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How have you got through it or reconciled it? Any strategies or tips? Thank you 
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There is a lot of good contributions in the discussion about and if I’ve got a few more spoons tomorrow I might say more… .
… If you want to talk to folk about these challenges then remember some of us meet from 1pm on Thursdays via zoom
Ciao
Simon
You just spoke to me…Cognitive issues are the hardest for me. They have pretty much ruled out working again, but suggest volunteering. I always have, do and will continue to volunteer, but I still worry about my reliability. Sometimes, I just cannot do anything. It is getting much better with time, but has been slow coming together. Thank you for your commentary.
I have had some major changes to my personality…much more talkative, much less reliable, kinder to myself, less patient inside my head. but don’t show it on the outside, I care about much less than I used to, sometimes impulsive, and early on mood changes constantly, from angry, to sad, to joyful, to overly grateful for everything…all over the place.
I liked myself before, and although I am a bit different now, I think it is a better me. I am no longer killing myself to do, do more, do even more… I do take time for me…to relax, to sleep, to enjoy a meal, … I am slowly changing the things I don’t care for…controlling the impulsiveness better, back to being a better listener, although I can still talk a bit much.
i hope you are coming along to where you want to be. I don’t particularly like the words accepting the new you, but I get the gist of it. I like the words molding yourself into who you want to be, how you want to be. (Call me a control freak). We still have a choice in the matter of who we are and what we do.
Thank you @DeAnn for sharing your feelings and thoughts on the topic along with everyone so far. The volunteering sounds great! I will do more I think.
You are all validating me by responding because I thought it was me going psycho and screaming silently in my head. People with other illnesses may attract a level of sympathy and support from the general public and by employers (not talking about family, services and charities who thankgod are there for us). I wonder if it’s because not enough people know about brain attacks?
I honestly feel like no one (medically) talks about this adjustment. It is HUGE. We are walking around inside our heads and bodies with this elephant in the room to other people called ‘acquired brain injury’. I refuse to minimise it as I’m expected to, just because it doesn’t look like an RTC, I’m not in a coma or staring into space and dribbling as a full time hobby. To me the emotional and psychological ‘injury’ isn’t unpacked enough as worthy of investigation, research and funding. I’m guessing it isn’t a PhD topic either. I wish someone would pick this up!
It is almost as if life after a stroke (for those impacted at least) are to some extent expected to figure it out and get on with it. I know that I find it difficult to examine myself and put words and feelings to my different abilities and much of mine are so hidden that I am forced to announce them to people which feels great - NOT!!!
A simple example of this was in a theatre with someone who asked me to hold something and voiced their impatience. I was already holding my small bag, purse and a credit card. The sheer magnitude of the cognitive assault course in front of me and finger dexterity gymnastics in the next 60 seconds in my weak arm and hand was a feat many of you will understand but was not so obvious to the relative. Why should it be? The zip, grip, weight and organisation all at once was a decathlon of events for me. I felt crushed, an idiot and angry all at once. But what could I do. I didn’t want to explain or get into it. I took a deep breath, put my calm face on and blocked it out. So then I came off as aloof and dismissive when really I was hurt and reminded of my Stroke again, as I am 24/7.
I know that example is very minor but I feel the hazmat suit has to be worn at all times outside my front door and that has changed me as a person and all my interactions. As it was said before, the world is ‘out there’ and I am ‘in here’. It is how it is…for now. Hopefully in time there will be an assimilation between my two worlds 
. Sorry that was a novel 
Maybe
But it was an eloquent narrative of what many experience in there new normal emotional state
It is a PhD topic, there are quite a lot of papers on Google Scholar and under the title of emotionalism there’s quite a lot of stuff on the slightly more populist websites including the stroke association. But it isn’t recognised by people in general or even med staff or staff like those of the stroke associations et Al
It may improve over time. Fingers crossed. Maybe you could give your relative link to who some of the descriptions of emotionalism - and I absolutely understand The cognitive effort to hold something in affected hand especially if I then got to walk with something in the right hand - maybe you can explain to them?
Ciao
Simon
Thanks! Not sure if ‘emotionalism’ quite captures the essence of personality, a subset sure. I’ll have a look though cheers for that. It might be a theory but I’m not seeing it translated into practice. One neuro psychologist charged £100ph just to listen to me talk! I think she drew a picture one time as well 
. I cut that out sharpish.
Took me 2½yrs to get out of my head and back in the room, but I did get there! The fog lifted first, sometime in the first year post stroke for me.
But until I was “back in the room” my personality, emotions/moods were all stuck in neutral, numb, frozen, stuck inside my head. I soon learnt to fake interest, laughter, annoyance and took my cues from those around me. There have been times I’ve missed though.
I did explain what was going on to my family and close friends, I didn’t want to risk upsetting or offending anyone if I missed a cue. But I explained all this in writing in an email to everyone because I also have mild aphasia. To speak, my mind is always scrambling and scratting around to find words that will actually come out of my mouth and that gets exhausting very quickly. So I could write it all down far more clearly than I could ever speak it.
Yes I could get frustrated or annoyed with things, in the same way that everyone with any brand new disabilities do. That’s nothing new or unique to stroke survivors so not one of the side effects of strokes. That’s just human nature.
You have been through a major life or death trauma. That changes you!
You’re going through the menopause and that is changing you too.
Stroke brain shutting down now, that’s always been my favourite phrase to use and even taken advantage of 
I nearly cried in relief when I first got on here and found everyone could relate. We are not alone 
So if you have any other questions you’ve been pondering about, no matter how trivial, silly, whacky sounding they may be, ask away because there’s nearly always going someone on here who can relate. The only stupid question in the one you never asked. 
Your example was not minor. It might be considered minor if it only happened once, maybe, but I would be offended even if I had not had stroke. Having them makes it that much harder, then having to explain that your brain has not yet recovered or relearned yet to multi task and do it quickly. The relative was plain rude, no matter who they would say that to, and under any circumstances, but knowing yours, it was also mean. Now I am judging. Sorry. I also know these ‘minor’ incidents happen often enough to make them major in the repetitions. And now I am not judging, because some of those repeat offenses are upon ourselves. I can’t count the number of times I have called myself an idiot or a moron over my slowness, not being able to think of the right word, forgetting things, dropping things, tripping over things… Try to be kind to yourself. You are awesome!
That brought tears to my eyes, it was so beautiful. It is so much better once one realizes we can be even better than before. In some of the same ways, but also in new and different ways.
Hi @RedFraggle
Where are you based? Or is your relative based here ?
Yes emotionality isn’t a term that covers in accuracy or completeness. When I went into hospital my wife Lea @BakersBunny recorded a video diary of her fear and desolation - I had my stroke during covid lockdown so she was very limited in visiting. I’m not seen it other than the first one but the message was will I get back the same person as left me when I delivered them to a&e
In my case her later comment are "same old belligerent bugger” and the family nickname of bogg as in big old grumpy git continues to be uttered - although I think both are completely unjustified 
It’s good if you can remove from your circles those people who are drains not radiators. Some people add to your lives and some people detract and when you’re post stroke with reduced spoons carrying the drains is something you pay a much higher price for - those who are best off conclude too higher price
I think the personality bit is one of the areas beyond vocabulary so therefore understanding of what happens to a stroked head. Current research talks about voxels - like pixels in a picture but they are three-dimensional so volume elements. Medical staff talk about damage to an area of the brain. Brain mapping realises and models that voxels are part of many brain networks. So if you have damage to one physical area You probably interrupt several or even many networks
All of the processes such as decision making -whether conscious or subconscious involve emotional responses - I believe the primary mechanisms heavily involve the amygdala but the brain networks will be many and varied.
This stuff has not moved from observing what is going on through to hypothesis and theory about how to beneficially affect and certainly not into frontline clinical practise.
For example I think the role of the physiotherapist is 90% motivation 10% muscular skeletal. But that’s not how they are trained because their trainers were professionals when none of this was understood. Likewise this forum gives the capability to establish a community but it is run by IT people not sociologists and even if they were sociologists the probability that they knew the effects of stroke and were sensitive to the translation of society into a digital context is low.
There are signs everywhere that awareness is growing. For example California has recently introduced into law statutory reporting of digital community moderation. That’s a route that will raise awareness but it’s likely a minority group like acquired brain injury, traumatic brain injury, even congenital brain defects will always lag - but it’s coming. Although that is probably cold comfort for you in your need now
2¢
@SimonInEdinburgh Thanks for your insight. I am pretty lucky all things considered in my journey so far. With the internet and social media I think Stroke is gaining awareness where younger people and celebrities talk about it without fear or shame. That helps to normalise the discourse to an extent.
Although researchers may or may not be able to define our experience and root it back to a neural network, there are a lot of common themes among survivors that would be so powerful to capture and share. I studied social sciences and god knows why I’m thinking about it now. I just thought ‘Bio-Social’ (I made that up in my head but it turns out is it a real theory ha ha!) - the interaction between the biological differences in brain/mind/body and the impact on social context, relationships and development. Perhaps an extension of it is ripe for exploration with Stroke. I’m going to have a look. 
You go for it girl. I’ve written to one of the researches associated with this hospital.
National Hospital for Neurology and Neurosurgery : University College London Hospitals NHS Foundation Trust - click on research tab for;
“Get involved in research design”
Maybe one of the researchers can help. There’s an email contact.
My query was regarding simulating computer chip into damaged brain area after a bleed to help the neuron electric pathways on motor coordination.
Hi @RedFraggle
In that case have a read of this piece that I wrote on LinkedIn a couple years ago
The topic of sociology of digital community is something that I’m discussing with a number of different folk in the rehab and beginning to be in the academic community as well - demonstration of an understanding as capacity here too
Ciao
Simon
I’m in contact with a few folk that you might be interested in .
One is investigating BCI that is brain computer interface for upper limb rehab .
Another company is developing a pneumatic glove as their first product and have the vision of reducing the impact of disability
Another is using apps to provide support of cognitive processes like remembering your shopping list or doing your exercises and using GPS to identify when you’re near the shop to tell you that you have actually got a shopping list - I spoke to them this morning
Are you going to join us on zoom today or another Thursday? From 1pm
Ciao
Simon
First WOW! Read your article. The concept of a virtual community centre / gym / surgery. Just WOW! I have sent a connection request if you’re happy to connect.
I will be able to join the cafe.
Hey Simon,
Yes I should be able to join the zoom. 
@mikey903 @RedFraggle we are there now & will be for a while - drop in when yr ready
https//bit.ly/StrokeThuCafes
Hi @mikey903 please could you do me a favour and edit / remove your first sentence in your reply (not because I don’t appreciate it). I have recently learnt this forum is public to the extent it can be read by non members and via a google search. I am keen for personal or identifiable information to be removed. It is a shame but for now it is necessary. Please let me know once done, thanks 
Done. Hope that helps.