What it's really like to have cerebral palsy?

Anyone that has a disability can usually tell you what it's like to have their particular disability. But there are things that people might not know because talking about every little detail about your disability can be a daunting task.  I have cerebral palsy, and there might still be things that even my husband might not realize.

1. I love holding hands and cuddling but my body often times will not allow it. For some reason, my body becomes very tense when someone wants to hold me in any form. This can be very frustrating for yourself and partner when you're trying to cuddle or hold hands.  Often I need to hold my breath to keep my body still so I don't move.  It's frustrating for me because I love cuddling and holding hands but my body says no.

2. I do have a great bladder, but I still need to use the bathroom. Most people forget that you do need to use the bathroom even though it can be difficult to get to one.  I hate asking to use the bathroom even when I really need to because I know it's not easy to take me. So, I often hold it in pain and politely refuse to drink until I can get to a bathroom.

3. Yes, I like to be independent but help is appreciated when offered. When I'm on the floor, I can do many things on my own which is terrific. But sometimes in doing so, I get tired out or I hurt myself daily.  I'm not being lazy when asking for help.  I'm just trying to be nice to my body.

4. Even though I can't get my own food doesn't mean I'm not hungry.  Not being able to feed yourself is as frustrating as not being able to use the bathroom yourself.  You still feel hungry even between meals. Comments on the amounts you eat or drink aren't necessary because you're helping me. No one analyzes how much you eat or don't eat.  So, please when I ask for a second helping, no need to comment to make me feel bad.

5. My muscles and bones ache on the daily.  I'm never going to complain about every ache and pain I have but that doesn't mean that they don't exist. My body moves 24 hours a day 365 days a year. Even when I "relax" my body moves. Constant moving wears on your muscles and bones.  So, please don't put on a guilt trip when I don't want to be in a manual chair or do something that might make me more sore.  Certainly invite me and ask but if I say no, please understand why.

6. Yes, my children help me with some things, but no I didn't create them to be my personal attendants. Like any kid, my children help us out. I believe helping each other is a normal family action. Yes, you might see my toddler pick up my cellphone if I drop it in a store. You might see my daughter getting out my credit card so we can make a purchase.  However, you won't see them cooking meals, dressing me or other things directed to my care. Once in awhile you might see them feed me or give me a drink. But also know that I'm helping them as well like any parent would. My children know that we help each other because that's just what decent people do.

7. I am lucky to have my husband, but not because he accepts my disability.  Not to sound snobby, but I never had difficulty getting asked on dates or being in a romantic relationship.  Many guys accept my disability and would want a relationship with me.  I'm lucky to have my husband because he's funny, kind, considerate, handsome, likes to have fun, responsible and a good cook.
 


Comments

  1. What it's really like to have cerebral palsy? A very interesting and good question. I'm so amazed by your blog because of the details shared here. I salute those who have cerebral palsy because this is not a joke. Thank you for the inspiration.

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