Monday, February 8, 2016

What does it feel like to have Meige/Cervical Dystonia? One step forward, three steps back...

Let me describe how my Meige's/Cervical Dystonia feels.

  • You feel like you may have been poisoned and then you feel nauseous and sometimes dizzy. 
  • Then you start to feel panicky because you do not know why this is happening. (Before my Diagnosis) 
  • Your mind is sharp yet you try to control your body movements and it does not work. 
  • The pain is excruciating. 
  • It feels like someone is pulling the back of your head by the hair and your muscles have turned into coiling serpents under your skin. 
  • You feel possessed. 
  • You have anxiety and panic attacks. 
  • For any woman who has given birth and experienced labor... I can equate the feeling of contractions to the dystonic movements as far as having no control over what your body is doing.
  • You scream in your car. You scream at home. 
  • You curse God and you pray to God.
  • You cry A LOT. Anywhere, anytime...
  • You feel like you had 20 margaritas and none of the fun.

The part of the brain that is damaged when you have Meige/Dystonia is the Basal Ganglia and it controls muscle movement and emotions. You isolate yourself and lose many friends because you are in such a state of pain that is all-consuming. You also find out who your true friends are. You want to crawl under a rock and die. I read an article that a woman with CD said "Dystonia does not kill you, but you wish it would."

I'm not telling you this because I want your pity. I'm telling you this because these are the facts. Take a step back and be thankful and grateful for everyday that you have good health on this earth. 

I am grateful for every day that I make progress and terrified on days that I feel like I'm not. I am thankful for my husband for sticking with me and telling me I'm beautiful at my worst...and my children who keep me going every day. I am thankful to have such an amazing team of doctors helping me.

One step forward, three steps back...I am walking when others cannot and I am thankful.