I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Saturday, November 10, 2012

The realities hit hard

1. "You are so lucky that you don't have to worry about gaining weight. I would love to not have to watch what I eat. You can have some of my fat!"

Reality: My body doesn't properly absorb what I take in so I am forced to take pills every time before I eat...even if it's just a small snack. My body is constantly starved from proper nutrients which results in low vitamin levels, being constantly fatigued, having dark circles under my eyes, osteoporosis, irregular menstrual cycles and the list goes on. A vast majority of CFer's rely on calorie-enriched tube feeding supplements at night just to help maintain what they have.

2. "But you don't look sick..."

Reality: I may look healthy on the outside, but the inside is a completely different story. On the outside you'll see that I am able to withhold a sense of normalcy (what is normal anyway?). Aside from being a bit shorter, I don't exhibit many traits of this illness. I am able to laugh, smile, talk, walk, and pretend that everything is okay. Now, the inside...a completely different story. You'd see mucus, scarred filled lungs that are functioning at 35%, on a good day. The "simple" breathe in, breathe out rhythm that many people take for granted, is something that isn't so simple to me and it's something that I continuously crave an easy day of. You would see that after each laugh, I am trying for several minutes to catch my breath again. There are constant pains shooting through my so-called lungs. Multiple nights are filled with endless bouts of cough attacks that leave my body feeling like bruised lead for the next couple of days following.

3. "I know how you feel...I had pneumonia for like a week and it sucked."

Reality: The last time I caught pneumonia, my lung functions literally dropped from 37% to 18% in less than a week. I was not able to shower, sit up, or even laugh without having to catch my breath for 10 minutes afterwards. The walk to the bathroom alone left me in tears as I fought for each step. My lower lobe of my right lung collapsed and I spent a week recovering with vigorous,  extensive treatments and physical therapy. I relied on oxygen just to help with even the little things for an extended period of time. My lungs now have more permanent damage...as if I didn't have enough. Also, your bout of pneumonia is gone. My illness is not...how you felt that week, is how I feel everyday and that can not be understood in a week.

4. "I hate school. I wish I could stay home as much as you do"

Reality: You have NO idea how much I would love to be able to worry about the more simple things such as homework, the crappy lunch choices, being bored in class, and having my least favorite teacher. Chances are, I have stayed home because my body just couldn't handle the 4:30 AM mornings to fit in my treatments, let alone the 8 hour school day. My extended absences are spent in the hospital and being confined to home IV therapies and breathing treatments. My days spent at home from school aren't filled with lounging on the couch, eating food all day and catching up on my missed episodes. Instead, I am focused on making sure that I take all of my medications and do all of my treatments, all while trying to keep my fever down and wanting so badly to sleep, but not having the ability because of the latest chest pain and/or the constant cough.

5. "Maybe you should try sleeping more so you won't be so tired."

Reality: There are nights where I literally can't catch more than 2 hours of sleep because of the coughing that itches the back of my throat and to no avail, will calm down. Sometimes there are pains so intense that I am woken up in a deep sleep and am no longer able to fall back into it. I can sometimes sleep for 12 hours straight, but my body craves even more of it, so even then, I am still fatigued. My body is constantly undergoing the fight just to breathe and that alone is exhausting in itself. My poor lungs are working so so hard at times, that all I can do is focus all of my energy on just breathing.

6. "Don't worry, you'll get better and become even healthier in no time, trust me..."

Reality: I have doctors, scientists, medications, treatments, and I have my will to fight. But then again, I have infections, scarring, resistance to antibiotics, and lowered baselines. I am not capable of reversing any damage that has been done over the years. I undergo countless hours of inhaled medications and airway clearance systems on a daily basis, but that sometimes isn't enough. My body can't magically repair itself. I am fighting against this disease and this disease is fighting against me. We are both losers and winners in this battle.

7. "All you have to do is stay positive."

Reality: ...Let me just say this: Are you able to stay positive on a day-to-day basis? Life is challenging enough and when you throw in a teenage girl dealing with a chronic disease, it's not possible to remain positive constantly. Everyone has their break-downs and if you tell anyone that you don't, you're lying. It's okay to not be bright, uplifting, and strong all the time. Our downfalls help us become stronger. And trust me, I am able to find a silver-lining in every rough situation. I have broken down many times, but no matter what, I still keep going.

1 comment:

  1. This is great. Poeple think they know what they are talking about, but in relaity their not the one with the disease. Love you Alex and enjoyed reading this.