After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Music—My Life Force

Music—My Life Force

Have you ever had a really bad day, as if life itself was beating you, and you just decide to ... dance? I mean, rock on hard, dance as if you are Hugh Grant in Love Actually, and the world - which has beaten you to the pulp - is really kneeling at your fingertips? Well, if you have never been so low, you are fortunate. While I must say emotionally it is not  a regular occurrence, physically, it's almost every day for me. Especially, if say, I want to actually try to do something fun - like ride in my amazing tank chair. The activity drains all of the life and energy out of my body, and I am thus left with a damp rag of a skeleton for a body while it takes it's necessary hours to recover.

In this period with my body as a noodle, my mind is not able to turn off and sleep as well - you have to love Murphy's Law- though it is not so alert or able to process much of any thought, let alone remember it.  As I take no medicine or know of any pill to help (after all, no doctor can explain what is actually occurring to either cause such deep fatigue, or more puzzling, how the resting need is so acute), my tonic is simple: music.

My head phones are placed over my ears and the jamming begins. The music itself can vary, though most often it's some form of classic rock thrown in with contemporary opera, country, new age, - and well any song that ever caught my fancy that my iPod shuffle goes to next. And I play it loud. The vibrations go straight to my heart and slowly my ice cold hands, feet, arms and legs begin to return feeling and color, as in my mind I am dancing on the ceiling. It's freeing, it's liberating, and it restores my soul and attitude to being gun-ho, gally-up, hoorah, and all the other one word sayings that simply mean: rock on. No matter what, just rock on.

By the end of the resting period / jam session, I am no longer blue, most of the time coherent, and able to move and bear the normal capacity of weight barring in a transfer. Yet, as odd as it may seem, I am more tired after the dance off then before the rest. (Partly because when I am so blue I don't feel so much as tired like I vaguely recall it felt like after a normal work out - rather that I have an elephant sitting on my body and squishing my brain, and partly because I really am fatigued because I just got my heart rate and blood pressure up / back to normal).

While it's a tight rope not jam out too much (though, too much of a good thing, is still a good thing) and restore myself for the next task as soon the recovery is over, it's truly one of the best medicines life ever produced. Rock on.

(And to those that personally know me and have come in to find my with my eyes closed and my head phones on, yes, you know now what I was doing).

New Patient Forms — Save ME!

Treadmill: Not Me, My Dog