I live with chronic pain. I live with the heritable Connective Tissue Disorder, Ehlers-Danlos Syndrome, or EDS for short.
I had quite the diagnostic odyssey to get to this point – the point of knowing what the heck is and has been wrong with me my entire life. It took 17 years from the ramping up of my symptoms around puberty to get here.
An EDS diagnosis means that the connective tissue throughout my body is faulty. It is fragile and easily injures.
Watch: Chronic pain, explained. Post continues below.
My joints are extremely lax and prone to subluxation, strains, and tears. The real problem with EDS is that connective tissue is right throughout the body. This means that any and every organ system can be affected. It truly is a multisystemic condition.
I am a pharmacist, although I no longer work in a traditional sense as a pharmacist. I once was also a long-haul flight attendant and a real estate agent and I still am; a mother, wife, daughter, sister, friend, and aunty.
But I am now also a rare disease and chronic pain patient, and perhaps most importantly; an advocate.
You might be wondering what it means to say, 'I live with daily chronic pain.'
Well, to put it bluntly, I am never not in some type of pain. Pain is a constant and ever-present companion to my life. Of course, it fluctuates, but yes, it is there all the time.
When I get up in the night to go to the bathroom, it is there. When I am falling asleep, it is there. Strapping my kids into their car seats, yep – you guessed it, it is there.
It is always there.
I remember once early in my relationship with my husband; him being taken aback when I made the completely genuine and somewhat naïve comment: "Doesn’t everyone have a headache all the time?"
For me, the pain I experience includes; headaches of every variety. Low back, thoracic and neck pain. Base of skull and head pain from brainstem compression and both small and large joint pain along with the unrelenting hum that is never-ending nerve pain.
And this is just the 'chronic pain'.
Then comes any acute pain I experience.