Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Friday, March 13, 2009

Wii Fit and Dysautonomia

wheelchairOkay, I have been tooting the business horn for a little while here. It is important in the Unique Family, due to our current precarious financial situation. But today, I am going to talk about the young son. If you have read Updates, Updates Part 2, you know my youngest son has a rare disorder of the autonomic nervous system. In simple words, it doesn't work properly. My explanation for this is usually, think about whatever you don't think about in your body; heart rate, blood pressure, etc. Okay, now imagine if all those things didn't work the way they are supposed to. That's Dysautonomia. If you want more information, click on the title of this blogpost and you will go to the only support group for children with this disorder.

Well, my son's birthday was Thursday and he is now 13. I have been commanded to not refer to him as a "boy" anymore, but a young man. I will try to comply without giggling. I can still remember chasing a soaking wet naked, shrieking body down a hallway!

Back to the point I was trying to make. I took a little bit of money and bought a Wii Fit. Yes, we have the Wii. It actually was bought six months before Christmas 2008 and stored away for the end of the year. Now, we have the Wii Fit.

Boy, was he excited. Everyone in the house did their balance testing (don't ask me about mine. That board and I are not on speaking terms right now.) and then he went on to try everything: step aerobics, yoga, walking in place. Whatever that board came with, he tried it before the night was over.


Enter the next day.

First, he couldn't get out of bed. Then he spent the entire morning moaning, groaning about his back, sides and legs. Sounds no different than an out of shape person, right?

Except that along with the stiffness came the crushing fatigue. He was not able to do anything past open a food packet for the dog. When we went out on an errand, he sat in his wheelchair the whole time and only lasted one store.

Such is the life of someone with dysautonomia. While I am grateful he can even stand up without fainting now, and he managed to do two sessions on the board, it will be days before he is back up to anywhere near normal. This was supposed to be a alternative to the mind-numbing physical therapy sessions we were trying for the last two months. Sessions that were boring, time-consuming (have to drive to the hospital) and produced no results.

And, doubling his main medication has not seemed to make any difference. *Sigh*

At least, the neighbors will have something to do when they come over.