15 Things I Want You to Know About My Crazy, Wonderful Dystonia Life

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listicle

I have early onset cervical dystonia.

CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse as the years go on. There is no cure for dystonia.

12 Reasons why CD sucks:

  1. For me, dystonia results in constant pain, pain and more pain, chronic dizziness, and occasional migraines.
  2. Valium. Oh, valium. I have a love/hate relationship with my valium. Unfortunately, it has to be my very best friend. I wish I could get a new best friend.
  3. My neurologist says I have 12 good years left. (Seriously?!?) I told him he is dead wrong.  Period.
  4. I hate cold. Cold for me = pain and dizziness.
  5. I say the wrong words ALL the time. Probably over 50 times in any given day. My 4th-grade students find it hilarious. The people closest to me are used to it and correct me. It is one of the most infuriating parts of this disease. Strangers probably think I am drunk.
  6. My head tilts, but not a lot. Stress makes it worse.  It drives my husband crazy and he is constantly moving it back to “normal”.  He doesn’t understand that  “normal”  feels so unnatural for me, my head might as well be touching my shoulder.
  7. My body is covered in bruises from head to toe. I spend a lot of time running into things.
  8.  I desperately wish my dystonia didn’t affect my children or my husband. I feel like a burden.
  9. The only course of treatment left for me at this point is Botox injections in my neck. I am stubborn enough to never allow that in my body.
  10. I am paranoid that anything new happening to my body means my dystonia is worsening.  When my right eye started twitching, Google told me I had blepharospasm dystonia.  Or I was dying of cancer.  Either way, Google is not my friend.
  11. For whatever reason noise angers my dystonia. It makes my shoulders tighten.  I couldn’t go to the movies or restaurants for over 2 years.  Then I discovered these things called earplugs. Genius. I never leave home without them.
  12. I had a pity party for myself when my symptoms were at their worst and my neurologist couldn’t figure out what was wrong with me.  It kind of lasted for years.

heartBUT…There are also good things that have happened since onset. 3 incredibly wonderful things actually.

 

  1. Through years of closely tracking my episodes and learning my triggers, I have completely changed how I do all of my day-to-day activities. This has allowed for my episodes to decrease drastically. I am currently the best I have been since my original onset of symptoms.   I  know that it won’t last forever but I will ride it for as long as I can!
  2. I really don’t want pity.  People think they shouldn’t complain around me because of “everything I go through.”  I don’t want people to think that way. Throughout this journey, I have realized that there are many people I know and love who live with some sort of pain or suffering each and every day. Most of them are not nearly as verbal about it as I have become. My heart goes out to each one of them. Even if it’s a sinus infection, don’t play it down.  Sinus infections suck.
  3.  Every day I thank God for my life. It wasn’t the journey I had planned, but I am so very richly blessed in ways too numerous to count.
Like my listicle? Click here to read a little bit about my journey to diagnosis and inner battle to not be a victim to disease: My Least Favorite Sentence. 


amber PW contributor About the Author:

Amber is a 39-year-old wife, a mother of two girls, a full-time elementary school teacher, an advocate, and a fighter. Living with celiac disease, vestibular neuritis, and cervical dystonia, Amber lives every day managing pain mixed with episodes of chronic dizziness. All 3 of these diagnoses occurred within the last 10 years. Amber says, “My life has become an insane, often times agonizing, yet amazing journey with blessing too numerous to count. And I love it!”

 


Comments

comments

2 COMMENTS

  1. Dear Amber,

    I can relate to many items on your “listicle”. It brought laughter to my day! I was diagnosed with Generalized Dystonia a few years ago. I just want to thank you for sharing part your story with us! Thank you for your honesty. Thank you for your refreshing take on Dystonia… and sinus infections!

    Sincerely,

    Nolan (@nolbeerunner)

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