Can anyone speak to personality or mood changes you may have experienced since the Stroke? Just for background I had an ischaemic stroke. It has been a challenging time to say the least as it is for everyone. I’ve also had rehab.
But aside from all that, it’s a new year, new start and I’m looking forward again. However I have become quite reflective lately and aware that the happy, smiley, enthusiastic and funny me is now a bit more low ebb, easily frustrated, impatient and flat. I’m not rocket launch level angry . I sometimes speak less often it is to save energy or effort which saddens me. It could be a combination of things. Perhaps it is vulnerability and I hate it.
I feel like I am inside my head ALL the time. Although I can sleep well I feel like I am a computer that has to be switched off, otherwise my brain is whirring (not with anything in particular ) on alert. I can’t focus on a book so I no longer find it relaxing, particlarly as my eyes will blurr the page.
I feel calm or zen when I’m immersed in something…swimming, walking, watching a film, playing the piano. I’m not stressed but I do feel anxious bordering scared about trying new things. I don’t like to say I have a disability when I’m incredibly lucky to have survived and be independent. It’s really the feeling that I am not ‘me’ anymore. Can anyone relate? How have you got through it or reconciled it? Any strategies or tips? Thank you
I relate to what you are feeling. I am a almost 2.5 years post. I have not returned to work. I am 59 now, but also had a complex position, with a lot of tech. I was responsible and reliable for myself, family, a stroke survivor, TBI survivor as well as for all of my colleagues at work and all of our clients (600-700 at a time). Life changing so dramatically overnight was a weight I did not acclimate to well. Vulnerability partially but mostly being dependent on others for so much of that time, having to ask for help, not having a way to earn income, plus the burdens of relearning just about everything. I found it hard to feel useful for anything. I had no choice but to turn to antidepressant/antianxiety p as I have been unable to find therapy. The group of people here in this forum have helped me tremendously. I can say I was more angry than my usual self, but I am not an angry sort of person. Frustrated with myself yes, and less patient by far. I am farther from that these days for the most part but it still comes and goes. For me the second year was the hardest, because there was less and less help, and people got a bit tired of helping. Many disappeared. I don’t drive so that is the help I most needed–now I spend too much having things delivered and rarely go out unless for a medical appointment which comes with rides, or to a ballgame for my grandson. The change from working, having a social life, driving, being completely independent to being home, online only social life (a Godsend nonetheless), most of my hobbies out of reach (hiking, kayaking, swimming, dancing/seeing bands, dinner parties). I can dance at home and do all the other things, if someone will give me a ride, but that seems to be too much to ask. It is often lonely and boring. I also have trouble with my eyes but have very recently been able to finish 3 books fairly quickly. Were your eyes affected as well?
I too completely relate to what you say. I’m coming up two years since mine, unable to return to work yet and I still struggle with reading books - anything with too many characters and I’m completely lost. Quick to frustrate! Definitely! And that’s not like me. On the odd occasion I have been in a social situation where I find my old self (often after a drink!) - I quickly deteriorate and then it takes weeks to recover. Brain whirring and yet unable to focus - yep I get that too. I find it interesting that you mention swimming and walking as two of the ways you feel calm. I am exactly the same. In fact immediately after the stroke I had a compulsion to walk every day - on my own quietly. And I try and swim every day (I use to do an hour daily) even if sometimes just getting there knackers me out. I don’t mind if I do 5 minutes or 40. Just getting there is a win in my books. For me I’m begining to accept I am still me its just I have a new brain and like the old one it has quirks which I am growing to love. Losing words mid sentence just makes me giggle now. Stuttering when I’m asked a question that needs recall - again I just smile and when I have to abandon a complete conversation because my brain has gone dead - I just think - got to love this new brain! I loved my old brain but used just the same parts everyday. The opportunity now is to find new things this one can do and embrace there. Its slow, (glacial) but I can now see I have progressed and will continue to do so. Stick with it, you will love yours too.
Excuse me for busting in here, but I have a comment I must make.
I think these posts shows this Forum at its best.
The describing and comparing of experience is of great value, both to those actually taking an active part and to those who come along to read and learn of this practical involvement we share.
Simply speaking up and taking part is valuable on many levels, though I say so myself.
Be brave, join the conversation, you are needed and valuable.
Hi @DeAnn thank you for sharing your story and thoughts. You have done incredibly well. I can only imagine the challenges of relying on others as I only had this for a short while - not that anyone knows how long they will need anything after a stroke.
I am inclined to say you should happily make a nuisance of yourself to family and friends that is what they are there for! And if you want / can do any of those activities I am certain there are novel ways organisations can assist with aids and transport. We have to fight the good fight. To clarify my eyes are a bit worse but I can use them fine. The reading thing is probably more to do with needing better light, building up my attention span and exercising some patience! Thank heaven for Podcasts. Have you noticed your sense of self change or no?
Soooo good to hear this @rodkay! The one thing I notice about this stroke malarkey is that despite sterling research in this field there’s no lexicon or manual to describe post life. Knowing there are people who feel and experience the same as me is like gold. Here I am on the planet thinking it’s only me that is feels like a shark turned over where I’m relaxed in water haha! I agree just getting there is an achievement at the best of times when energy is depleted andthe brainis overheating.
And there is definitely something to be said about attention, patience and effort. The struggle is real but you don’t hear Doctors talk about this. I did read one book called ‘Healing the Broken Brain: 100 questions about stroke. It is written brothers where one had a stroke st 10yrs old and the other became a Doctor and dedicated his life to studying it. It was the perfect aid in those early stages. I guess I haven’t gotthere yet accepting the dodgy circuitry haha. What you describe is indeed a breath of fresh air andI appreciate you all taking the time to share.
Hi @mikey903 wouldn’t that be amazing. Funny I had a dream that I was told I’m the lucky winner of barriatric surgery lol. I woke up from that pretty fast. I have also seen the GP and I’ll monitor it thanks. Good that you are keeping busy. Everything is busy I think in the first year!
Hello @RedFraggle. I get it. I question daily who I am now.
Dismissed from work at 51. Medically retired due to incapacity. Sounds awful. Being capable was part of the way I approached just about everything.
Confidence in bits. Cognitive difficulties causing more impact than any other effect. Previous work very much involving contact with other people (NHS).
Plus side- have a pension ,and any amount of time. Have found two volunteering opportunities. Both involve contact with people. Both give a sense of purpose. One encourages me to believe I am capable- I am trusted with the till in the charity shop, something I would not have thought possible. The other (gardening) allows use of pre learnt skills which I can a) remember and b)carry out.
We are all works in progress. We all can build on small wins effecting bigger change in confidence and who knows where that will take us.
Putting myself in situations I am uncertain of- I constantly suprise myself. Not comfortable, or easy, but everyday really is a school day.
Remember that essentially you are the same person and trust yourself.
The stroke experience requires ongoing reconciliation as it is so sudden, without warning, and so changing.
Wishing you strength and the confidence we all need, Julia x
@RedFraggle I think some of me has changed but that’s not necessarily all bad. I find i’m not as patient with people on one hand but on the other I can now let things go that used to drive me mad.
A big part of piat stroke life is acceptance of the new us. Version 2 if you like.
I have returned to work and they say i’m doing well but they don’t see the affect it is having on me fatigue wise.
I guess it’s a learning curve & about finding the person we are & loving them. We are still us just a little broken maybe.
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?
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
. I sometimes speak less often it is to save energy or effort which saddens me. It could be a combination of things. Perhaps it is vulnerability and I hate it.
) on alert. I can’t focus on a book so I no longer find it relaxing, particlarly as my eyes will blurr the page.
. Sorry that was a novel 
. I cut that out sharpish.
