As Dystonia Awareness Week draws to a close it is hard not to draw comparisons to previous years. Today is my beautiful sisters 21st birthday; Happy Birthday Eloise! To celebrate we drove down to Portsmouth, where she is studying, to visit her for the day. This is something we do each year for her birthday, and it’s always a fantastic laughter filled day.
The first year we did this was 2013, my Dystonia was still very much new to me and we had not found a treatment regime that worked yet. Due to this I had sunglasses on and off all day as the sunlight was aggravating my blepharospasm, I was wearing several layers and huddled in blankets as the bite of the wind was increasing the severity of my spasms. At this time, I was completely reliant on a wheelchair. I had major trust issues when it came to people pushing me around, I was terrified they would tip me out, so you can imagine how I felt about this.
Whereas today I got out the car and strolled to my sister’s house; if I had still been in my wheelchair I would not have been able to get through the front door! I was able to enjoy the sunshine without worrying about my eyes, and it was hot enough to not need to layer up. Even though my Botox is a week late I only had a handful of spasms over lunch, and I simply laughed through the pain. I think my mother may have doubted my sanity at this point as she asked me to recite the alphabet backwards to prove I was completely conscious.
Today has been extremely upbeat, it has shown just how far I have progressed thanks to ongoing treatment.