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Old 09-24-2006, 02:07 PM #5
NJenn NJenn is offline
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Join Date: Sep 2006
Posts: 15
15 yr Member
NJenn NJenn is offline
Junior Member
 
Join Date: Sep 2006
Posts: 15
15 yr Member
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Ditto everything Swift says.... everything. Especially the pacing bit. I cannot stress this enough. We cannot do everything, no matter how hard we try. You will feel this more and more as you get a little older and live independently (which I have no doubt that you will do )

In some ways, I wish I had felt what you're going through now at your age, so that I would have had time to come to terms with it. It hit me at about 24, and I took it hard.

Think about the activities you do in a day, and how you can switch your schedule around to give yourself time for breaks. I let myself sleep in on the weekends always. My body needs it, and I make no appologies for it. Maybe you already do this.

Maybe on days you do boccia and run errands you don't do a lot around the house.

Maybe you gradually transition to more chair use. When you use your chair more do you still feel the fatigue? If so, maybe time to look at powered mobility (something I am now reluctantly doing myself)

Fatigue and pain, in my opinion, are the hardest things to come to terms with regarding CP, and I'm sorry it's hitting you so early. My CP didn't phase me in the least when it was just "funny walking" and chair use, you know?

The stuff with your parents will even out as you get older, I promise. I had a lot of the same probs with my mom that you describe back when I was 14. That's why pacing is so important so that you'll have that ability to move out on your own some day. My mom now has chonic TMJ and her jaw feels like our legs do. She gets it now, and appologizes frequently for the crap she put me through as a kid. I'm really sorry to hear about your mom. On the bright side of this, she will soon learn about pacing, too. You might find common ground with her because of her diagnosis, and things might get easier with your parents.

Keep posting, Erin, we'll help you get through this one!

Last edited by NJenn; 09-24-2006 at 02:15 PM.
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