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Old 09-23-2006, 10:10 PM   #1
CPchick
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Default Hey Nicki (NJenn) I see you're on...

I have a couple of questions about fatigue related to CP. If I remember you have experience with fatigue? Do you know what can cause fatigue and is it basically permanent? Or does it come and go? Maybe it was Katherine (JellyRJFan) who posted about fatigue, but I remember someone did.

Anyway, I need some advice on the whole fatigue and CP issue. Lately, walking has become more difficult and more tiring over the last few weeks. I don't know what's causing this exactly, I have been under a fair amount of stress (mum was diagnosed with MS recently) but I don't know if stress can cause fatigue. Maybe it's just because I am getting older? I've heard that CPs secondary effects like spasicity can increase with age. I would like to hear some of your personal experience.

So any advice by Nicki, or anyone with experience with CP and fatigue would be greatly appreciated.

P.S I just realised the CP forum was back, I should have posted in there. Karmie, you can move it if this is the wrong forum.
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Old 09-23-2006, 11:59 PM   #2
Kamie
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CP Chick,

I moved this thread your request.
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Old 09-24-2006, 02:38 AM   #3
swift
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Quote:
Originally Posted by CPchick View Post
I have a couple of questions about fatigue related to CP. If I remember you have experience with fatigue? Do you know what can cause fatigue and is it basically permanent? Or does it come and go? Maybe it was Katherine (JellyRJFan) who posted about fatigue, but I remember someone did.

Anyway, I need some advice on the whole fatigue and CP issue. Lately, walking has become more difficult and more tiring over the last few weeks. I don't know what's causing this exactly, I have been under a fair amount of stress (mum was diagnosed with MS recently) but I don't know if stress can cause fatigue. Maybe it's just because I am getting older? I've heard that CPs secondary effects like spasicity can increase with age. I would like to hear some of your personal experience.

So any advice by Nicki, or anyone with experience with CP and fatigue would be greatly appreciated.

P.S I just realised the CP forum was back, I should have posted in there. Karmie, you can move it if this is the wrong forum.
Your movement patterns can change as you grow, which can cause fatigue...but if you've been stressed it can be hard to pinpoint exactly when your walking got harder, as mental stress can be (physically) draining anyway. Fatigue isn't permanent (or doesn't have to be) - there are lots of ways of dealing with it (but only going to mention the one I should be using, as that's the one I've experienced).

Has anyone ever talked to you about pacing? (As it's something that a lot of people with CP/neuro issues find they need to do as they get older).

Basically you prioritise the things that are important to you and/or need to get done (including relaxation & having fun/'me' time), plan what you're going to do when and pace (i.e. spread stuff so that you don't over-exert yourself, or under-exert either - as that doesn't help you maintain stamina).

I can't remember if you have an OT/whether they'd be able to help you with that (as I don't know if paeds. OTs do fatigue management as much as adult ones, although it should be done alongside independence skills in my opinion ).

It's also really important to have 'me' time and not feel guilty about it when you're going through a stressful time.

How's the Boccia going?

Take care,
Swift
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Old 09-24-2006, 03:45 AM   #4
CPchick
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Thanks Swift! That was very informative, I think I may have too much 'me' time, my parents fight with me all the time about not doing anything but things I enjoy. Pacing, that is an idea I could look into more, I find myself lacking in motivation when it comes to walking and stuff. I don't have an OT but I do have a PT (whom I haven't heard from for 2 months!)

The boccia on the other hand is going GREAT! I train with 3 members of the national squad, 2 of which are paralympians! The national coach has come back to my city recently and he has taught me a lot of tactics! On the 20th of October I am competing at the national boccia champs, I'm really excited about that.

Anyway, enough with my endless boasting, thank you for your advice
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Old 09-24-2006, 02:07 PM   #5
NJenn
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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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