A Dystonia Love Story - In honor of Rare Disease Day

 
February 29th is Rare Disease Day. In honor of this, we went out to the dystonia community to ask for stories that demonstrate the special relationships that are formed through having a rare disease. We are thrilled to share this story from Amber. If you have a story to share, please email us at: info@dystoniacanada.org. 
 

My name is Amber Furr.  I am a teacher, mother, wife, advocate and daily conqueror of Celiac disease, Vestibular Neuritis and Cervical Dystonia. This is my story about why my Bipolar husband turned out to be the best thing for my Cervical Dystonia.

I love my husband. He is, and will always be, my best friend. When we stood before God and our family to exchange vows, we made a commitment that it would be for better or for worse. Wow, what a rollercoaster of a ride our last 12 years together has been!

My husband has always been high energy. I love that about him. It also drives me crazy! Our friends joke that his internal switch is always set to “on”. After the birth of our first daughter, he became out of control. He moved constantly during the day and then only slept a few hours at night. He couldn’t remember to do half of the things I asked him to do. He didn’t see severity in situations, like when we thought he might lose his job. Yet, he would become obsessive over little things such as triple sterilizing baby bottles. At the same time, I was dealing with my own health issues. About a year after the birth of our second daughter, I was referred to a neurologist for chronic pain and dizziness.  

There came a point when I told my husband I couldn’t live like this anymore. He scheduled an appointment with a psychiatrist. I expected a diagnosis of ADD. What I didn’t expect was a Bipolar diagnosis. My husband was diagnosed with Bipolar Disorder Not Otherwise Specified. For him, this means he is pretty much hypomanic all the time. He was put on mood stabilizers and started therapy.

Then, my neurologist dropped a bomb on us when I was officially diagnosed with Cervical Dystonia in 2009. Being the extremely stubborn person I am, I knew one thing for sure: Dystonia would NOT change my life. I had two small children. I was working full time as an elementary school teacher. My husband and I were rebuilding our marriage. Nothing would change. Except that it did. Everything changed for me. My symptoms overtook my life. My body hurt all the time. Every day began with pain and fatigue. I dealt with bouts of dizziness that lasted for months on end. My brain wouldn’t remember words. A new medication was added. Then another. Then another.  I started seeing a physical therapist weekly. A deep depression overtook me. We looked at the possibility that I might need to quit my teaching job.

But I am oh so stubborn.

I was not willing to quit my job, but I couldn’t continue my life like this.  Which meant one thing; I had to figure out how to live my life with Dystonia. My husband and I became proactive. We began to track my episodes and find patterns that made my Dystonia worse: weather, stress, hormones, and most of all movements. We diligently tracked daily for over a year, and my husband was by my side every day. Finally, we made the only decision that made sense for our family, we changed everything about how we lived our day-to-day life. And, thank God for my husband!  My Bipolar, hypomanic husband, who was always on, took all his energy and put it to work for both of us:  He learned how to massage me. I have my own massage therapist!  He gets the children up and ready for school every day.  He does homework, he cooks meals.   He continuously runs up and down the stairs to get the laundry list of items my Dystonia brain has forgotten.   He spends, what probably amounts to hours yearly, picking up everything that falls out of my hands.  

He always makes sure I have a heated tube around my neck.  He hugs me when I cry and convinces me we can do this. 

 What’s the best thing he does for me? He stops me when I can’t stop myself. He takes knives out of my hands when I am chopping up vegetables because he knows looking down brings on so much pain. He pushes me out of the kitchen and pulls me over to the couch. And then he takes over the chopping.


I still do a lot. All right, I still do too much. That’s probably not going to change. But having a husband with limitless energy, who is always willing to step in and do what I can’t, that’s my saving grace. And I can never thank him enough.

 

Last update: Feb 2016