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Benefits/assistance for CPSP sufferers

Ruthy

I completely understand your frustration 🙃. And I think if you’re really unhappy about it and it’s making you more stressed and potentially causing more pain than actually helping it then drop out. They absolutely cannot stop supporting you. If it’s not working, it’s not working 🤷‍♀️ they wouldn’t stop offering pain meds if one kind didn’t work for you. Think about it, but do what’s right for you.
When you mentioned having a more advanced level of knowledge, it made me chuckle, I felt the same - but I loved being a smart Alec - doesn’t happen to me very often 🤣🤣🤣

Simon

I’m not surprised that the level of knowledge here is above the average.

A stroke discipline professor sent me a PhD thesis written by one of her students. The level of understanding it showed was below the level of understanding exhibited in the Thursday afternoon cafe each week 🙁

Unfortunately my understanding of what achieving a doctorate means has been severely reset

Given that CPSP still sits outside of the area of actual knowledge and is in the realms of informed speculation we can easily get to the boundary of known factors. We have one thing that the rest don’t have; that is a visceral understanding and an experiential appreciation

They have more book learning and more contextualization for hypothesizing solutions which is why we need to work together because no one group has critical mass

This is the sort of discussion that we ought to be able to have with the stroke association if they are to honour their claims of being our advocates.

If they do that sort of thing it’s a great shame that is so hard to find or connect to and that they are so personally antagonistic to who attempts to improve our lot

Caio
Simon

Nige

Simon evening, did you sign up for the latest research note from Neelam ?
Might be a way in ?

Nige

It wasn’t my last session today as it turned out. It was as if a plan had been hatched to make me go next week.
I didn’t have a pen and I needed to fill in part of a sheet. The person next to me lent me his and 2 mins later left in a hurry with a “give it to me next week”. I didn’t really have time to say anything other than yes will do. What Nige, were you not thinking last session. Yeh I was …….
Appointment with the physio sort of made but felt I might need to remind her to make sure her admin team really had booked something in…easier to check next week.
And finally next week’s session is neuroscience. Talking a lot more about pain itself. Who would have thought it. Sounds interesting.
Ok ok, I will go next week. No more incentives needed. Cracked under clever mind games, could have been pure coincidence of course.

One of the participants this week wasn’t in earlier sessions. She had her carer there who didn’t say a word in all the time she was there. Like an extra in a show, forbidden to say anything.
Obvious from her points that she suffers from a lot of pain but other issues as well. She had the unfortunate habit of whenever she made a point or had a question, it was never quite what was being discussed.
It was almost perfectly slightly similar but never that close. There was a grid that needed 4 colours, red, yellow, blue and green to show different activities. Its like a traffic light system which i have used before she said confidently. Some in the group thought, I can see a weakness here, others may have nodded along thinking of the 4 light traffic lights they had seen on their journey today. The speakers on the day carefully corrected her.
If everyone was asked to talk about their favourite holiday in the UK, I can imagine she would talk enthusiastically about a holiday, so that bit all good but it would turn out to be one she had spent in Italy. This slightly missing the point went on from 1pm to 3.30pm. How the presenters didn’t lose it a bit was a credit to them.

One unusual (perhaps not) event on the day was to do with benchmarking. Those that could stand or those sat down marched on the spot. How many steps can you do in a minute. Early on everyone is going at their own speed, foot landing noises all jumbled up. After about 20 seconds, the whole group seemed to have been taken over by the desire to copy everyone else. All of a sudden everyone is making a marching step exactly at the same time, no matter what their capabilities. Resistance is useless, you must comply, unless you had noticed it and it felt like you were the naughty boy in the class if you decided to go faster. You boy, the one going faster, what do you think you are doing, go the same speed as the zombies. Sorry sir.
It did make me wonder, for all of us, no matter what our issues, could being in a group doing something we struggle to do, actually help us to do it ?
It happened again with the arm curls, if you looked at the person leading the group, it was hard not to go the same speed she was. Rebel, don’t give in. Look away and the spell was broken.
Whatever the group thing is, it seemed really quite powerful. Easier to go along with it than do your own thing. Why is this ? Anyone know ?

Andrew

I am glad that I am not the only one who gives a mixture of experience in the raw and comments about how one feels. It’s almost as though there are two people: the one it’s happening to and the one watching. This is also a cri de coeur.

There are many things that we all go through including not fully understanding what was going on (cognitive issues), not quite being close to reality (traffic lights), having an idea that wasn’t really a part of the question (a foreign holiday), lack of external steering because of an overwhelming desire not to offend (the presenters between 1 and 3.30) and finally the dynamics of the group, the desire to be non-conformists and not to stand out. At Southmead I was asked, “Where are you?” quite a few times and by many. They didn’t expect a “We’re just above the Costa” or a “facing south west judging by the sun and the time of day” I was treated as a non-conformist and awkward and this was deemed a bad thing. I now know that I suffered as a consequence. I was indeed correct, but these weren’t the answers they expected, and the correct one was “A ward in Southmead Hospital”. I had felt that they hadn’t heard me properly, and for that reason I was answering differently each time! The correct answer is so obvious, especially the 10th time. An intelligent/trained person would have seen that I was right, though a little bit unusual. If someone had said, “Just give the most straightforward answer, for that is what they expect”, then I would have followed their reasoning, and they would have seen why I was doing what I was doing. But they never asked…

Group dynamics - where everyone does the same! Either all do it, and it is mediated by the leader (so all decide or feel coerced into being the same) or chaos reigns. Just the one or two behaving differently feel enormous pressure to conform and not stand out. Perhaps I was doing the same? Over time, that is. But the social pressure to do the same as everyone else is huge, and you have to be very strong to stand out.

This doesn’t really answer the question, but I certainly concur with the observation and feel the same.

Simon

@Nige
Yep
Did you?

Andrew

Baaaa 🙂

The Joke Association could do w/ reading Some of this but then we probably already expressed all of it on the forum there

I too feel it more relevant to explore other expressions of my reality to conform to the herd mentality.

One saw twice it’s been referred to as neurodivergent but from statistics attached to amygdala characteristics and chemistry it appears that those of us that are voted as divergent are actually 60% of the population but we’re a different from each other whereas the other 40% of the same as each other - We are the majority 🙂

The qn that they really struggled with was “do you know what day it is?”
To which the answer was frequently “ no I don’t but that doesn’t mean I’m confused it means that the reality for me is that the cadence you live by of needing to metre yourself against the approaching weekend is no longer relevant to me”
My awareness of factors in other people’s lives is obviously much broader than yours and yet you’re the one who’s questioning whether I’m self-aware!!
🙂

Nige

Andrew is it possible that desire to confirm could pull a stroke survivor to a fuller recovery ?
The group pressurises the stroke survivor to conform to being “healthy”, regain use of a limb, not have pain ? Wonder if it’s ever been tried….

No one consciously in my meeting got in time when doing steps. So it must operate at a different level.
Could it be driven by protecting yourself ? Less likely to be picked on/bullied/killed if you are the same as the group ?
Stand out, come from a different tribe, you are vulnerable to the mob ?

Nige

Simon I did yes, the idea seemed an ideal chance to change direction (even a little bit of the joke assoc) but who knows. Won’t get my hopes up given who it is but Neelam is possibly the exception to the rule, let’s see.
At the very least they shouldn’t be just receiving applications but proactively going out to address weaknesses in support identified by their stroke community.
Sorry for that last point, ask people, forum users, we know that’s never happening.

The universities could do worse than drop onto the SIG forum for a bit of market research ? Get it right at source.

Nige

I had do you know what date it is ? As one day was almost identical to another, days let alone dates didn’t seem to have any relevance at all. After all, it’s totally made up although time might exist it seems. Universal time in the UK didn’t exist until relatively recently in the UK, the railways needed it for timetables. We still have one clock in Bristol with an additional minute hand for Bristol time. We finally gave in to “eastern” time. Cornwall must have had hell of a shock.
I didn’t know until I read it just that we had CET between 1968 and 71. Just as an experiment.

I also had do you know who the prime minister is ? Never easy with the Tories, not sure what was harder, the days or that one.

Andrew

Nige You could very well be correct about protecting oneself, especially when you are vulnerable. Could it be that an awakening to rebellion of the sort you describe is an awakening of self, and therefore to be aimed for as a sign of improvement/recovery. Or is it just a desire to be different, a self-authentication? My feeling is both are possible for those who are essentially happy to be different. With regard to a fuller recovery, I think it is more like young animals - they start off as conforming (for all the reasons you describe) and then allow themselves to be non-conforming later, in order to build the individual.

Being the son of a railwayman, I knew about the role that rail played in the early years. I also knew about the second (sorry, joke) minute hand by the Nails - hence the phrase, “Paid on the Nail”. A sign of business dealings being done and irrevocable.

I remember the CET experiment in 60s/70s. Some folk still want BST all year round even now! The reason they cite is safety and light - tell that to northern Swedes; they’ll laugh at you. I am happy with the present system and it is to be celebrated as the approach of summer (or winter). It is strange being in say, Toulouse, in a December, with it still dark at 8.30am. The tall buildings don’t help. This is because they are effectively BST in the winter despite being roughly the same longitude as Norwich. Morning-wise there is only 10 minutes difference between Edinburgh and Bristol in the deep winter, so Toulouse is a bit more of a deal.

Nige

Andrew My instinct is to rebel and not accept the norm, or at the least I need to be convinced the norm is a good thing. Not sure that has always helped me.
I do have a real interest in the railways, passed on by my enthusiast dad, perhaps the internet of its day when they arrived in terms of impact. I find the accident investigation reports to be such interesting reading, the whole chaos of the scene and working out a cause. Perhaps very similar to crime novels.

Anyway….perhaps the exact reason for adherence to the group might not be known for each individual. Is it like some hidden form of suggestion or that the rhythm of feet landing at the same time has an element of hypnosis. I am going to be more aware of it next time it happens, it’s got me interested for sure.

Simon

I’ve read and enjoyed the posts above
I too knew about the railways and the clocks. Have you ever looked at the calendar for September 1752?

There is a quote that all progress is by the irrational man since he chooses to change the world to fit his vision whereas the rational man changes himself to fit the world.

Seems to me that stroke gives some a perspective that being true to yourself not the herd is what matters.

There have been many stories over the years of how those with something to say are both vilified and the source of progress.
Arthur C Clarke’s City And The Stars(1956) and the protagonist Alvin explore the theme

Would say more and might later but stuff to catch up with…

Caio
Simon

Andrew

Simon 1752 didn’t involve my birthday! I seem to recall that we swapped calendars and everyone “lost” 11 days. A tiny bit of creep due to the year not being precisely 365 days and no-one lept(!) every four years or so.

Interesting quote. Not heard that one before. I agree with you re perspective.

My mother used to say that arguing with me was like kicking a football at a drawn curtain. All the energy is dissipated with no final outcome! Surely, surely, I wasn’t that bad!

Simon

Andrew we swapped calendars

Yep and New year’s Day changed from March to January

I like “ kicking of football against the curtain” a visceral metaphor

🙂

Nige

https://www.nationalgeographic.com/history/article/the-new-year-once-started-in-march-heres-why

I have always thought in the UK/Europe, it was a lot easier for the early Christians to sell their religion by piggy backing onto existing festivals, winter solstice for Christmas, Easter and Eostre. The last one with similar names is perhaps a real give away ?

The Romans also seemed to have been quite tolerant of previous religions. They had so many festivals it must have been easy for dates to match

Simon

Nige
Christianity started building its churches so the rising sun came through the window in the east end that’s why they are aligned to the sunrise because then they could get the previous religion to come and sit on their seats

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