I woke up thinking how good it would be if I could accept the things I cannot change and then I became slightly agitated, because I know I don't always manage it.
Managing my disability
There are days where everything is going swimmingly and although I don't emotionally think about it, I know that I must be coping because the Cerebral Palsy doesn't seem to bother me, then something happens and I'm back at square one again. Others always make it hard for me.
Last Sunday, my family went on an 8 mile bike ride without me around the reservoir and that's when it hit me. Biking is not something that I can do comfortably. I could probably stretch to a 10 minute bike ride, but my balance isn't great. Neither is my walking.
Accepting I deal with a disability
I need to accept that I can't do the 8 mile bike ride. I need to accept that I can't walk the 2 miles, but I can walk. I have to accept that my limit is 10 minutes of exercise a day, with stretches probably thrown in for good measure.
I even have difficulties some days with brain fatigue, with things like drying up, filling the dishwasher, tidying round. These are all the little reminders that emotionally set me back. There is another side, where I know I'm lucky because my Cerebral Palsy is mild, I get to live my life.
I know that tomorrow I can feel differently again, but I am determined to make myself feel better, more positive as time goes on. I need to bring about understanding on my condition. It is the reason why I set up The CP Diary.
I know the feeling all too well, and when I go back to square one it seems so devastating. As you know I have my limitations with my bipolar disorder, when I take on too much and stress builds, that's when I lose my grounding and it's back to square one. I have battled to try and defeat the limitation for too long and now I have stopped and accepted my limitation. Sometimes family members will try and project their problems onto me and stress me out so unfortunately I have had to sever contact with them for my own preservation. If they really cared about me they wouldn't have done it in the first place.
Brian I understand you. I think because we deal with what we do, we will always go back, but as we manage we will go forward a little too. I think accepting that we may go back will help us move forward again when we feel strong enough. I know as I am sure you do that it is inevitable. It is the nature of managing anything.
"...There are those days where everything is going swimmingly and although I don’t emotionally think about it, I know that I must be coping because the CP doesn’t seem to bother me. Then something happens and I’m back at square one again. I think others make it hard for me too."
My thoughts exactly! just this morning it took me 4 tries to pick up the tooth paste, then it just snowballed from there.
I'm glad I'm not alone in my thoughts Bill. It would be lovely to think that these kind of thoughts could be a thing of the past, but I think the nature of having cerebral palsy makes those thoughts inevitable. I think other people's understanding would probably make it easier for us to adjust so that we can cope, but it helps me to know there are friends like you who can lessen the load. I hope that thought helps you too.
I agree with what you said "other people’s understanding would probably make it easier for us to adjust so that we can cope."
I think that most of the general public just don't want to take the time to understand. Its easier to think we're weird or "retarded".
I think you are right Bill, disability isn't accepted the way it should be, but I also think people have their own problems to deal with and whatever those problems are, it does take them away from wanting to help others. Unless ones disability is evident, they may not see what we deal with, but obviously every case is different.
I think you and I would do things differently though. Because we have struggled I think we would automatically want to help others. We know what it's like to have no support.
I have my good days and bad days also. Usually on my good days I over do it because I feel so good. Than on bad days I just lay around feeling horrible and in pain and exhausted all day. But I do push myself (sometimes too hard) and do things others should be doing, but I don't have the guts to tell them I need help. I hate these diseases I have with a passion and wish so much for a normal life, but it could be worse. I know there are others that can't do half of what I do because of the debilitating disorders they have. I'm doing better though and getting on the holistic road which is helping so far.
Lisa I am learning that I need to slow down, the only problem with that is that those around me tend to slow down too! I understand your frustrations because I have had those frustrations for many years, but making myself more educated about my condition and setting up this site has given me a lot more back so the frustrations aren't as bad.
I cannot change what I have anymore than you can change what you have. I find it easier to accept more than I did, but I think that managing our conditions will be the key to how we feel emotionally and physically.
I use the holistic therapies too and find it is a good way to go. I am sure in time as you learn more about them and indulge a little you will feel so much better. As for help, ask for it, don't hold back. I think not asking for help when you need it most will make you more frustrated and resentful. Just blurt it out and see what happens!
My mother tried to teach me how to ride a bike when I was 14. The same as ice skates. It did not work. Concentrate on what you do well and life will be better for you. You are a smart person with a heart of gold, you are blessed with so many abilities. Concentrate on them. You and only you know what you do well.
Thank you. I will do.
We all face certain days where the negative thoughts are overwhelming. I always tried to push myself to keep up with other people my age and do all the activities and such with the same intensity as them. Sometimes I can get away with it and sometimes it is impossible to do so. When I do push myself to the limit like that I pay for it later. I've gone back and forth emotionally my entire life. You are not alone in the struggle or in feeling that way. You are a strong woman and you have dealt with a lot. I know you will endure what is thrown your way.
I think you are absolutely right LeAnna, dealing with cerebral palsy will always throw negative thoughts our way, but on our good days they will probably stay on the back burner until something changes for us.
I didn't push myself on anything, because I was never encouraged to aspire or work towards anything. I think you are lucky you were able to do that because you have probably achieved more than me, but pushing yourself also brings with it its limitations, together with fatigue and pain from over-exertion.
It is wonderful to know we can support one another now. It makes a difference to know that other people understand what we go through.