Syringomyelia Warrior

 I am a syringomyelia warrior. You may be asking, "what does that have to do with me?" A lot actually. This is a rare disease. It only affects 1 in 100,000 people. There is no cure for it, and not a whole lot of medicinal treatments either. It's a lot of lifestyle changes and pain management. Most people who have heard of it usually know about it due to dogs. Dogs get syringomyelia a lot.

So, to the question at hand...I am a knitwear designer. I may not have hundreds of patterns, and I don't have a published book (yet). I don't submit to magazines, festivals, and I don't offer to teach my craft to others. This does not make me any less, but it does make me a different kind of designer. A designer who values every one of my knitters.

I would love to do all of the above, but the reality of my condition means I have to accept certain large limitations. These limitations affect the people who follow and knit my work. I cannot teach large groups or even small groups, to knit. It takes so much energy to teach, and I always give my students everything I have. So I had to shelve teaching. I try to make YouTube videos to help address common issues, and I hope they are useful to some. I try to keep regular on updates and pattern development, but it really isn't in the cards for me. So, I do the best I can, and greatly value all of the support I receive from knitters. 

How does syringomyelia affect my ability to work at a normal pace? I work through a crushing rib pain daily. The pain has also been diagnosed as fibromyalgia. I have nerve misfiring throughout my body due to my spinal cyst. Pain can be very wearing. I also have autonomic dysfuntion and and autonomic neuropathy. That means my central nervous system is so not working with me. My blood pressure drops drastically, I struggle with heat and have raynauds symptoms. Sometimes I wake with unexplained hand tremors that make knitting and typing and pretty much anything very frustrating for the day or week it is happening. These are a small number of symptoms I encounter. I don't want to bore you with details. I just want to give you a glimpse into a rare condition that needs more visibility. I would like to weave this information throughout the Bits N Bob's blog, because it is so prevalent in how I run my Etsy and Ravelry shops.  

So, I want to invite you on my journey. We are all warriors for different life experiences. Let's be human together.

(The Bits N Bob's Girl)

Maria