Monday, November 20, 2017
When you are told not to let your disease define you.
I get a lot of advice from well-meaning friends, family members, and my doctors. Sometimes it is helpful and other times I want to implode. I understand that my chronic illness is difficult for them to understand and most of the time it seems like I am consumed by my dystonia.
On Facebook I post a lot of stories and and share updates from my amazing doctors. I usually get a few "likes" from other patients, doctors, and my closest friends who know my struggle. Everyone one else has probably unfollowed me or just keeps on trolling on through. I am hoping to spread awareness about dystonia but the only people looking are already aware.
What many of them have said to me is "Don't let dystonia define you". "You are not dystonia". "Maybe if you tried a little harder not to think about it". "Have you tried this - (Insert endless suggestion list here) exercise, herbal tea, prayer, books, diet, etc... ?
What they don't understand is that when you have dystonia you never get a break from it except when you sleep. Sleep does not come easy for me and I have suffered since I was 19 ( now 30 years ago) with falling asleep. I would take sips of NyQuil back then. Later I used Tylenol PM. Then Amitryptaline. Then Xanax. None of it helped long term. In 2011 I had insomnia so bad I ended up admitting myself to a inpatient psychiatric hospital because not one doctor could find the source of my neck pain, anxiety, gastrointestinal issues, hearing loss, immune deficiencies and headaches. I thought I was nuts. In the Psych hospital I was diagnosed with PTSD from a childhood trauma. There they gave me trazadone and celexa. It helped for about three months then back to feeling wired and tired and I still had crazy pain in my neck. When my head finally twisted and I had tremors and pain so bad I cried all night and most days I was finally diagnosed with cervical dystonia. (which four months later I found out that the cervical dystonia was secondary to the oral dystonia which is my primary diagnosis). It took almost thirty years to for me to get properly diagnosed. One doctor prescribed me ambien and it was amazing and the best sleep I'd had in years. Unfortunately , they only gave me a 30 day supply and said that there were too many risks involved. I was willing to sign a waiver or do anything for more. I guess there have been reports of people driving cars and sleepwalking while taking this drug and doctors don't want the liability. I totally understand, but at the time it was incredibly frustrating. Now I take herbal supplements that seem to work fairly well. Controlling my anxiety has been the greatest hurdle.
So I have been defined my whole life by dystonia. Dystonia was very sneaky but now I know the "why" to all of my symptoms. All of these symptoms are still with me. Every day. I try not to complain as much to anyone. On days when I can't feel my left foot or my lip and cheek start twitching - it's hard to ignore. When my left quad feels like a cable or my foot gets stuck in a "charlie horse" cramp - it's hard to ignore. When someone says, "look at this" and I cannot turn my head in that direction without pain or without physically willing and pushing myself to do it-it's hard to ignore. When I have insomnia and start to panic thinking about the trauma of being locked up for 8 days I get scared and that is hard to ignore. It is impossible not to feel "defined".
I am trying to get out more and the Botox has helped ease the spasm and pain along with my exercise regime. That regimen takes up to 3 hours a day. My whole life has been spent dealing with dystonia and still is. Now that I know the definition of dystonia I can redefine the meaning and hopefully help others who feel lost and are suffering. If dystonia defines me, then so be it.
You can see the published version on "THE MIGHTY" HERE