My name is Deanna Lynne. I’m 23 years old. I live with my boyfriend Justin and our cat Calypso. This is the first in a series of guest posts to my Mom’s Blog. My Mom has written about my struggles with health since May 2011, when I was diagnosed with Dystonia. My guest posts are my attempt to describe what it’s like to live with my health challenges.
I was motivated to do these posts by a woman at UNT, who suggested that my mission might be to enlighten people about my “invisible illnesses”. You see, most of the time, I look just like any other 23 year old woman. You would never know that I suffer from two rare disorders and that they prevent me from doing things that others take for granted, like driving a car.
A typical day for me starts with getting my face tickled at 6AM by my cat’s whiskers. This is her way of telling me she’s hungry. After I get up to feed her, if I’m lucky, I can go back to sleep for a while. When I finally get up, I take a shower, get dressed, have breakfast, and play Solitaire on the computer. Justin gets up after me, and we spend 30 minutes watching a TV show as Justin eats breakfast. Justin, who is a recent graduate of UNT (University of North Texas), then begins his job searches/job applications/application follow-ups for the rest of the morning.
While Justin is job-hunting, I may listen to music, clean dishes, rub Justin’s back, read a book, or play with Calypso. Playing with the cat doesn’t last long – 2 or 3 minutes tops until she wants to go to sleep. Lately, I have been doing a walking indoors program by using a DVD. Last week, I walked a mile a day. This week, I’m doing two miles a day.
Sometime between noon and 1:00 PM, we have lunch. Once lunch is done, Justin will take a break to play video games for 30 minutes, and then it’s back to job-hunting, or other tasks that need to be done, but mostly job-hunting. Finding a job these days is not easy. I will spend my afternoon talking to friends on Twitter and Facebook, or watching “You Tube” videos on make-up looks, taking notes and then trying to reproduce what I’ve seen. If I haven’t exercised in the morning, I’ll do it in the afternoon.
At 6 o’clock, Calypso comes over to me and meows, which means it’s time for dinner. I feed Calypso, and Justin prepares dinner. Justin is a really good cook and it’s something he enjoys. After dinner, we settle down for television until about midnight. Justin continues to do job-hunting activities while we watch. He does follow-ups on applications by email and phone, and more job-searching.
I watch a lot of television, but I honestly enjoy it – today’s shows and those from prior decades. One of my favorite old shows is “The Mary Tyler Moore Show”. I’m also a big fan of “Everybody Loves Raymond”. New favorites are “The Vampire Diaries” and “Archer”. Justin introduced me to Archer. I’m a TV junkie and I admit it.
As you can see, my daily life is a somewhat boring and predictable routine, but it is often interrupted by an unwelcome visitor – Dystonia. For instance, two nights ago, while watching TV, I started shaking. My head was hitting my shoulder, my legs were bent at the knee and kicking towards my face, my arms were flailing around, and my tongue was moving in and out of my mouth (NOT the time for a kiss). My fingers were contorted, and my abdomen and back were moving up and down.
This is a typical Dystonia episode.
Well, it’s typical for me, Dystonia doesn’t affect everyone the same way. Most of my body parts are usually involved. If I’m lucky, my tongue stays at rest, but I’m not always that lucky. All this involuntary movement often hurts because I have no control and my muscles just do what they want, moving past a place where I am comfortable. This is especially bad in the abdominal area. I have strong abs but when they bend in unusual ways, it hurts.
Justin and I have learned techniques to keep these incidents from lasting longer than necessary. Justin puts his body in between my bent legs and tells me to breathe. This is hard to get control of at first because of my tongue moving in and out – but if I am persistent it works. Having a coach (Justin or my Mom) helps. I start taking deep, regular breaths, and the shaking slowly comes to a stop.
But I must continue to take deep breaths because now I’m locked up in an odd position. Justin brings me water because he knows water calms me down. I have to sip it through a straw because my head is tilted out toward the side. Justin stays by my side until my body becomes unlocked. Then we continue from where we left with whatever we were doing, as if this rude interruption had never happened.
I don’t have nearly as many Dystonia attacks as I did when it first appeared in my life. I often had as many as 30 episodes a day back then. Now, I have about 1-2 episodes a week. If I’m lucky, a whole week may go by with no episodes at all, but that is rare. Unfortunately, there is no cure for this rare disorder, and there is no standard treatment, no miracle pill that keeps it totally under control. I always have to be prepared for the unexpected, because Dystonia attacks with no warning at all.
My illnesses prevent me from driving, so I am homebound most of the time. When Justin was a student, he was home often (even if he was busy studying). Once he finds a job, I will be alone during the day. I have found ways to keep myself occupied, and I try not to think about how lonely it may get when that happens.
I will tell you about my other illnesses in future posts. I hope you enjoyed this brief look into a day in my life with rare disorders. And I would like to say that if you have a life struggle, just tell yourself it could be worse. I always keep my head held high. I tell myself that I have my family, friends, Justin, and God that I can talk to.
God bless and have a great week.