Don't follow

Sometimes I feel like I've gone down the rabbit hole.  I'm in the hellish underworld and I just wish I knew when I lost my footing.  Well, I take that back.  I know exactly when I lost my footing, I can pinpoint it, and I can still close my eyes and remember the sounds and the feel as my world got flipped the wrong way forever, when my axis got thrown off, when my world started to spin the wrong direction.  I just didn't know it at the time.  I had taken really bad falls before.  I had even had surgery before.  I was no stranger to intense pain, to physical therapy - I had gone through it all.  I was expecting to put in the hard work and to have what always happens, to come out stronger and to be back to my old self again.  Only, I lost myself that day.  While the RSD did not truly get its hooks into me at that moment, it was the surgery to try to correct some of the damage that left me in a waking nightmare, a hell I wasn't able to wake up from.

Thinking back on it.  I know the only way I could have truly done something differently would have been if I had never skated in the first place.  If I had been in another sport, if I had a different passion, then maybe I could have avoided this.  Otherwise, this was a collision with fate that was always going to happen.  It wasn't a lapse in judgement.  It wasn't something stupid that I regret doing.  It wasn't a foolish antic that I can chalk up to being a kid.  I was an athlete training to be better - and I'm paying for it for the rest of my living days.

Sometimes I hate that I have such a high pain tolerance to this day.  I am screaming on the inside.  I am in pain that is making me feel like my heart is going to explode because it starts to race so hard from the pain.  I feel like a race horse that doesn't know how to stop running.  I push myself to keep moving, keep walking, keep going...  I'm scared that if I do not, I will lose it.  I will lose my walking, my independence, my last little bit of self.  I'll slip further along into the blanket of this disease.  I'll give in and give over to it.  I fear most that damn wheelchair.  Scared that I'll become useless and sit dusty in a  corner.  Relegated and forgotten...like a toy that was once shiny, new and wonderful; that is now older, not as interesting and a little bit sad.

It grieves me that with a beautiful baby girl that I adore so much, that the moon and the stars are hung on, that the sun rises on, that I am unable to write a happier post.  I want so badly to be able to gloss over this pain.  I want so badly for it to not be taking over my life.  She is the solace in all the pain.  She is the only thing that keeps me going.  She is what keeps me tethered to the earth.  When I feel myself and my soul pulling away from the earth, wanting to wrench free from this earthly world; hearing the whispers of whats better, she is what keeps my feet planted firmly on the ground.  She is what keeps me nearby.  She is what keeps me from doing stupid and irreversible things.

Hey, I'll just wander my

Own road now

Hey, I can't meet you here tomorrow

Say goodbye don't follow

 Misery so hollow

....

I get so lost and don't 

Know how

And it hurts to care, so I won't now

-Alice in Chains "Don't Follow"

Sweet Disposition

It's funny how some things never change....

I still find hope and strength from the same sources now that I did as a little girl.  Music will set me up to be stronger and bouncing with strength (or weeping and emotional if I make the wrong music selections!).  As I sit gently rocking in my chair, contemplating my upcoming trip to the Cleveland Clinic and what I hope to accomplish while out there, I play my "hopeful" mix on my iTunes account.  One song in particular by The Temper Trap always gets me in a great mood "Sweet Disposition" always makes me feel happy.  It has a happy little beat, the lyrics are enough to make me move and groove "a dream, a laugh, a kiss, a cry....won't stop 'til it's over - til we surrender".  I like that song.  It makes me want to go wake up my husband, give him a big smooch and tell him to throw a bag together, that we're packing up, hitting the road, loading up the dogs, I've got the baby and we're taking off.

I've got a major case of wander lust right now.  I think it has to do with how awful I feel right now.  When my body feels so wrong.  When I hurt so badly - I just want to leave, to get out- to go somewhere else.  I don't want to be here.  I want to hit the reset button.  I want to get out of this town and see if I can find a place that makes me feel better.  That helps soothe me and makes me feel less pain.  When every day becomes hellish and every night becomes a nightmare, well, who wouldn't want to see what else is out there?

Maybe I'm mixing up RSD with a war...it's like an invading army and I'm just trying to get out of the way, trying to run to safety.  Looking to find refuge.  Unfortunately there is no safe zone for me.  This is going to hunt me down no matter where I go.  It's going to follow me and track me....I'm going to fight it though.  And I've got my husband and he's determined, even more than me at this point in my life, that we'll beat this.  He had more fight in him for this now.  He's ready to do battle.  I'm too wounded right now to feel like I can fight.  Luckily he's strong enough that he's ready to carry me.

When I was a little girl I believed in princes and heros and knights in shining armor.  While my husband doesn't ride a giant black horse, nor does he have a shiny crown - he does save me.  When I risk falling into the pit that is RSD, risk letting myself give into the pain - he pulls me away from the edge, he is strong enough to put me over his shoulder and carry me out of the battlefield.  He is strong enough to remind me that this pain isn't forever.  That there will be relief and freedom.  That I can handle this.  That I am stronger than this.  That we can figure this out.  While I do not feel stronger than this now.  While I am not so sure that I can beat this right now, I believe in him, that we can find a way to at least make it better.  So, in a way, my Prince Charming is here, to save me.  It may not be the way 5 year-old me thought it would happen, but that's ok.  There is always room for a re-write.

Sweet disposition

Never too soon

Ohh reckless abandon

Like no ones

Watching you

A moment, a love, a dream, a life

A kiss, a cry, our rights, our wrongs,

So stay there

Cause I'll be coming over

Sweet Disposition - Temper Trap

Someone like you....

I look at photos...I see that girl - and I know she's me.  I used to be that girl.  I used to be strong.  I used to be athletic.  I used to not lay awake all night in pain.  I used to not flinch at the thought of a hug.   The thought of a trip to the grocery store didn't seem like a marathon.  I have nightmares that make me want to stay awake...like a night watchman, waiting out for dawn so that the grips of those hellish dreams don't pull me in.  The squealing car brakes, the whoosh of the air and impact is all to real.  The heat radiating as impact is made and I feel my body being cut in half as steel hits me and I'm severed - my legs ripped free from the rest of my body.  I always wake up the same- choking down a scream, sheets bunched up in hands, sideways on the bed, Emma resting her head on the bed next to mine nuzzling me, letting me know that it's ok, I'm back here, I've landed safely, to breathe again.  But the pain hasn't stopped.  It hasn't gone away.  It still feels like some great metal beast is ripping me apart.  My legs still feel like they are on fire, lit up with gasoline and burning so intense.  I can't stop moving them, the muscle tingle and burn and won't stay still.  I climb back out of bed and into the safety of my glider, open up my computer and hunt down the safety of music, maybe an article, anything to pull me outside of myself.

Trying to live a life during the waking hours is growing harder and harder.  My little girls smile is the only thing that keeps me going.  It's what pushes me to keep moving, to keep going...  Without her, I would not get out of bed.  I don't think I would have made it past January.  It's amazing how far and hard and long I've been able to push this body.  It's screaming and protesting and I just want to rest.  I just want to lay down.  I just want to stop.  I want to freeze time.  But that's not how it works.  It's a treadmill.  You've got to keep running.  You've got to keep producing.  and I'm trying to keep up.  I just wish I didn't feel as though I was standing on the edge of a cliff, balancing but so close toppling over the ledge, down, down, down - arms and legs flailing.

I hate that I feel like I can't tell people how I feel.  The people closest to me it hurts them too much to know how bad off I am.  They can't do anything to help me.  They can't make the pain better.  They can't ease it, they can't shoulder it for me...and unfortunately they can't change the situation to make it any easier on me than it is - so I try to keep it to myself.  And most others are just ignorant, so I just let it go.  I keep it to myself and I just try to shoulder it all.  I try to stay happy around my baby girl- she doesn't need to know about pain and hurt at this age.  So, I let the tears and the pain and the upset out here...and on my message board...and I listen to music and I try to think things over in my head....let them turn over until I think that I can make sense of things....and try to make as much peace with things as possible.

I miss me.  I miss life being a little easier to enjoy.  I adore my baby...I just...wish I wasn't in so much overwhelming pain.  It's the type of pain that threatens to just suck your soul dry.  You try to keep feeding your soul because the pain is so draining - so I drink in my little girls smiles, giggles and snuggles.  I nuzzle my dogs and gaze at the sunshine on our backyard.  I gaze at my husband and think of what a wonder husband and father he is.  I try to really stop and be grateful for each of my blessings..because the rest of the time I'm getting drained and my soul is just emptying so fast -that it would be too easy to give in otherwise.  It would be to easy to turn over to the pain, to give into it.  To I've got to try to stay ahead of it.  To stay on top of it.

I only need

The compass that you gave me

to guide me on

And it's beginning to get to me

That I know more of the stars and the sea

Than I do of what's in your head

~It's beginning to get to me Snow Patrol