Musings on improvement

General Community
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I’m driven to improve the journey we are on

There’s a much wider perspective for me: Post stroke I need to find a reason for acting, for being. A value generating identity. A “Why bother to get out bed in the morning” cuz it is a struggle - In a huge sense - both physical and mental :frowning:

That reason, for me at present is, “reducing the alienation gap that I was exposed to when, as a newly stroked person - I was teleported to this alien landscape and discovered that few of the inhabitants knew how to welcome the new arrivals with messages that reduced their despair dislocation and confusion”.

Some inhabitants were ‘medical - practitioners’ who knew what was happening in an abstract way and would give no illustration (or false and pessimistic illustrations) of the possible futures that exist after a stroke.

Some were newly malformed people who FELT what was happening in a visceral way but who’s ignorance gave them no vision of where they and loved ones could be headed.

There are so many gaps that few people seems to have a vision of how to plug - well I do and I’m going to pursue spreading it because I don’t see anything more valuable to fill my hours with - and I need a goal - and my goals are intellectual, improvement: policies, processes, roles, procedures, competencies, capabilities and capacity.
They’re not physically running 100 miles but they are about painting pictures of possible futures both for institutions and individuals.

They are transforming care in the services and charities that claim to serve the community of damaged people but do so in ways clearly capable of improvement and improvement with no cost.

I am about improving life post stroke.

Improving the life of people post stroke means battling as a stroke warrior everyday against the fact that my cognition is damaged, my control of my limbs is damaged, my limbs are atrophying through mal-use and the organisations that claim to help me can be myopic, are damaged, limited, ignorant, resistant to improvement… I wish they would cooperate in improvement but they don’t - they resist and they resist in a personalised manner - they become case studies in the evolving body of knowledge

Improvement is a campaign to be persued

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Thank you for being here, helping others to have improved lives through the things you share. As someone whose life has been improved by your input and efforts, I thank you from the bottom of my heart! Please keep helping as you are able.

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Maam have blessed Thanksgiving

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I think, for me, the road to improvement is built by getting outside of myself and leaving behind what I cannot do, looking to what I can do and trying to find a use for myself in the world as it is for me now.

Sounds a bit like Desiderata, doesn’t it? So I posted the text below. It isn’t meant to be a challenge so leave it if you will.

Keep on keepin’ on
:writing_hand: :smiley: :+1:

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Reading this is not a requirement or a necessity.

If this accumulation of words is too much to take on, then leave it where it is, you will be no worse for having left it.

DESIDERATA

Go placidly amid the noise and haste,
And remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly & clearly;
and listen to others,
even the dull & ignorant;
they too have their story.

Avoid loud & aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain & bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing future of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity & disenchantment
it is perennial as the grass.
Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with imaginings.
Many fears are born of fatigue & loneliness.
Beyond wholesome discipline,
be gentle with yourself.

You are a child of the universe,
no less than the trees & the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be,
and whatever your labours & aspirations,
in the noisy confusion of life keep peace with your soul.
With all its sham, drudgery & broken dreams,
it is still a beautiful world.

Be cheerful.

Strive to be happy.

===

“Desiderata” was written in 1927 by Max Ehrmann (1872-1945). In 1956, the rector of St. Paul’s Church in Baltimore, Maryland, used the poem in a collection of mimeographed inspirational material for his congregation.
Someone who subsequently printed it asserted that it was found in Old St.Paul’s Church, dated 1692. The year 1692 was the founding date of the church and has nothing to do with the poem.

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Thanks for those words :slight_smile:

I think the reply is “Yes, and…” - It’s not until the 2nd stanza but it’s encompass anything that accommodates the quest for improvement - Which I suggest is fundamental to evolution of life on earth whether human or not

The old st Paul’s and 1692 is interesting too - 1692 is old for an American church :slight_smile:

Foundation of one in London is thought to be about 1100 years previously I about 600 ad - everything is relative :slight_smile:

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@Chlodog i think that sums it up very well. It’s healthier to focus on what we can do rather than what we can’t. Easier said than done but is definitely worth trying. The past cannot be changed so for me it’s about focussing on what I can change. I can influence the future & thats where I’m aiming for.

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You’ve hit the nail on the head. Thinking too much about what has gone wrong, what should have happened, who was to blame, what you can’t do any more will not change anything and can lead you down the rabbit hole of despair. After 9 1/2 years I still can’t walk properly or use my hand, but with a bit of positive thinking I can sing in a choir, act on stage, make clothes on a sewing machine, drive a car, go on holiday and work with people who are far more disabled than me. I refuse to give in! Some help would have improved my lot in the early days but it was not available & it’s unlikely to improve in my lifetime unless there is a major shake up of services.

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Let’s set our sights on shaking them up then :slight_smile:

Mine are already helping my health board explore what transition services it delivers and how in the hospital to home step .

Forums - like this one - that add a vision of the opportunities that lie in the future and awareness of the threats in the future will develop to support us better than previously or currently

they have to be open to those who suggest that evolution - I advocate that we should take initiative because we have a visceral interest not just a salary to collect as a result of improvements that are realised and We Have a better idea of most about what will help us although we have to add imagination from some and delivery efforts from others

For example there are no facilities here that would aid in sticking to a physiotherapy regime - there could be and we all need to do exercises to build upper and lower limb capabilities -

Ciao
Simon

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this is profound and extremely helpful!

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@Chlodog
Missed you on Thursday !!

Another great post :slight_smile:
There’s a number of perspectives we should kick around some to expand / explorer

:slight_smile:

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My mum always said ‘no, you can’t make a silk purse out of a sow’s ear…but you can make something out of it if you put your mind to it’.

And that goes for life post stroke! Just thinking about all that’s been said in this thread has sent my thoughts down all sorts of avenues today. They’ve gone from adapting to life post stroke, anxiety and depression, to adapting to a wheelchair, to adaptions for using a kitchen knife with you stroke hand, to paraplegic and amputee forums…which I might add are very useful for tips :smile: I’m currently on the Scope forum https://forum.scope.org.uk/ and been on the active hands website The Gripping Aid Shop | Active Hands | Limited Hand Mobility Aids where I saw this youtube video and immediately thought of the likes of @Bobbi and @mrfrederickson https://youtu.be/jsYEjEofLOE where the has an strappy adaption contraption on his hand to utilise his bread knife.

We need to think outside the box and be prepared to explore different avenues in life post stroke. This is not the end, just a new road to walk on and only you can map the route.

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Yes Lorraine well put we are not stopped just altering course in life

In spite of all my trials as days go on I feel more like the old me.

Keep pushing forward everyone never give upAn update on my pain relief

I have been through a period of reduced pain my left side so felt it was time to reduce my1200mg a day to just 60mg, however it appears that the pain has increased so I’m resuming the full dose.

I have learned each day is different with pain levels set very early on in the day so the brain is the key controlling force and irrespective of the dose you can have a good or. Bad day.

Onwards and upwards everyone.

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I didn’t say I was any good at any of the things I take on, but I consider them to be achievements. I only act/sing because I can’t dance any more. My sewing skills wouldn’t get me past week 1 of the “Sewing Bee”, but look OK’ish. Nothing is as good as before but I’m not scared to have a go and sometimes I even surprise myself!

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@MinnieB
Absolutely right :-)!
You have a go because whatever you do is both better than doing nothing and a benchmark for improvement next time.

Then let us all know about the improvement or even just as trying because it helps inspire others in lots of ways, eg giving people ideas they wouldn’t have had, reinforcing ideas they hadn’t didn’t entertain, or sharing achievement with a similar endeavours, etc

Ciao
Simon

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@Chlodog

I am sure I’ve said this elsewhere. I thought it was on here but it could be on a other forums.

First I’m not ill, so I’m not a patient, so most of the medical professions standard approach to people who are ill is inappropriate. there is a unlevel playing field with a superior inferior / parent child/ master servant vibe to the relationship that prejudices the relationship in a similar way that words like chairman have been moved out of mainstream conversation because of the implications of gender stereotyping.

Second recovery is entirely the wrong word. I’m not going back. I’m going forwards. I’m not reverting to a path I was on. I’m on a new path with new potentials, new reachable destinations and consequently some old unreachable destinations. That old landscape I was travelling across needs to be left behind in my thoughts as well - there is the shock anger resistance acceptance SARA of grieving before the hope from heading into the new sunset.

Ciao
Simon

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