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.

New Year, New You?

The new year has just begun, and it seems that media outlets are full of resolutions, and optimism is everywhere.  They include the new diet, the re-commitment to let your will dictate your actions, which will in turn lead to a new you. Don’t get me wrong, because I truly believe making the commitment to taking small steps will lead to a greater change. I watch it happen all the time. (And, unfortunately for those around me, if I am aware of the goal you are trying to reach, I don’t forget and tend to act as a reminder to help you achieve it; I just can’t help myself.) And see – you are now probably relieved that I am not intimately in your world to ask you if you really want to be doing that…

Yet, the annoying thing is that just as I do to others, I also do it to myself. I put the reminders in my phone, and I have been known to remove apps from my devices that have my delicious novels that I know by heart to force myself to read a new biography or take a new course to further my horizon. I will find new apps and study new piano music daily, until, one day, I realize that all my new zeal and commitment have made zero difference. I try a new activity that I am sure will finally help me achieve more muscle, to reach my allusive physical goals, and print the spreadsheets necessary to keep track of my progress. Or, like I have done this past month, I try to wean myself off oxygen… (Apparently, not the most brilliant idea that I have done. But that is for another post). And all that I have anew is a worn-out body that is worse for wear, and a very relieved mother and caregivers who are delighted to take away my new commitment so that I can rest and try to recover what I lost. It’s the same damn pattern every time. Now, if you are thinking, this is only because you pushed too hard coming out of the gate, slow and steady wins the race, etc., sure, that’s true. Except my gungho-push is a damnable snail’s pace, and it just makes me hate New Year’s resolutions all over again.

For that is the clearest example of what living as a mystery is: for whatever inexplicable reason, my body cannot move forward out of the rut that it is in. I cannot create more energy, more muscle, more fuel or anything past what I already have. I can trade out the energy or the activity one for the other, but not add anything extra. And no doctor can explain why, or even fully discern what is happening physically when it all goes wrong. ‘Tis highly annoying.

As a human being, I love the idea of hope that one year it will be different. That, however, is crazy, so I simply dance the line between despair and craziness, until one year something will break through—whether it be understanding of my medical condition or actually a physical recovery.

Until then, I appreciate all the love and good intentions that come from my friends and loved ones in finding new things to try and avenues to pursue. I delight in hearing the groans and protest of my family when they get wind of my next resolution (because we always know there will be one—it’s simply a matter of when), and their tenderness when I have to give in to the exhaustion. Until then, I strive to find my balance in this unclear journey. For, you simply never know what tomorrow, 2017, might bring. Cheers.

My Sleep Nanny

A Favorite Christmas Gift