Monday, May 2, 2011

Beware/Be Aware.

I don't look sick. Often, I don't act it either. "I'm okay" or "I'm fine" are common responses of mine. It's easier for me to block out what I can of this disease than to focus on what's wrong with me. That's why it's also so hard for to write this post describing M.E. Everyone has a struggle they are forced to deal with everyday, mine just happens to be in the form of a mysterious disease. I never forget that it could be worse. I  try to forget how I used to feel and function, and I try not to obsess over the future. I'm forced to focus on now because I don't know what's going to happen tomorrow.
Most of what I'm going to try and explain is information I've easily accessed on the internet. Most of my doctors have been clueless with what to do with me or tell me. To these doctors, I'm just a case study. That has been one of the most frustrating parts of this journey. I've been written off, traded around, misdiagnosed and pushed aside more than any patient should be in the past few months. I'm so thankful my parents have done all the research they can to get some answers. It's easy to blindly trust someone such as a doctor, but I've learned that doctors are still human. Humans still make mistakes. The only trust is in my faith and in our healing Lord. I am not only a patient, but an advocate of my own health. It's a struggle to not become angry and bitter... I often wonder how some of these ignorant and closed minded idiots got through medical school! But pessimism towards doctors is pointless. M.E. is just now coming to the attention of medicine. I'm hopeful that it will become more understood. Just recently NIH (National Institutes of Health) did a 2-day seminar on M.E.! Coming up on May 11th, there will even be a day for lobbying in Washington D.C. for funding. It's exciting to know some progress is being made! I hope to someday help develop a cure, too.
There are many names for this. The most common is Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Although, the connotation with CFS is horrible. It's a lot more than just fatigue. It's often compared that this illness to fatigue is like what a match is to an atomic bomb! I've also found that while researching online, searching "CFS" does not go into as much depth as "M.E." information does. I've found that has a great deal of accurate information.
It seems that this disease has an endless and changing list of symptoms and side effects... I'm still very early in the stages of M.E. It's very complex and there are many factors and variables that come with each patient. It affects EVERY system in the body. It's brain damage. There is a malfunction in my DNA that welcomes the disease to take over. No one likes to feel sick, even with the basic flu. I feel sick everyday. It's a lot more than just daily pain and discomfort. When I wake up, I have to make the decision to push through this. At first, I would cry myself to sleep (if I could sleep at all), and cry myself awake every morning. I've come very far already to even talk about this openly, but it still scares me. I refuse to accept defeat, but I try to be realistic. I never know what's going to happen next. I have okay days and bad days. I have good moments when I'm surrounded by those I love. This disease can potentially take everything away from me- including my life.  They don't know how you get it, or how to treat it. It will never go away. They do know it's genetic. So, my children, if I can even have them, might get sick. My brother and sister are at a greater risk, too. Remember what I said about not obsessing over the future? That's a tough one.


  1. Sara,

    I am so glad to hear about the lobbying for funding--did you hear anything about the 2-day seminar and if there are any leading doctors or studies being done?

  2. There was actually a lot of research brought to the workshop.. including some studies from Ohio State! They recorded the entire thing, but I'm only a few hours in. The purpose of the workshop was to start a universal action-plan of sorts. They were also trying to figure out what works and what doesn't work with treating the symptoms. They have to approach ME/CFS with reverse translational research. This means they have to look at the symptoms of the disease and make hypotheses to figure out the problematic source at a cellular level. There is so little we know about our bodies still, but hopefully a cure, and not just treatment for the symptoms, will be something I see in my lifetime!

  3. You are the most amazing person I've ever met my whole entire life. Like absolutely remarkable. Words cannot describe how incredibly awesome you are.

  4. I really am sooo beyond flattered. :) i just work with what I'm given. I love you, Sarah!