I have gotten really dehydrated (hypovolemia) again and the condensed chems have made me depressed and frustrated again... and last night I was really upset and I ranted a lil on my FB page:
What's the use of the strongest heart, in a body that's fallen apart?
Most people tell me I am strong and that I have a will and stubbornness that doesn't know when to quit ... what use is that fighting fighting spirit when I can't even walk some days?
I want to be out doing something, making a difference, helping someone...
I can't even volunteer places because I never know when I get up in the morning what I will or won't be able to do that day so I can't commit to a schedule.
So what good it strength of will when you are too tired/weak to use it?
I got a couple comments most about keep fighting and this too will pass and strength isn't only physical and just focus and have patience and things will happen.
And I don't want to insult people who are trying to be nice but it really pissed me off a bit and I figure this is the place to explain that not on FB:
My point, in the original rant/post, was I can't go full tilt on a good day cause I can end up bed ridden for week, and no one seems to get it that this is a disease that fighting is the worst you can possibly do!
I'm supposed to just sit back and relax and go with the flow... I don't do that well even when I feel good, but when I feel bad I am much much worse and it feels like not fighting is just giving up and being lazy.
And I am well aware that strength is not always physical but if you don't have physical strength or energy the rest doesn't amount to anything at all. I know cause I have lots of ideas and plans and things that I think could make differences from my block to the country to the world... but nothing comes of it at all in any way except some notes on a pad of paper or bullet points on a word doc. I don't have the energy, strength, or other resources needed to make any of them come to life.
And as of this coming spring it will have been 6 years since I started deteriorating. And there are plenty of people out there in a similar state that have been this way for 20-40 years even. SO there is no guarantee at all that this will ever pass!!
I really do try to positive. And I watch inspiring movies and shows. I thought Soul Surfer was a great movie and very motivating in believing that awful tragedies can happen for reasons we would never be able to guess and can lead us to paths that allow us to make an even greater impact then we would have on our own paths. I have also read or heard of stories of people who had injuries that left them paralyzed and they went off to have great lives, or those told they would never walk again but persevered and proved the docs wrong. These people and many like them are inspiring and courageous and impressive.
But being needed to be told that if you have the will to push you can do amazing things isn't my problem. My problem is that I have a will trapped in a body and even sometimes a mind that won't work. Its not a fighting spirit I lack but the actual cellular energy to make anything that spirit is willing to push for come true.
In Soul Surfer she goes through a horrible or ordeal and she is handicapped. But except for the use of one arm, which she perseveres to learn to function without, she has her health... she is physically able to push her body as hard as she wants to train. The guys I have read about from crashes and such who were told they would never walk again but used there mind over matter force a will to make their body work didn't have brain damage and they actually had the cellular energy to make things happen.
To know your Mitochondrial DNA don't work right... that your body isn't producing some of its most important chemicals for basic functioning and you keep loosing oxygen to your brain and can get hit with the evidence that you are still dealing with some (even if only minor) brain damage (i.e. you suddenly can't speak, you loose your hearing for 20 min, sometimes you can see in the dark and smell gas 3 apts away, and every sound is screaming in your ears, or you can speak but literally can't say anything but "I don't know", you become insanely overwhelmed and unstable when confronted by simple decision making...). No these things don't happen often or not very but they do happen and it reminds me that I don't get to be someone using mind over matter cause my mind doesn't work :-/
I guess I am just tired of people telling me its going to be alright or that I am a fighter and shouldn't be negative. I went from squatting 250lbs and maxing everything but the run on the USMC PFT (I could even do pull ups instead of the flex arm hang) to not being able to walk some days, to not being able to take down the garbage or do the dishes to help out my mom who is so over taxed between work and talking care of me she has almost no time for the house its driving crazy and making her so mad I feel sicker.
I know I didn't loose everything: I have my life, my family, and there are many people worse off, but I lost A LOT and I am so sick of people not understanding how much it hurts and how much I really did loose!!
