Ups and Downs

My series if you will, of honesty with this disease, continues.  I know it is not as upbeat as past entries, but like I wrote at the beginning, I want and need to do some honest expression.  God is my rock and salvation, and in Him I find my strength.

There is a certain element of frustration and tension I find myself in more often than I'd like.  I'm always jerking my head or body off the end of a line or tube forgetting it's there and walking off. I'm always getting tangled up, twisting a foot in three while a fourth snares around my waist.  I'm all the time trying to reach something while my head is strained backwards, because that's as far as my bipap tubing will reach.  I was trying to clean my room last week at that awkward angle and felt like crying, as i was to tired to unhook it from the humidifier, find the connector to make it one long circuit, and drag the heavy vent off the table and across the room; let alone continue cleaning after all that fuss.  That day, I felt as though I had been utterly defeated because even the simplest of tasks were so beyond my ability.  Each day I try any such task, I failed.  No, that isn't true.  I merely cannot complete the task but am glad I tried.  I'm so grateful to my parents for their support and assistance in almost every facet of my life, around the clock.  Without their support and love, I may have given up a long time ago.

Doing a sterile dressing change on my central line is far less exhausting than changing my clothes and cleaning up a bit as the tangled mess that ensues simply trying to get clothes changed out around pumps and bags, all the while trying to keep a bipap piece in my mouth, is such a circus that I rarely bother.  Everything with mito takes extra effort, but that merely means that any completion is ten times as rewarding.

Having such simple human acts such as showering, changing your clothes every single day, and getting to go out and be in school as an almost 23 year old in what should be my senior year has brought a word to mind repeatedly as of late.  Dehumanizing.  I feel more machine than person many times as without them I wouldn't be here.  I'm grateful, and in the last few days I have found my joy again with some improvement in my energy, but overall these past few months my heart and mind have been very sad.  I finally decided I needed to do things to cheer myself up, but it had to wait till some energy came back into my bones.  I have started a blanket project for the hospital, and am looking forward to a www.UMDF.org energy for life walkathon!  If you have a child that was lost to mitochondrial disease, we are doing something to honor them at the walk.  Please contact me!

Sharing all of this is a bit embarrassing and difficult, and I'm tempted each time to just delete it and not bother.  But I deeply want to explain mito in a raw and honest way.  I want people to understand what this disease is beyond the textbook.  I'm not officially  diagnosed, but it has been my working clinical diagnosis for a few years.  I have met so many others exactly like myself, saying the same statements to each other as we explain our daily struggles.  Their stories need to be told as well.  I hope I can do it justice.  It feels impossible, but even if I tell a tenth of it I will feel better for having tried.   

With love,

Amelia