Guillain-Barre Syndrome – The Four Year Anniversary

I remember it like it was yesterday – the day my life was changed.  I woke up in so much pain that I couldn’t stand up straight.  As I shuffled toward the bathroom like I just spent a day at the gym, my wife said those famous words.  “If it’s that bad, maybe you should call the doctor.”  Those were followed up by my infinitely more famous words. “Nah! I’ll be fine.”

The next thing I knew I was waking up on the hall floor with my wife on a frantic 911 call.  Maybe I wasn’t going to be fine after all.

When the dust settled, I had somehow contracted a rare neurological auto-immune deficiency called Guillain-Barre Syndrome. (When I say rare, I am one in 200,000. Beat that!) I was very fortunate to have spent a mere four days in the hospital with my only impairment being the loss of my fine motor use in my fingers.  (Extreme cases of GBS include the need of a pacemaker and/or respirator and one-year hospital stay.) Fortunately, GBS is a self-healing disease.  You let it run its course, and you eventually get better (or a version of better).

GBS knocked me for a tizzy for a year. I spent an entire summer on my back and couldn’t care for my daughter alone. I had random feelings of weakness, pain, numbness, and tingling in all my extremities, but especially on my left side.  My energy level and endurance were reduced to nearly zero.  And I had a mild case!

Today marks four years since that fateful day, and I can honestly say that GBS changed me.  My endurance level is not what it was. I still have weakness in my left arm and I still get numb and tingling feelings in my fingers at times. I’m fairly certain I’ve become more introverted. My principal even found a new job for me when it was obvious I wasn’t able to teach 5th and 6th graders all day anymore. And, let’s be honest. My chopstick skills are horrible!

This probably doesn’t fit the nature of my Daddy Blog, but GBS is a part of who I am, even though it’s my greatest nemesis.  I felt the need to commemorate it on this four-year anniversary.

And I’m so glad I don’t need to see this hospital room ever again!

hospital

Pro Tips:

  • Don’t get a flu shot. I’m sure that’s a controversial one, but let’s put it this way.  When the doctor diagnosed me, these were the words he used, “You have Guillain-Barre Syndrome. Did you get a flu shot?” Nope. Never have and never will.  Thank you.  No one knows how I got GBS, but I’m not inclined to play the odds.
  • WebMD is not your friend when you have a rare disease. The words “rare and potentially fatal” are not ones you or your wife should be reading at this time.
  • Find a friend who’s been there.  The GBS community is small, but technology has brought us together. It can be a bit scary as everyone shares their experiences and you see what life could be like till the end of time.  I did find one online friend who encouraged me to look past the negativity.  She is now a triathlete and one of my heroes.
  • Surround yourself with a great network. I could not have survived GBS without my wonderful wife. She held our family together, playing the role of mother and father for months.  We could have not survived with excellent friends, some we didn’t know were our friends at the time. Meals, free babysitting, and free grass cutting were such blessings!
  • Be the network for others.  Sometimes I need to remind myself of this one.  Help others in need.
  • Get disability insurance. Fortunately, I was sick for the entire summer and somehow missed very little school. I found out after the ordeal that I didn’t have disability insurance. That’s been rectified. Whew! I also am wishing I hadn’t allowed my Aflac to lapse when I changed jobs.

Thanks for listening.  Sorry it wasn’t funny.  If you want to read more, here is my original story.

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4 thoughts on “Guillain-Barre Syndrome – The Four Year Anniversary

  1. Cathy says:

    I’m in tears reading your blog. We too just past our 4 year mark on May 26 however it wasn’t me at the time it was my 4 year old son. He is now 8 diagnosed 10 months later with partial complex epilepsy and has behavioral issues. My husband left us 18 months after diagnosis it was too much for him. My son is doing remarkable however still has some weaknesses. People don’t understand it will be a part of him forever. Thank you for your post. You are blessed with your support system.

    Like

    • I’m so sorry, Cathy. My daughter was three when I got GBS, and I can’t imagine a little one going through that. She got the flu shot a couple times after my diagnosis, and each time I cringed. In a way, it must be harder watching someone you love endure GBS than actually doing so yourself. I’m glad your son is doing better.

      Like

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