3yrs strokeversary

Over the past three years, my life has been consumed by post stroke rehabilitation. I have learned all sorts of interesting and boggling things about this brain I have, which had the misfortunate to be injured during the line of life duty. An existential mishap. I feel blessed, however, that I don’t go down without a fight, and that may be due to my stubborn, foolhardy, and fanciful nature at times. There has been progress in becoming a little more able as I look back and remark at what I couldn’t easily do six months, ago, one year ago, two years ago and three. If I were to suddenly wake up tomorrow without any symptoms though, I’d probably feel like something was terribly wrong, as I have become accustomed to these daily challenges now. It’s become part of who I am and what I do to get through each day.

This worldly construct we live in has made little concession for brain injury, and yet all around me, I see irrationality and unsoundness of mind. I’ve come to appreciate why ancient peoples sang songs, told stories and meditated on spiritual and natural matters. The brain is indeed an instrument, it is more than a mere tool or device. We can change the way we think, we can change the way our brain works for us, we can hone it and mould it, plasticity is an amazing property.

The visual-spatial issues I have are still ever present, and I still partake in daily rehabilitation. The rehabilitation is actually enjoyable because I make it so. The symptoms are disconcerting and sometimes debilitating but they would be even worse if I didn’t try and balance things out with a little pleasure. I still take a stick out with me if venturing into the artificial wildness as I don’t know what kind of environment I may come across. I am fairly capable I think, a week ago I went to an anime and gaming convention with my youngest son, I was up and out at 7:30 am, and I didn’t go to bed until 1 am. I had no rest during the day, and was pretty much on my feet throughout the entire event. I caught public transport there and back. Took my son out for a meal. He struggled more with the long day than I did, but I have strategic mental resources and a survival goal embedded now in my being that I need to rely on.

It’s strange, but I feel truer to myself, if that can be considered a thing, or perhaps more naked. A lot of being human tends to be constructing ideas and ways of being that provides us with the concept of who we are. We clothe ourselves as we grow. I like the Bowie phrase, cracked actor. I feel in a sense, stroke is a crack in our sense of self. I got to a spike in the road, and the path that was Roman became blocked, my only choice was to take the overgrown path that snaked over hills, okay, let’s do it, let’s go down that path. I have all the kit with me now, all the necessary tools on my mental belt for coping with such a path, and if I don’t have the right tool for one particular reason, I shall adapt another.

I feel ready for autumn and winter, I really enjoy these seasons. All quietens down, and I feel like I can come alive again. I tend to bestir when people hibernate, and can operate at my own pace which suits me well.

I hope everyone is having a decent week of things.

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@Rups One of the best expressions of how many of us feel that I’ve read ever. Thank you for this. Spoken with clarity, feeling; so articulate; inspiring.
3 years of courage. Bravo.
Regards, Derek

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Thankyou for this, so beautifully written I am so hopeless at writing down how I feel but you have have done this so well. I too feel truer to myself and have found out an awful lot about my self, sometimes too much. Bringing more things to deal with,along this stroke journey. It has made me to assess who I really am as a person and why I am, who I am. Well done on gathering your tools, best wishes x

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@Elle1 - I think you expressed it very eloquently. None of us are going to ever be able to match or emulate Rups nor should we. It’s the rich variety of community that supports individuals :slight_smile:

@Rups - thank you for your words, as ever your ‘brush work’ gives texture and the whole picture has both familiar but also unfamiliar images and emotions. exploration of how our journeys are travels and travials in the same landscape but a different path gives everybody here something helpful to understand their own context :slight_smile:

Ciao

Simon

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Beautifully written, well done and thank you for sharing.
Regards Sue

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@Rups

Wow I echo @SimonInEdinburgh and @Elle1

You certainly have a way with words.

@Elle1 you also have a way with words and I enjoy reading your posts.

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@Rups thank you for sharing your story. You have a great way with words. You’ve come a long way in those 3 years & it’s great to read you have found so many ways to adapt to all the challenges you face.

Enjoy the Autumn & Winter. I love the colours of autumn but not the darker nights.

Here’s to your next lot of progress.

Ann x

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I wish I could have expressed that so well! There is a well known American band called Incubus which expresses this in songs. They have an album called ‘Make Yourself’ which encourangges one to think for themselves and do as one believes they should based on their own values…Taking an alternative to the usual way of doing things, they call finding a backdoor that gets one to the place they are heading, as opposed to the two diverged paths. Another song on the album is called ‘Drive’, encouraging people to Drive themselves to the destinations they desire in life, rather than chasing someone else’s idea of success. Your words reminded me of this as well as being thoughts I identify with more than ever after stroke. I knew before, but am even more intent on this way of being than I have ever been. Thank you for your description of what I have been unable to express.

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That’s a good one @DeAnn

Any top chill songs anyone?!?!?

I like perfect life by moby (i replace the drug refs with polar bears in my mind!!) ha ha

xx

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@Rups

You are a trail blazer. Since I had my ‘event’ only eighteen months ago I have noticed your progress through the window of this Forum. I have looked at what you have achieved and my first thoughts were ‘Well I’ll probably never manage that.’

I saw you out and about, then, but now I think ‘Hey this could well be possible for me.’

Share your progress, I bet I’m not the only one to be inspired by your journey. Coming to terms with how we now find ourselves is tough, but it is not impossible and hope and encouragement drawn from what others have managed to do is a huge help.

So thanks to you @Rups but also those others, and there are many, who have shown just what is possible. You are making the world a better place.

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

you are a star
:star:

. . . the nice thing about winter is getting out of the weather and settling in for a long dream of the warmer brighter days that will come.

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To anyone and everyone affected by stroke.

Today, I was on a Zoom call with a mix of people affected by stroke. There were one or two who were ten years into recovery.

It was interesting to hear that as far as they were concerned all the talk about ‘a plateau’ was so much hooey put out by insurers aimed at keeping costs down. In fact, the truth is that, after all this time they were still experiencing improvements.

They think, and I agree, that this is the sort of good news that needs to get around.

keep on keepin’ on
:writing_hand: :grinning: :+1:

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Ah but the human brain is nothing like Table Top Mountain!

We don’t reach plateaus we reach landings where the brain can stop and take a break or take time out to reassess before starting the next climb :grin:
image

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Just re reading @Rups words again makes me a bit calmer and smile - would give Suzie Dent a run for her money any day of the week

@Bobbi

I am glad you posted that and it is indeed good news.

Just for me I have not yet plateaued or even got to the top cable car station as yet.

My feelings of frustration are manifesting themselves more and more recently - I understand myself and I know why and what I have to deal with. I’m honestly surprised I do.

I know that I will keep on keepin on and deal with everything as much as I can. because I have to.

otherwise I honestly would just have to give up - but I refuse - I will be strong like a polar bear - I will. Even now at 03.21 with need to go get bloods done so leave here with housemate at 11.30 I will and I will get my BP down. I will.

in 10 years I hope to still be on the path!!

@EmeraldEyes

I can vouch for that having explored both my brain and cape town in my life!!

I find it is essential to know your limits and don’t try and do everything too soon and then maybe people can avoid failures like my Svalbard trip.

Be cool all :wink: :polar_bear:

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Yep @Bobbi I wholeheartedly agree.

There’s a proud dad on different strokes Facebook page who tells the story of his daughter who had a stroke as a child, grew up, married, had twin daughters - coped with it all one armed till they went off to uni then found a inspiring physiotherapist who worked with her and after over 30 years of having a non-functioning arm got to the point where she passed the exams to drive a school bus! :slight_smile:

This might be an outlier case but it shows that you can start your rehab at any stage and as long as you continue it you will see gains and progress.

Long ago I told my PT when they told me a plateau that they had the wrong attitude and it was launchpad. I agree with whatever quorum you were in plateaus are a combination of medical staff ignorance and self-interests. I think when they are unable to inspire people they reinforce the message “that is not there fault (cognitive dissonance)” by telling the patient “it’s your fault” only that is an unacceptable phrasing so they just say it’s the way of the world with the plateau.

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I’ve been advised by an automated suggestion on the forum to write all replies in one post, I assume this is to save cutting down html, xml, or css, or whatever we use nowadays.

Diolch @Outlander, each year the perspective slightly twists on how I perceive rehabilitation, this has to be the natural progression of rebuilding, trying not to let the ageing process cloud one’s views.

@Elle1, I feel it is not so much the words but the thoughts behind the words, so express as you feel fit, and that is the best way. I am a firm believer in having the right kit for any task, and I guess that can also be applied to mental tasks.

Diolch @SimonInEdinburgh, I find that all our differing perspectives post stroke create a picture we can all draw from.

Diolch @Susan_Jane :grinning:

@KGB, diolch yn fawr :grinning:

@Mrs5K, I, personally, like the darker nights. I like a cut off to my day. I like to know that there is an outside time, and then an equal inside time. It’s a bit pedantic of me but I think it harks back from when I was a child and my father would call me in from the garden for tea as soon as it was getting dark.

@DeAnn, :smile: I know of Incubus, they were prominent when I was a young teen, during that alternative rock and grunge period. After the clean-cut eighties, there was a resurgence of long-hair and stubble for men. I could never grow long, straight hair, as letting my hair grow only produced a rather large bouffant and I have never been able to grow a beard, can’t even achieve much stubble either. :woozy_face: I’ve never been one for chasing other people’s ideals of success, I don’t even know what success is. I’m not very competitive, even with myself. When I was a child, I was convinced that all one had to do in life was have a chest full of costumes, and if one wanted to be an astronaut, doctor or pirate, all one had to do was put on the costume. Thus, I was never a high achiever in school. :thinking:

@Mahoney, diolch yn fawr :grinning:

Diolch yn fawr @Bobbi, aye, and I think the same thing when I hear about or read from others on their rehabilitation path. It’s all still very tough at times, I have not been making progress in leaps and bounds, but rather ambles and flounders. I am sticking to my five year goal. It’s not a full recovery goal, but soon after realising I wasn’t going to be better by the summer following stroke, I moved the goal posts to five years. In the sense that I wanted to give myself time, and not be sidetracked by immediate expectations that I felt would only frustrate and depress me. I don’t feel in any rush to rebuild my life, there’s no summit in my opinion.

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@Rups

A lot have people have said it is better to apply concentration, to enjoy, or whatever applied to the journey rather than the destination.
Might be something in that.

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@Rups
That automated message about combining our replies in one comes from a guy called Jeff Atwood or @codinghorror. Built into discourse are a number of his prejudices - I use the word deliberately -.

if you read the forum guidelines for this forum it says signatures are not required - a cut n paste from Jeff’s thoughts into every forums out of the box installation. If one goes to meta discourse and signs a post it will be auto deleted by a script of Jeff’s.

On Meta- Almost every post in this forum would be flagged for ‘moderation’ and deleted as off topic. There’s a great irony that the company has called the “Civilised Discourse Construction Kit” - yet their definition of civilised has been interpreted in a way that encourages a thought police to be highly intolerant of the diversity that we prize and realise is what makes the essence of this such a valuable forum

I think the drawback with putting your replies in one post is that I can give that one post one like but I would have liked to have liked your replies to the various individuals you responded to.

This post is therefore horribly off topic but this is a forum where we are tolerant of each other’s needs - so I suggest that you reply in one or many messages as makes you feel happy. You ignore the automated messages that convey somebody’s subliminal approval or disapproval that they didn’t even realise was an inappropriate imposition when they encoded it in the ethos and is created by the operation of the software.

Running in the background of discourse forums is an admin panel which has among arguably useful statistics (which we never get to see) there are a 1 or 2 'Big Brother elements that I’ve been wondering about creating a post about.

Ciao
Simon

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Yes @Bobbi “enjoy the journey not focus on some destination” - that’s a valuable insight :slight_smile:

thank you

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Thank you so much for such an inspiring powerful message! I too, am reaching my 3 year anniversary and many things you have said resonated with how I feel, and my situation, but I have never been able to translate that into words in the way you have!!

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