The James Lind Alliance Priority Setting Partnership for Stroke in Scotland Top 10 priorities for research include “what are the best ways to help people come to terms with the long term consequences of stroke?” and “what are the best ways to improve confidence after stroke?” In this blog, Caroline Carus reflects on some of the impacts of her stroke, one year on.
I read this poem on Pinterest – it is exactly how I feel. I don’t feel me any more.
I feel minimized.
When I first had a stroke, a sideswipe across what my life had been, I couldn’t take in the enormity of it. I didn’t understand the totality of the minuses, the masses of things it would mean. I couldn’t take in that I couldn’t walk.
I miss me.
Simple things, like if I’m doing flowers I don’t have strength to use the secateurs. I used to enjoy calligraphic writing, but I can’t make it accurate any more. I used to do a lot of artistic things and I didn’t question it then. Now, I constantly question my level of ability. Now, I don’t have the confidence to go forward with it.
I’m not as good as I was.
I was told [by a senior person] “dust yourself down and just get on with things”. I could have screamed. I thought, you can’t have the slightest conception of what this means. Suddenly to find yourself unable to do all these things that you never questioned before. I’m not a ‘dust yourself down’ sort of person! I want people to understand that I’m really suffering.
You try desperately to get back to the way things were. One of hardest things is to talk to people about how to get back to how things were before. How you speak to people about that is crucial.
I don’t feel I have the confidence to speak in the manner I would have, to people who didn’t know me before. I feel they would know I’ve had a stroke. I don’t want them to know because…
I feel less of a person, less of a force.
I don’t feel that I have the same authority. I’m sure I don’t have the same effect. I’m embarrassed about the fact that I have an impediment.
I feel what do I have to offer people now? I’d always cooked. I thought who’s going to want to bother with me now? People at [Caroline’s first retirement village] spent a lot of time reinforcing that there was a lot I could still do. I didn’t have confidence that there were any real things I could do.
I try even more to be a more notorious figure than I was. To convince people that the real me is there.
I feel a million times less attractive in my wheelchair than when I trooped though the town in my designer clothes. I can’t let go of that because it’s absolutely me. It is a big part of me. Clothes and make up, my hair – the bright unusual colours, have helped me adapt. Shoes with heels, I must get back to those…
I miss me.
Confidence. You find yourself questioning everything you do. Your understanding changes – I don’t feel sharp enough. I’m nothing like as quick as I was. I’ve always been able to pick up on things quickly. Now I get really cross with myself.
It’s made me more reflective, because I do things more slowly. Sometimes the bad decisions I made before were because I didn’t think about them. I used to go at things like a rocket. Now I think carefully. I recognize that you must never drive people; they get mentally and physically shot and I must think about that. Now I know not to [drive them]. I think about that person’s ability and tolerance. I will push myself, but I recognize I mustn’t push them. Now I think about things and in some ways feel better about myself – I feel like a nicer person. But I don’t want to be boring!
People go through different emotional planes [after a stroke]. Constant security from people can help. Having someone who understands me. Someone who knows ME.
I miss me. The old me. The gone me.