Sunday, June 16, 2013

So it is...

Each exacerbation takes a piece of me away that I never get back. A body that was once unstoppable, unshaken and ready for the world is ravaged by this disease and left deteriorating without grace.

It's difficult for me to argue that I have not given up since I really don't feel as that I have. But in the eyes of a normal, healthy person I cannot do enough. They make it sound so easy. Just do this and just do that.
They don't understand that walks across the house are marathons anymore. How working makes me feel mentally incompetent any more. Heat outdoors keeps me imprisoned. Spasticity and the related pain refuse to allow a decent rest.
When I am alone, some meals are skipped because of the effort and appetite involved, for I have trouble with both.

Sometimes I wonder if I am being punished for not following my heart as a teenager. Before my Dad had a stroke (leading to me dropping out of school to help the family), I had dreams of seeing this world. I wanted to live a free nomadic life, flowing and changing course with the wind. Chase the seasons and get chased by them. To hitch hike, train jump, bum my way to and from. To meet people and make an adventure of life.
But I fucked up. I got on the fucking wheel. I got on the fucking wheel like a fucking rat and never got off.
I could have jumped earlier but I felt like I would be abandoning my family.
I was watching the ground building the courage to jump, and then...
I jumped, and missed my mark. I waited too fucking long and it found me.....
MS kicked the door down and fucked me. This sorry piece of shit has not left since. It lurks around, randomly pulling me down and fucking me. It'll fuck me anytime it wants it. Anytime it feels like I may be getting my hopes up for a change, it fucks and it fucks. It's fucking relentless..

Its making me a little jealous and bitter. Somewhere, someone is living my life. They have the wind in their face with fresh air in their lungs. Wonders in their dreams and life in their eyes. An uncontrollable smile and laughter that can be heard a mile away.

I find myself in a similar conundrum. At a crossroads, I don't want to abandon my family but I am tempted to follow my own lead and not miss this time.
The suffering has turned me into an old man only waiting for the fucking to be over.


  1. My dear friend

    I always read your blogs. More than once. And it makes me sad to think about how you feel, and how things are not changing for the better. But I can never really understand how your life must be.

    However I admire you so very much for how you handle it all, how you cope and never give up. And how you care for your family. I feel like I know you, and I care about you. So very much! You are a good person. I don`t need to meet you to know that. Never think you are being punished! You must know that is not true.

    Your life feels sad to you. You will never be able to do all the things you dreamed of. But still good things will happen. Although different. You don`t have to climb a mountain to enjoy it`s existence. Maybe not now, but you can get a dog, meet new people, move to a better place. And in time find medicine that works better!

    You have touched my heart, and I feel like you are a part of my life. I care about you!!!
    Thank you for writing!


  2. Yeah....dude, I hear ya. Fucking sucks..
    But....aside from blowing your fucking brains out or any other self murder method....I suppose you need to just do what you can with what you got.
    It is unfair it make my core ache. Walkers and wheelchairs and incontinence and being sexually anorexic and normal people not understanding...that all fucking sucks.
    Still...find some joy, some shred of happiness. Really, it's the only thing you can do to spite this fucking holy hell of a disease.
    Try, dude.

  3. I misssss hearing from you!!!!!!!!!!
    Fucking idiot disease. I hope you find what makes you feel like you again, even with this bullshit.
    The hand you were dealt fucking blows, i know that all too well, but try to find some sort of way to win. Just a few times during this shit storm. Xoxoxo.

    Cellfood. Get. That. Shit.

  4. Thank you everyone for the comments.

  5. Thinking of you every day! Sending my love to you. K