I sometimes think that living with cerebral palsy is like living behind a mask. Only someone with cerebral palsy will understand what that means.
It is difficult for me to work through each day, without feeling as though everything is a chore. I find it difficult to be present in long conversations and will periodically find myself switching off, or have difficulty connecting and hearing in the first place. That frustrates me even more.
Because there is a lack of understanding of what I deal with, it’s easy for others to comment. I try to remain upbeat, focused and positive more times than I’m not, but that proves difficult and I still feel I’m on my own most of the time.
It is very hard for me to motivate myself, and the older I get, the more challenging all of this becomes. Emotionally, I find it hard to switch off from the psychological problems associated with the condition.
There are days when I have to force myself to refocus again, so that I can move forward from all the negativity surrounding my condition, but I know I'll have to go back to the same thoughts, until I feel emotionally stronger.
Because growing up I was always around kids that were able bodied and I was always the one who had CP, I suppose people got used to it.
People that have known me for years forget I have a disability because I do not let the disability define who I am. I just get on with living my life. CP is just part of what makes me me. There are a lot of other factors that make me who I am.
Sure I struggle but most people with or without a disability struggle from time to time. That is what life is all about. It is overcoming those struggles that makes life interesting and rewarding if you can do it. Stay positive and you can do anything.
There is an element of truth in what you say Randy, but these are not my experiences. I think the positive role model you had from your mother made the belief in you stronger, which meant you could go out and live your life with cerebral palsy and that has made a big difference in your attitude.
There is an element of acceptance from some people, but not all people are ready to accept what we deal with. You were lucky in many respects. There is still prejudice out there as far as disability is concerned.
This is all so different for me. You had a completely different upbringing, I muddled through mine. I am pleased for you though.
I agree it is difficult for someone without CP to fully understand what it is truly like. It is an important part of what makes you, you.
I doubt that you would be doing so much to help others had you not found out about your CP and that should help you through difficult times.
I think you’re right. I probably wouldn’t be running The CP Diary. It has made me who I am today and am humbled by the site’s success; but dealing with CP doesn’t come without its problems.
I think if there was more understanding I would be better equipped to deal with all that I deal with, without feeling as though I am being judged all the time.
If I’d had the support too that would also have helped me cope better, through its ups and downs.