .
Parents  :f_steam: :f_yikes:


I don’t have children as I wouldn’t inflict me on anyone


Sunny Clouds

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Re: How is everyone?
« Reply #13 on: 21 Dec 2022 07:16PM »
I don't have any magic cures on the guilt thing.

I just know that after my parents died, I realised I'd done a lot more for them than I had to.  There's never a perfect balance.

You give so much to others.  You, yourself, are deserving.  Not quid pro quo for helping others. 

Lovely Monic, I hope mumcare will be bearable.
(I'm an obsessive problem-solver, so feel free to ignore any suggestions or solutions I offer, even if they sound terribly insistent.)

ditchdwellers

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Re: How is everyone?
« Reply #14 on: 22 Dec 2022 01:45PM »
Monic  :f_hug: :f_hug: :f_hug: Please try and be kind to yourself during your visit to your mum's.
My mum is good at guilt tripping me too, and one of the awful things is that now she is experiencing severe memory loss she is forgetting how badly she treated her own mother when she developed dementia and is trying to claim how much time she spent  caring for her when in fact she put her straight in a home at the first signs of illness. It's supposed to make my sister and I feel guilty for suggesting that mum needs support at home which neither my sister or I can give her.
Parents are capable of really twisting in the knife and they seem to know where our vulnerable points are. I'm learning to distance myself a bit from my mum and trying not to let her get to me so much. It's hard though and I hope you survive relatively unscathed from your Christmas visit  :big_hugs: