As some of you may know I am sick, or ill, or handicap, or disabled, impaired. Whatever you want to call it, I am unwell and I will be for the rest of my life. Whats wrong with you? some may be wondering, well its a rude question to say the least but I will give an Answer-
I have a connective tissue disorder called Ehlers Danlos syndrome. At the moment I am only Clinically diagnosed, I am waiting to get my genes tested. These tests will reveal what type of Ehlers Danlos I have, I most likely have hEDS with classical features due to my grandmother.
This disorder in lay man terms means that the collagen in my body is weak, this causes a host of problems, I dislocate my joints every day my most frequent are my fingers (20+ times a day) my knees, shoulders and hips in that order come next. These dislocations make me weak, tried and full of pain. On some day/weeks I feel great I can walk the dogs, hike but on some weeks I am so disabled I am unable to walk. The days where I feel great are occurring less and less. My hearing is also impacted, I have noticed a loss in hearing over the last 4 years, this is semi common among some Zebras (People with EDS its our symbol). I deal with passing out from pain and as well as gastrointestinal issues which is also common in EDSers. My heart races when I bend down to pick something up and I often find myself in the dirt, this is due to dysautonomia, which is when blood pools in your legs instead of going to your head. Last but not least migraines, blinding head ache. I mean honestly if you have ever experienced an aura often you can not see anything.
I am writing this blog because lately I have been pretending, playing make believe with myself and others, the truth
I AM NOT OKAY
I put on a brave face, I hate complaining to people but I need to learn that showing my pain does not make me weak, it just lets the people around me know that I am disabled and yes I do need accommodations.
The light at the end of this tunnel for me at least, is the EDS community which is incredibly supportive. The dogs, the whole reason I starting using social media they also help my feel like I have a job to do, they help me enjoy my life and for that I am eternally grateful.
Also would like to mention if any family friends, or acquaintances read this, my boyfriend is enormously supportive. Lastly shout out to my parents for giving me that support I need and taking care of me!
This is a long jumble of words, a garden full of weeds which are my thoughts that have sprouted at 2:49 am. Thank you for reading.