That's okay though, I'm awake and there is lots to do before I go to work today.
"The best way to predict the future, is to invent it" Alan Kay
For over 10 years now, everyday, I tell myself "I am happy, I am healthy and I am successful". Whatever makes me happy, remains to myself and the Universe (which is why I find happiness in the smallest of things.) The healthy aspect has kind of given me challenges over the past few years, but my crazy self still believes someday I will be healthier than I am now. CRPS won't go away, but I will find a way to live more comfortably with it and my other conditions. Success is a goal for everything I do, just the accomplishment of doing is success for me. One day all 3 will come together nicely and I will be able to enjoy that paradise from my dreams.
In the meantime, I work with what I have. No matter how limited everything may be, there will always be something I can do with some of it.
I can't go to the beach whenever I want. I wish I could. But the vibrations from the car are enough to hurt. Add the air, cool water, textured sand and sounds of people laughing and having fun could send my pain levels through the roof. One of my FAVORITE sounds in the word is laughter, I love how contagious it can be feels good for the soul. But sometimes, it hurts my nerves and attacks my leg or arm.
Well that's a twisted reality I try not to think of often. The things I used to enjoy, now truly hurt me. Intensely. Fireworks, live music, THE BEACH. Oh mother trucker, life can be a jerk if you allow yourself to think of certain things.
Complex Regional Pain Syndrome is rated 42 out of 50 on the McGill Pain Index. This is the highest rated condition or incident on the index, above childbirth, non terminal cancer, amputation of digit, other chronic pain conditions and anything else you can think of. It is real. It takes over almost every (If not, every) nervous system in the body and can change a persons life dramatically. It makes even the slightest touch feel amplified ten times and like pain, the 42 of 50. It can feel like shocks of wavy fire. More often than not, my right arm and leg are cold to touch for someone else, if not, they are warmer to touch, but its always fire from the inside. They're usually colored funny and are sweating, even if they are cold. They are often swollen, sometimes they get to the point where I worry because there can't be much more skin there for the swelling to go into, I'm a small girl. They are visibly affected.
That goes without saying how funny I look when I try to use them un-medicated. Even medicated, I have to twist or turn my back and shoulder or drag my leg so I can get by and do what I need to do. This is truly not a happy or fun way to live. Especially without being able to enjoy the things I used to for my soul therapy.
I can't even get up to my real paradise here on earth. The driveway is too steep and I cannot get on a 4 wheeler anymore. I'm too broken from the CRPS, spine damage and fibromyalgia. My nerves are damaged and everything causes alarms in my brain.
These things are difficult on a Hippie heart like mine. So while I'm sharing my life here with you, in an attempt to raise awareness to the difficulties that CRPS patients go through, please be kind.
Also, I'm on a bigger mission. So, I'll enjoy the small things in the meantime and watch them pile up :)
The 2nd Annual Walk to Conquer CRPS will be August 31, at Point Pleasant Park in #Halifax. We are raising funds for #MedicalResearch that is happening in #Montreal. This research is for a new treatment option for CRPS patients, and if you haven't noticed by reading my previous blogs, we need options :)
https://www.gofundme.com/f/walk-to-conquer-crps
https://www.canadahelps.org/en/pages/walk-to-conquer-crps/
Both of those pages will allow you to donate directly to the cause by clicking a few buttons. Every bit counts.
So, I'm falling apart without treatment and symptoms growing. My sleep is gone, my body cannot rest or relax, my pain is more intense then I ever wanted it to be. I just want to make the 2nd Annual Walk to Conquer CRPS a success so others don't have to go through the same shit I do.
I want everyone to know that CRPS and RSD mean one thing: Complex Regional Pain Syndrome. They are both the same thing, with the same intense pain and without a cure. #CRPS1Name
Make today a great day with positive thinking. No matter what life is handing you, you are strong enough for it. I promise.
Positive thoughts,
-Kristen Sparkle
@ConquerCRPS and @HippieRaysWays on Instagram
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