The reality of chronic illness

Yesterday’s (because I’m no longer awesomely on top of things thanks to procrastination, Thanksgiving) Wego health post: How have your goals as a patient / advocate / person evolved? 


When I first started to get sick my major goal was to get better, but I quickly found out that I had a bigger problem, I need to find out what was wrong with me first. I spent a year and a half trying to find out what was wrong with me. I no longer cared about getting better,  I didn’t even care if it was a horrible diagnoses, I just wanted to know so I could start dealing with it.
Eventually I was diagnosed with Fibromyalgia. I didn’t accept the diagnoses, so I kept focusing on finding out what was really wrong with me. I went to a doctor who treats fibro/CFS and she diagnosed me with fibro/CFS and Lyme disease. I couldn’t believe I had a diagnosis like Lyme disease, I was so thrilled. My goals had been met! I had an official diagnoses and everyone knows that Lyme is easily cured, right? Haha (universe laughing at my naivety ) WRONG.
I thought that all my problems would be over if I just knew what was wrong with me, my goal (again) was to be cured.  Unfortunately,  when I started  the Lyme disease treatment I quickly learned it wouldn’t be that easy. I thought I could take antibiotics for a few months and everything would be better. Fibro- gone, Lyme- gone, CFS-gone. After six months of treatment, my goal of getting back to normal was thrown in the trash.
I am now 1 year into my Lyme treatment. My new goal is to accept the way things are and to enjoy life without constantly waiting for the moment that I will feel completely better. I have accepted the fact that I will never be better. My goal is to kill all the Lyme bacteria and then get on with my life and learn how to deal with the permanent side effects of the years of untreated Lyme (fibro and CFS if you haven’t read my blog before).
My goal today and everyday is to live my life the best I can, to have fun and to experience joy, whether my health is where I want it to be or not.



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