Unfortunately, I am at a loss to understand or overcome my situation. I am looking for help as I do not actually know where to begin to get help as I don’t even understand what’s wrong so i dont know where to go to fix it…
This is my story:
• 30/04/2023 I had a ischemic stroke, parietal lobe
o No physical defects, except some cognitive issues and my left hand has also “forgotten” how to type.
perhaps a little lisp
• 16/09/2021 stem cell transplant after 3 rare blood disorders
• Until my stroke I remained highly active, nearly daily activity, super strong, super fit.
o Road and trail running (Competitive and always on look out for events, and pushing for improvements and PBs, I was my own poster girl! )
o Gym and strength training
o Hiking/walking
• Sometime last half of 2023, I got depression
o Saw psychiatrist and received meds, also had menopause brain and ADD, much improved
• I last ran in October 2023 a half marathon at my soul race.
• October 2024 I walked it.
I give all this background because somewhere last year, my mojo to be active died, it’s no longer a priority but rather a chore, a bore, a frustration, and irritation. I am slowly clawing my way back and find my mojo. I joined a tiny garage gym I go to 2x a week, bio 1x a week (on advice from my neuro), I volunteer for parkrun as a tailwalker and take abeach walk if I have a companion to do it with. I have tried to run, but can’t get my legs to actually just run, I don’t even know how to explain it. there’s this weird physical/mental wall. I know/I think I have a sense of falling and that I’ll fall over. I do not know where to start looking for help because I actually don’t know what’s wrong. I feel completely lost and bereft, I miss my strong, toned body, I’m a lump now, there’s no spark, no enthusiasm, I don’t know where to turn and not even willpower is winning. Exercise and activity has also been an integral part of my long term relationship which has had to also be navigated. a running programme i know wont help. i wont do it. there’s zero inside to even get off couch. i cancelled my online coaching and strength training as i was utterly disinterested. every activity is a chore and an effort where it was not before. I’ve gone from love to hate. no one gets it, and i cant explain it either. I’m drowning in frustration and desperation, as i don’t understand so i don’t know how to fix it.
I just want to understand what the hell is going on and what happened and how to fix it.
It’s not unheard of for people to completely lose interest in things after a stroke & that might not happen straight away. Stroke is life changing & there is an element of almost having to grieve for your previous life. It can have quite an affect on your mood, morale & motivation.
I would suggest a visit to your GP to discuss how you’re feeling. They might be able to do some blood tests to check you aren’t deficient in anything. If you are there could be a quick fix.
You could be experiencing some depression and your GP can help with that too. As Simon mentioned a neuropsychologist might be a good place to start although waiting times can be lengthy.
Menopause symptoms shouldn’t be underestimated either. I had a horrendous time with my menopause in ways i never would have imagined until I suffered. Another avenue to explore perhaps.
thank you. i have an appointment with my psychiatrist and psychotherapist early November, as well as my haematologist. i was hoping to find a concrete solution. i am working on reaching out to neuropsychologists and specialised neurologists as well, i have been referred for trauma release therapy. i just want it to go away, and get back to how i used to feel. i live in south africa, but thought i’d reach out here just in case others had had similar and what they did.
thank you. i suppose part of me is also just tired and sick and tired. I’ve had medical issues since 2019, enough now! ive been on the edge and i have searched ways to come back, and thats why im searching again.
It sounds like you are doing all the right things to try & get yourself back on track. I think one thing we all wish following stroke is for everything to return to ‘normal’ quickly. It, sadly, takes longer than we all hope / want.
Be kind to yourself, take it one day at a time. Try reintroducing things one at a time. The motivation might then slowly return.
What you describe sounds very much like Apathy; mention this when you see your psychiatrist and psychotherapist.
Google Apathy after a stroke.
I remember that mental wall myself, I get it!
But for me it was also emotional, or should I say lack of emotion, which seems like a blessing is disguise after reading your story. Because I didn’t care either way, I could just get up and go. Do whatever I needed to do to get better because my feelings/emotions were set to neutral. Yes there were times when I didn’t want to do something, it was just a matter of shutting down that negativity and doing that something anyway. So my therapies were almost robotic; I’d set myself goals but didn’t really care one way or another if I achieved them or not. And when I did it was just a matter of setting the next goal…and the next…
It was about 18 months before I started feeling again; feeling enthusiastic about anything. I’m nearly 4yrs post stroke and now out nearly every day doing some form of fitness class and/or walking.
As to your left hand forgetting how to type, for me it was my right.
You’re just going to have to teach it to type again, through trial and error, repeat repeat repeat. And writing posts like these is as good a place as any to practice
I’m down to just my ring finger still refusing to toe the line It does make my hand ache though.
Thank you, thank you. reading it all makes sense now. I now have something to work with . it makes sense. will discuss with both my psychiatrist and psychotherapist. I am also doing some trauma release therapy in November.
could you refer me to what stages you talk about. i’m not sure if i’m in denial, i think its more “why me?” 5 years of medical trauma, i’m sure has got something deeply to do with this.
It does make my hand ache though. 