How I see my life with CP

Cerebral Palsy isn’t about just my physical constraints, but my emotional and mental constraints too. It is because of these constraints that I have always felt as though I am living my life inside, looking out at the world.

I have already talked about some of my symptoms, but feel I’m on my own with my thoughts and understanding of what I deal with. Understanding comes from us, but for those who have never had to deal with a brain injury, they may find it hard to understand and accept the way we are or live our lives.

Living my life with Cerebral Palsy, plays out very differently to that of my family. There are times when I have brain fatigue/fog and have to sleep to catch up, otherwise I can’t focus. During the day when I rest, my family are awake and when they sleep I find it difficult to go to sleep. When I eventually find sleep, I have difficulty staying asleep.

I think fitting my life in with Cerebral Palsy as an adult is a completely different ball game to when I was a child. As a child I had no responsibilities; so it was easier for me just to be me. I was also small so my symptoms weren’t as evident. Out of the classroom I could concentrate and deal with things, similarly to other children. Now I fit what I deal with in my life around my family and that can be hard sometimes.

There isn’t always the empathy or understanding for what I do deal with and that’s hard, but as my father once said, “when we deal with something, we’re literally on our own.”

However much others try to help, they’re not dealing with what we have to deal with and therefore don’t always understand. I believe that to be completely true of course, but we can still empathise and at least try to understand.


10 Jan, 2011

8 thoughts on “How I see my life with CP

  1. I am very lucky with my CP because I have had it since birth, I have learned to cope with it quite well.

    Sure there are things I cannot do but able bodied or disabled that happens to everyone. We all learn strategies to cope.

    There are days I forget I am disabled and just get on with what I have to do and do it. I count myself among the lucky ones. It could always be worse because I have seen worse cases of CP than mine.

    1. Thanks for your comments Randy. You are right and I do see myself as being lucky that my CP is mild, but I think it also depends on how much positive input we’ve had over the years. I know your mother was very instrumental in your upbringing which helped you remain so positive and positive about your CP.

      I think that helps tremendously, although the input for me was far from positive, probably one of the reasons I have so much to write about now. My feelings constantly change on what I deal with.

      Thanks for posting, it’s nice to have you on site.

  2. I understand where your coming talking about empathy. There just doesn’t seem to be any here. I deal with my problems in silence most of the time.

    My daughter seems to understand me a lot more than I give her credit for, but she can’t be here all the time. I have to deal with my problems myself and that’s depressing, seeing as I have a husband who is healthy as a horse and acts like he doesn’t care most of the time.

    I’ve talked to him several times but it goes in one ear and out the other. Sorry to whine!

    1. Lisa I totally understand how you feel, but probably in your husband’s defence; not everyone knows how to give empathy. That doesn’t condone his actions, I understand them. Perhaps he didn’t have that as a child.

      In order to be able to give empathy, sometimes we have to be shown. My parents didn’t show me, but I have an understanding because of what I deal with. I know what it feels like to struggle, so I see and understand others who struggle too, through my own. We have each other for support Lisa and that’s just fine.

      1. Yeah your right. Frank hasn’t had to struggle with illness like we have and probably doesn’t know how to empathize. I agree that given what we deal with; we understand others better.

  3. I agree in that it’s hard for others who haven’t dealt with CP to understand what we deal with.

    My family always wanted me to keep up with them, even when it wasn’t a possibility. I do my best to do things like everyone else, but as we know that only lasts for so long before things catch up with us.

    1. You are completely right LeAnna. I have that too, particularly when I go for walks with my family, they forget I have a problem and expect me to walk as quickly as they do. I constantly have to remind them to slow down.

      If I walk too fast my hip gives way, so yes things do catch up with us! For me it also re-enforces where I am with what I deal with. Thank you for posting.

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