Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

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.

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2013

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.

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2016

 

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Comments on: "Progress; Laughing Through The Pain" (6)

  1. Pam Kinzler said:

    Hey, my botox is a week late too! I think I will try to laugh through the pain!!!

  2. Damon Stalford said:

    I to have Dystonia, and I know that you must be in pain like me. Mine is called Cervical and two years ago it tore my neck apart. Had to have a triple Discetomy, and now have Titanium hardware from C4 to C7. I need to have yet another surgery at C2 and C3. My dystonia hits hard every day and the treatment that I receive is steroid injections once every three months (12 shots). I get monthly injections of Lidocaine and something else ( 6 shots ). I’m also taking 120Mg of Narcotics daily. It does feel good to get out and visit with friends and family, but the pain is always there and I try and be as positive as I can. My Pain Doctors recommend that I don’t do the Botox treatment. Doing my best at trying to enjoy life. 🙂 :-).

  3. Your Botox seems to be a week late, a lot.

  4. Greetings! I have Dystonia as well (generalized) which is a bittersweet circumstance. I’m from the USA and I read your blogs from time to time…today particularly I decided to comment as I found myself saying ‘YESSS! GOOD FOR YOU FELLOW WARRIOR!’ while trying to put a fist in the air (you can likely imagine how that went – couldn’t quite make the fist, arm had its own agenda!!!)! We must celebrate every single victory. I have a very similar attitude about this whole “circumstance” which inevitably just happens to be a part of our personal lives/journeys (we ALL have something). It truly requires a special kind of attitude, strength and definitely the ability to laugh with and at ourselves; I thank goodness for the “ridiculous” gene I inherited! Of course it’s not funny by any means but having that ability sure makes it easier to navigate the terrain of uncertainty. So kudos to you, happy to know that you have were able to enjoy your time with your sister/family and your self in that light 🙂

    Sincerely,
    Mel

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