April 22, 2021

My Dystonia Patient Story

My Dystonia Story by Emilia

My dystonia story began at the age of 17. I am currently 39 years old. At the beginning, I was  taking medications and had botulinum toxin injections, which helped. Except for maybe for 4 years I had peace, then my disease was in remission. In fact, I think my attitude towards illness helped more. While ill, I finished my studies. I started practicing various kinds of dancing zumba, belly dance, twerk, dancehall, hip hop, jazz, salsa). It was very relaxing.

Writing poems was a way to respond.

Everything changed completely when I got pregnant. Then my general health deteriorated too, that was over 11 years ago. Then I made the decision to stop taking drugs and botulinum toxin. Despite the terrible torment, I worked until the 6th month of pregnancy.  At the time I was still studying and completed all the subjects. However, I did not have time to produce my master thesis. I did it after childbirth. Since giving birth to a child who will be 11 in August this year, everything has changed. I started to feel better.   I don’t know if this is the result of love or responsibilities?

The more obligations I imposed on myself, the better I felt and I passed my driving license which was quite stressful.

Of course, there are days when my muscles and spine hurt. Usually it happens when the weather changes, I’m stressed, have too many responsibilities, or when my period is approaching. Sometimes I have involuntary movements. People who don’t know what’s wrong with me think I’m cold or look at me strangely. However, I don’t care. It’s been a long time since I stopped worrying about what people think about me. I work 8 hours a day, sometimes longer, or even on Saturdays. I live a normal life.

Currently, I have been working remotely for a year. It is better for me because I do not waste my time commuting and sometimes I also have time for overtime work. Although I try not to overdo it. Remote work also causes greater peace of mind, which in my case is very important.  Without wasting time commuting, I can spend it, for example, on exercises.

Dystonia gave me the courage to try new things. I started ice skating, roller skating, scooter skating,   I tried snowboarding. Unfortunately I could not continue due to the coronavirus. Once, I also tried horse riding, which had a very positive effect on me. Unfortunately, I don’t have time for everything.

I have been training pole dance for about five years. Maybe I do not have the same results as a healthy person, but that is not the most important thing. I think I have achieved a lot anyway. Currently, I have my own pole at home, I practice more thanks to this. I also have an aerial yoga hammock and I practice that sometimes. Stretching and Yoga is also great for relaxing. I  also often use Autogenic Schultz techniques before I fall asleep, which is very helpful. At first I didn’t even know it was called that. I made the effort loosen individual muscle groups in my mind.

My husband’s massage is also good for my muscles and good for me. I have Indiba treatments (non-invasive heat treatment) from time to time, which is also helpful for various kinds of pain.

For a year now I have had another passion – crocheting. It is very calming and relaxing. I forget that I am sick. I like to make mascots the most. I think I am good at it. By accident I discovered that I am good in painting, especially with watercolors. So maybe it’s time for another passion. I cannot allow myself to be bored.

Emilia Gaj-Parchowicz, Poland

Link to page with mascots crocheted by Emilia: https://www.facebook.com/Emi-p%C4%99telka-541912956729430