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MS… and misunderstanding

This past weekend was a terrific event to raise money for awareness and research for Multiple Sclerosis in the WDC area.  The event was Bike MS: Beyond the Beltway.  My plan was to ride.  So many things got in my way though.  I could say that I was full of excuses, but I believe I made the right decision to be on the crew and support the riders.

What was bizarre and shocking to me was to have a rider tell me I was a wimp, but even more shocking was the way.  He lumped me and all other people that have MS into a single group of wimps.

The weekend was quite warm and humid.  I woke up quite worried, perhaps I could even say I was scared about the prospect of just being outside in that heat all day, and that was with the thought that I would not be riding. My body does not react well to heat, and when I say not well I really mean it.

I am not used to being called a wimp.  It is not a word that people have ever really used to describe me.  I have to admit thought that this past year+ has left me very careful about being tired and overheating.

Today is a nice comfortable day with minimal humidity.  I just went for a 20 minute easy bike ride, and yet even that was enough to bring on the first of the reactions that I have.

My head first feels like it is in a kind of vice.  If I don’t pay attention and the feeling just gets worse.  After that I feel even more tired.  But it is odd, it is this all consuming, unavoidable, inescapable tiredness.  Next I start to get dizzy.  The kind of dizzy that you feel after you have had WAY to much to drink.  The kind of dizzy where the world starts to spin and all you want to do is lay down.  If that was not enough my eyesight then starts to go.  It is not quite like I am blink, but I also get to where I cant really see either.

Combine that with a possible broken rib from coughing so much for long because I have yet to learn my lesson.  MS makes it real hard for me to clear any kind of infection without assistance.  The hospital did not do an X Ray to save my body from any more radiation than necessary, but the doctor was able to tell me I had all of the same damage to the surrounding muscle that I would have with a broken rib.

Combine that with an insane travel schedule that has kept me from being able to do any practice rides.

And well…. I thought is safest to not ride, but rather work as hard as I could in support of the riders.  I was still exhausted from just that and I was able to save energy by working inside all day.   On Saturday I left the ride early because I had gotten to the point of the world spinning on me.  I sat and rested for a little bit until it was safe to drive, then I went home to bed.

So I guess what I want to say is that if you know someone that has an illness of some kind walk a mile in their shoes before your judge them.  Please.

I am learning how to manage my tiredness. I am working to learn to manage my overheating.  Other than staying in the AC all the time that is.

This will not stop me.  I do plan on riding next year.  I just have to figure out how….

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