Life, Changed.

It started with a twitch.  My hand shaking on the gear shift of my car and stopping after a while.  Shaking again, harder, and continuously to the point that I ended up at the emergency room.  They tried Ativan.  I passed out and still shook.  They ran CT scans for damaged nerves, found none.  They did physical after physical, consulting different doctors and sending me to different places.  I was checked for everything from Lyme Disease to HIV.  They found nothing.  One doctor suggested it was psychological.  I had to fight to be heard, that I wasn't doing this to myself and that I wasn't crazy. After blessing him out seven ways to Sunday, he finally got me in for an MRI.  When he had said it was all in my head, he was right . . .except that it was literally in my head.  There were spots of demyelination on my brain.  I was damaged.

It's been seven months since that day.  I have gone through one neurologist who's main concern was doping me up and not dealing with me.  I literally talked to her nurse longer in one session than I talked to her combined.  I have more symptoms and they're sure I have Multiple Sclerosis.  It feels like a death sentence. I know, anyone reading this is going to say "well, I know someone with MS and they can do .  . ."  It isn't my job to educate others about my illness but I can say this-no one with it is the same.  What one person is feeling, another may not experience it at all. For me, it's a raging fire going through my body, my right hand has a constant tremor, my legs shake after five minutes of walking around or a few minutes of standing-to the point that I have to sit down, my hearing is gone in my right ear, and I have no spasticity in my back for days at a time.  I have memory and speech problems. 

It has halted life for me as I know it.  I went from working two jobs and going to school to there being days where getting out of bed is impossible.  I'm on more medications to treat symptoms than most 90 year old people.  My love for words has been so stilted that I'm reduced to stuttering and chicken-pecking on a keyboard with one hand.  (This is . . .frustrating. I had beautiful handwriting, always knew the words I needed when I needed them, and typed 92 wpm.)  I laughingly say I have Swiss-cheese-brain because my once identic memory is worse than amnesia patients at times.  I have cried more in the past seven months than I have in the past 30 years. 

Everyone says "stay positive".  Everyone says "it will work out".  No one says "we understand your pain."  Because no one does.  This disease has wrecked my life in so many ways.  Not just physical but emotional too.  I hurt internally all the time, and it sucks, but not being able to live life the way I was living-not feeling like I'm worth the effort that people have to put up with, the cancelled plans, the waiting on me because walking five steps makes my legs shake and my body hurt, the fact that I can't even enjoy being outside with my family because it literally hurts me.  I feel useless and a bother to everyone.  I know my family loves me and doesn't see me that way, but I can't help feeling that way myself.  I went from someone who ran life at full speed to sitting on the side lines.  Life is literally going on without me and that is the greatest pain I've ever really experienced.

I don't want to seem like all I'm doing is complaining.  Sometimes the only way to survive is to break down and cry, to rant and get it all out.  Unfortunately, when I rant out loud I now can't get the words together so . . .the hour to two hours it has taken me to tap this out has been my way of letting go.  I don't know if anyone is going to read this or care and I'm pretty sure that I don't really care if anyone does.  I just know I needed to put it out there, get it out of me, because sometimes the dark thoughts and depression gets to be too much.  Sometimes I find myself wondering if living with this much pain is worth it.  If I didn't have the people who I lean on, it probably wouldn't be.  

I have a wonderful support system-four parents who fight for me and do everything they can to help me, brothers and sisters who make me laugh and love me no matter how horrible I am, and friends who are willing to put up with the extra things that goes along with me like medicine stupors and changed plans and who share their kiddos with me because kids are still the one thing that brings a smile to my face.  I have a wonderful family doctor who listens to my concerns, helps me with paperwork, and keeps me accountable for myself.  Since I'm waiting on a new neurologist, she is the only medical help I have at the moment and the only one who gets it-this is hard, this is painful, and staying positive is sometimes impossible. 

Life is different, drastically so since this time last year.  I understand so much more about things that were going on with my body that I didn't before-jerking limbs that I put down to general muscle spasms, forgetfulness that I brushed off as "everyone forgets something sometimes" (not with an identic memory.  You don't forget.  Your brain doesn't allow you to forget. Sometimes you really, really wish you could.), mood swings even on medication for mood swings, and this aching, burning feeling 24/7.  None of it is random.  None of it is something I can control.  Its a rollercoaster ride that I can't get out of, but I'm taking it one twist and turn at a time.  The only thing I can do is to hold my breath and wait for the next loop.