The thing about this disease, this wretched f'ing disease is that it breaks you down. It crushes you under the weight of yourself. It wears you out. You are trapt within the confines of a prison, a war camp. The problem being that your own flesh and blood, your bone and nerves are the walls and barbed wire fencing you in. There need be no guard with a gun or a steely eyed monster at the gate, you are suffocating under the weight of yourself. You can never escape it. You crumble under the walls of yourself.
I sometimes question if it is worse that I was an athlete and know how much I'm missing and how good I had it. Or if it was such a joy and a gift and a blessing for the time that I did have. Regardless, it's all fairy dust and smoke and mirrors now. Some people are still confused when they see me that I don't skate "not even at all". It's funny. When I do venture outside the confines of my home base, on my good days, I always run into people. I always wish that I didn't.
The disease tears you down from the inside. I'm like a house that looks pretty from the outside. You see it. It may have a pretty paint color, cheerful flowers, things might look nice on the outside. Be forewarned. Don't go in that house. You could lose your life. The foundation is crumbling. The walls are sagging, the floors are slanting and the roof could give way at any moment. Yet, you wouldn't know it to look at the home. You'd only find out when it's too late.
I'm scattered right now. My mind is whirling and twirling fast and slow. I'm not finding the words that I want. It drives me mad. I hate that I sit and my fingers linger over the keys, while my mind chases down the path, like a toddler fumbling after a butterfly, both hopelessly slow and behind the pace needed to get what is wanted. I'm exhausted. I'm not sleeping. I have taken all of the clocks out of my bedroom. I try to watch a movie, watch a british murder mystery, focus on anything to keep my mind off the pain - and yet I know that the clock keeps ticking. I'm exhausted, and I can't sleep. So I slowly swing my feet over the side of the bed, pad to the bathroom, pad to my childs room to stare at that angelic face rhythmically breathing in and out so peacefully, shuffle slowly back to bed and try once again to find the sleep that eludes me. I've enough meds in me to knock an elephant out at 100 yards, and yet, I can't fall asleep. The windows start to stain with color and I realize that I've lost another night to this disease. I look at the clock on my phone and realize that it's after 5AM and I should have been asleep hours ago.
My husband and I fight. I feel like I fail him. That my failing body is failing him. Failing our family. That it's making things too hard on us. I'm bankrupting us with my medical bills and treatments that aren't even making me have quality of life. And I'm angry and sad. I have love and peace at times i the day with my daughter, but I'm struggling with being wiped out, tired, overwhelmed and so many things. And these are things that are pushing us apart. He wants to fix me. He doesn't feel like I'm grateful. He doesn't think I'm trying. He doesn't understand that I am. He doesn't understand that my fingers are bloodied and my nails are ripped off from clinging on. He doesn't seem to realize that I am hanging on my a thread. That I love my family so much that I am hanging on for them. But it's hard. That I am absolutely shattered by the guilt of this thing because I don't want to be this girl. I don't want to feel so broken. But it's like a tree wishing to be anything other than a tree. It's my lot in life now. I just have to figure out how to make it better. Or how to cope with it better. Or how to walk into the ocean. But I know that we can't keep fighting. That he can't fix me. And I can't fight him or be angry at him because, well, because I feel invisible.
Next week the doctors are going to try an experimental surgery to take a crack at trying a repair to re-route some of my brain signals. To help curb some of what is jumping from my brain, down my spine and into my legs. It's all just a "let's see what happens" type of thing. My doctor is very much "we'll fix you" or hopefully it will. It's a bit conveyor belt-ish feeling. I don't know. I'm feeling uncertain right now. I'm in so much pain. I'm exhausted. I'm feeling alone. And I'm feeling like the girl that needs to go in for more repairs. Sometimes I miss my old friends, miss having a life and friends and a social life. But really, I just miss being free. Not thinking so much about this. Maybe with enough of this writing, enough of stammering these things out of my head and onto this blinking cursor - it will let me rest. Maybe not sleep, but at least have a more restful mind while I'm lying alone in the dark.
Maybe it's just down to me to fix me.
I sometimes question if it is worse that I was an athlete and know how much I'm missing and how good I had it. Or if it was such a joy and a gift and a blessing for the time that I did have. Regardless, it's all fairy dust and smoke and mirrors now. Some people are still confused when they see me that I don't skate "not even at all". It's funny. When I do venture outside the confines of my home base, on my good days, I always run into people. I always wish that I didn't.
The disease tears you down from the inside. I'm like a house that looks pretty from the outside. You see it. It may have a pretty paint color, cheerful flowers, things might look nice on the outside. Be forewarned. Don't go in that house. You could lose your life. The foundation is crumbling. The walls are sagging, the floors are slanting and the roof could give way at any moment. Yet, you wouldn't know it to look at the home. You'd only find out when it's too late.
I'm scattered right now. My mind is whirling and twirling fast and slow. I'm not finding the words that I want. It drives me mad. I hate that I sit and my fingers linger over the keys, while my mind chases down the path, like a toddler fumbling after a butterfly, both hopelessly slow and behind the pace needed to get what is wanted. I'm exhausted. I'm not sleeping. I have taken all of the clocks out of my bedroom. I try to watch a movie, watch a british murder mystery, focus on anything to keep my mind off the pain - and yet I know that the clock keeps ticking. I'm exhausted, and I can't sleep. So I slowly swing my feet over the side of the bed, pad to the bathroom, pad to my childs room to stare at that angelic face rhythmically breathing in and out so peacefully, shuffle slowly back to bed and try once again to find the sleep that eludes me. I've enough meds in me to knock an elephant out at 100 yards, and yet, I can't fall asleep. The windows start to stain with color and I realize that I've lost another night to this disease. I look at the clock on my phone and realize that it's after 5AM and I should have been asleep hours ago.
My husband and I fight. I feel like I fail him. That my failing body is failing him. Failing our family. That it's making things too hard on us. I'm bankrupting us with my medical bills and treatments that aren't even making me have quality of life. And I'm angry and sad. I have love and peace at times i the day with my daughter, but I'm struggling with being wiped out, tired, overwhelmed and so many things. And these are things that are pushing us apart. He wants to fix me. He doesn't feel like I'm grateful. He doesn't think I'm trying. He doesn't understand that I am. He doesn't understand that my fingers are bloodied and my nails are ripped off from clinging on. He doesn't seem to realize that I am hanging on my a thread. That I love my family so much that I am hanging on for them. But it's hard. That I am absolutely shattered by the guilt of this thing because I don't want to be this girl. I don't want to feel so broken. But it's like a tree wishing to be anything other than a tree. It's my lot in life now. I just have to figure out how to make it better. Or how to cope with it better. Or how to walk into the ocean. But I know that we can't keep fighting. That he can't fix me. And I can't fight him or be angry at him because, well, because I feel invisible.
Next week the doctors are going to try an experimental surgery to take a crack at trying a repair to re-route some of my brain signals. To help curb some of what is jumping from my brain, down my spine and into my legs. It's all just a "let's see what happens" type of thing. My doctor is very much "we'll fix you" or hopefully it will. It's a bit conveyor belt-ish feeling. I don't know. I'm feeling uncertain right now. I'm in so much pain. I'm exhausted. I'm feeling alone. And I'm feeling like the girl that needs to go in for more repairs. Sometimes I miss my old friends, miss having a life and friends and a social life. But really, I just miss being free. Not thinking so much about this. Maybe with enough of this writing, enough of stammering these things out of my head and onto this blinking cursor - it will let me rest. Maybe not sleep, but at least have a more restful mind while I'm lying alone in the dark.
Maybe it's just down to me to fix me.
When you try your best but you don't succeed
When you get what you want but no what you need
When you feel so tired but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
When you love someone but it goes to waste
Could it be worse?
Lights will guide you home
And ignite in your bones
And I will try to fix you
Coldplay - Fix You
