I think I'm out of spoons

This morning, I was brutally reminded of exactly what the "spastic paralysis with ataxia" form of cerebral palsy truly means, what it does to a body. First, my muscles clenched and locked in place so I could barely move, and then they started spasming very slightly. The usual thirty minute hike to the metro was strained and breathless, neither of my legs wanted to work, I was shaking badly by the time I collapsed onto a train seat, and my lungs refused to pull in desperately needed oxygen. My muscles had nearly failed all over my body, all the most important ones, the muscle groups I needed to move and breathe and think and work. Shortly after I got to work, the tyrosine kicked in, spiking my neurotransmitters enough to give me a rush of adrenaline. Then the carnitine did its work to supply oxygen to my muscles. The Albuterol inhaler opened my lungs. So right now, I'm gasping and trembling like an exhausted mountain climber, but I feel more awake. For a scary few minutes, I forgot that I could move my fingers individually on my left hand. But then the norepinephrine, dopamine and serotonin flooded my brain just enough to kick-start the dead and damaged areas.
I have not felt so much CP-related fatigue since I was a child. But I am at least now able to push past and overcome it.
A few years ago, something incredible happened that woke up the damaged parts of my brain and allowed new neural pathways to be carved and routed in place of the blocked and dead ones. For a while, in my stunned gratitude, I thought it was all because of these external forces. Then I realized that it had been me all along, because all I'd needed was that little jump start. Of course, that little jump start was followed by several others throughout the course of the next couple of years, which did help a little. But the important thing was that my brain was able to remember, grasp, and hold onto this amazing new ability to do things it had never been able to do before. It didn't need medication or chemicals to remember what to do. Which was a good thing!
Cerebral palsy doesn't affect the muscles themselves so much as the parts of the brain responsible for controlling muscles. So, whenever my body gives out, gives up, gives in, it's not the body I must wake up; it's the brain. I've discovered that supplements of tyrosine and carnitine work quickly to do just that. But beyond that, it is my personal responsibility to see that I make sure my brain is doing what it needs to do. My entire life has been about compromise. I still need to compromise on a lot of "normal" physical activities. But it's gotten much better. I could thank those external forces, but they were just stepping stones, starting points, launch pads, insert encouraging metaphor here. I really should praise myself. It's all about mind over body. It's about believing you can do it. It's about knowing what you can do and not giving in or giving up without a fight.
So I fight. Like I always have. I am still shining chrome.

Now I just have to make my body drag through the rest of hell for the day and I'll be fine. *big tired smile*

I think I'm out of spoons

This morning, I was brutally reminded of exactly what the "spastic paralysis with ataxia" form of cerebral palsy truly means, what it does to a body. First, my muscles clenched and locked in place so I could barely move, and then they started spasming very slightly. The usual thirty minute hike to the metro was strained and breathless, neither of my legs wanted to work, I was shaking badly by the time I collapsed onto a train seat, and my lungs refused to pull in desperately needed oxygen. My muscles had nearly failed all over my body, all the most important ones, the muscle groups I needed to move and breathe and think and work. Shortly after I got to work, the tyrosine kicked in, spiking my neurotransmitters enough to give me a rush of adrenaline. Then the carnitine did its work to supply oxygen to my muscles. The Albuterol inhaler opened my lungs. So right now, I'm gasping and trembling like an exhausted mountain climber, but I feel more awake. For a scary few minutes, I forgot that I could move my fingers individually on my left hand. But then the norepinephrine, dopamine and serotonin flooded my brain just enough to kick-start the dead and damaged areas.
I have not felt so much CP-related fatigue since I was a child. But I am at least now able to push past and overcome it.
A few years ago, something incredible happened that woke up the damaged parts of my brain and allowed new neural pathways to be carved and routed in place of the blocked and dead ones. For a while, in my stunned gratitude, I thought it was all because of these external forces. Then I realized that it had been me all along, because all I'd needed was that little jump start. Of course, that little jump start was followed by several others throughout the course of the next couple of years, which did help a little. But the important thing was that my brain was able to remember, grasp, and hold onto this amazing new ability to do things it had never been able to do before. It didn't need medication or chemicals to remember what to do. Which was a good thing!
Cerebral palsy doesn't affect the muscles themselves so much as the parts of the brain responsible for controlling muscles. So, whenever my body gives out, gives up, gives in, it's not the body I must wake up; it's the brain. I've discovered that supplements of tyrosine and carnitine work quickly to do just that. But beyond that, it is my personal responsibility to see that I make sure my brain is doing what it needs to do. My entire life has been about compromise. I still need to compromise on a lot of "normal" physical activities. But it's gotten much better. I could thank those external forces, but they were just stepping stones, starting points, launch pads, insert encouraging metaphor here. I really should praise myself. It's all about mind over body. It's about believing you can do it. It's about knowing what you can do and not giving in or giving up without a fight.
So I fight. Like I always have. I am still shining chrome.

Now I just have to make my body drag through the rest of hell for the day and I'll be fine. *big tired smile*