Little do people know of the battle that goes on inside.
The battle to undersatnd a conversation, or complex situation.
It feels like undersanding is just out my grasp. - Matt
We spoke to the community about what they want others to know about stroke. I’m going to share the comments over the coming months. Do you want to add your voice?
The feeling of being alone in a crowd because so much is happening around you that your brain can't process any of it. I find myself spending more and more time at home alone because socializing is so draining. Someone recently called me a hermit. This is so far from the person I used to be.
Hi Jennifer,
It can be so tough getting out and about, have you joined any online or social media groups?
There will be many in this community who completely get where you are coming from.
There are a few great groups in Tas too, and have you connected with Lisa Wicks, she is brilliant.
D
I live in a rural/regional town and have been unable to find any connections in my area.
17 months since my stroke and life seems to be getting more & more difficult.
Hi Jennifer,
Call the StrokeLine team on 1800 787 653. They will be able to connect you with services, and online stroke support groups which you may be helpful.
Reach out to Mike (survivor) from the Hobart Stroke Groups, they do Zoom meetings too. Here are the details: Hobart Stroke Support Group | enableme - stroke recovery and support and here are groups from other areas of TAS: Support groups | enableme - stroke recovery and support
Diana
You may find this podcast interesting - Toni Arfaras shares her experience of living with invisible disabilities, with psychologist and researcher Professor Ian Kneebone, and social worker Siobhan McGinniss from StrokeLine (1800 787 653).
There comments are from the Stroke Foundation Facebook community.
Plant Behrens
The loss and search for "me". What I've accepted is that me is gone. I'll have to build another me. I'm concerned about what that loss and rebuild will cost?
Caz Godfrey
Post stroke……I look like me, I sound like me, but my mind isn’t me. I can’t articulate my thoughts with words. I can’t trust my thoughts, anyway!
However, it is what it is, and could be a lot worse…..so I put one foot in front of the other…..and forward I go, with a smile on my face, ‘cos I’m still alive
Brenda Booth
When you look okay, and have “hidden” disabilities like speech and memory issues plus stroke fatigue. People including health professionals often said to me “you’ve made a full recovery”. It left me feeling like the things I struggled with were being dismissed.
That said, there is so much that I am thankful for.
Marian Arakiel
Speech for my daughter is hard everyday. She feels alone most of the time due to her severe aphasia and apraxia, even in a crowd or with family. She cannot have a conversation or guide her children. She asked me to write this (I'm Mum) as she no longer can read or write. 5yrs post stroke.
I, like Brenda, seem to other people to have made a full recovery from my stroke (20 yers ago), but my brain is definitrly different. Which is more noticeable, to me, when I am tired. As I age I find my concerns are more and more dismissed as "you are getting older, these things will change", but what is 'normal' aging, and what is stroke related? No one can tell me, and it seems like no one cares.
