My home is near the sea and I love the sand, the ocean, the crashing waves, the birds, the sunsets…swoon. Prior to becoming ill I’d walk for miles each weekend, barefoot, toes squishing in the sand, and loving every moment of it. Nowadays I mostly watch from afar, but I’m thankful for that option too.
In the beginning of July 2014 I was healthier and happier than I’d been in years. I was working full time in a busy law office, walking around 15 miles a week (I’d had fibromyalgia for 10 years so walking was the best exercise for me), doing yoga almost nightly, I’d been on a whole food, mostly paleo diet for several years, I’d just finished homeschooling my son from 8th grade thru graduating high school with honors, and life was honestly great. Ready for a twist of fate? Near the end of July 2014 my world turned upside down health-wise and honestly, I’ve been attempting to crawl out from under the rubble ever since.
After having been unexplicably ill since July I was diagnosed with an often mis-understood, mis-diagnosed and mis-treated chronic illness called chronic fatigue syndrome (also known as myalgic encephalomyelitis) in October 2014. Why all the miss’s? Lack of funding, lack of research, lack of … luster? Since the CFS diagnosis I’ve also been diagnosed with POTs, pernicious anemia, MTHFR gene mutation, interstitial cystitis, vestibular disorder of the central nervous system and inner ear, blepharitis of the eye, chemical sensitivity and hypotension. In an attempt to take my now mostly housebound life back from the illness and provide my days with a little levity I’ve taken up crafting. Can I just say…I’m what you might call ‘logically minded’, and what you might not call ‘artistic’. Despite my lack of artistic talent I believe the struggle to be creative is very healthy for me, I become so absorbed in the task at hand that for a few moments throughout each day I forget that my world came undone. Feel free to follow along as I share pictures of these “creations” and also share my experiences of having a misunderstood illness in a first world country. Some day’s I promise you, you will be shocked at the treatment, or lack there of, I receive. Well, I should say, if you don’t have this illness you will be shocked…if you do, you will likely nod in understanding familiarity and maybe even sadness. I’ll end by saying that my favorite thing in life is to laugh, so I can assure you, you will chuckle, either at me or with me, either way you’re smiling and that’s a win in my book.