Friday, March 22, 2013

Chronic Fatigue Syndrome

(As posted on Facebook)

4 years ago, I went to the doctor for unexplained chronic fatigue symptoms.  After dozens of negative tests and confirmation of hypersomnia through sleep latency tests we have yet to know the cause of my fatigue.  The best diagnosis that fits me is "Chronic Fatigue Syndrome."  I have been officially disabled for the last two years.  I am thankful to have had doctors, family, friends and even insurance representatives who have never questioned that my symptoms are real.  I am grateful to my graduate adviser who let me work reduced hours mostly from home to complete my PhD rather than taking a medical leave of absence.  

What is living with CFS like?  I wake up every morning feeling like I just completed a very long day at work and am so mentally exhausted that I cannot think.  I get easily overwhelmed by simple tasks and decision making.  I have always been somewhat scatterbrained, but now it is much worse.  My fear of melting down/collapsing in public keeps me from attending certain events.  Slowly, I am getting better at compensating for my deficiencies (thanks again to the help and understanding of friends and family.)  After 4 years, I still feel like if I just have a good week of rest I will feel better, but that rested feeling has yet to come.  

I say this today because many people who look at me cannot tell I am sick.  They still see the bubbly energetic girl I used to be.  She is still inside of me, but I am just not able to let her out to play as often as I would like.  It pains me that some people judge me as too lazy to get a job or content to live off of my husband.  It pains me that I have had let go of certain dreams.  However, despite the limitations of my disease, I am happy.  I have new goals and dreams that work within the framework of my fatigue.  These last 4 years have been some of the best of my whole life, and I wouldn't trade them for anything.  

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