My life changed years ago, when I
got injured from a fall. Then, with ensuing injuries, it changed more and more,
as something about my body was suddenly different. The injuries weren't healing
properly, the pain was disproportionate to the actual injury and, unlike
before, my body had become frail – making me susceptible to more injuries,
resulting in more disabilities. All normalcy was lost and that began a downward
spiral. Because the injuries weren't healing properly, I was in constant
pain, I moved slower, and my movement was limited. I needed assistive devices
for walking, for reaching, and pretty much everything.
Bear in mind, throughout this whole
ordeal, I did not know what was wrong with me. The doctors had no clue; hence,
no diagnosis. To my surprise (and dismay), without a label, there’s no credibility!
Many people thought I was faking and, even those who believed me, thought I was
exaggerating the pain. One friend, who had committed to driving me to work,
suddenly decided after two weeks that she was enabling me. And one family
member, who thought I was faking, made my life miserable for years. I know no
one can understand the disease or what it’s like, without experiencing it. But understanding
it is one thing and believing it is another. Or, more precisely, believing YOU.
I now have a good support system among my family and friends, albeit smaller
than years past.
Finally, after eighteen years, I was
diagnosed with RSDS (Reflex Sympathetic Dystrophy Syndrome), now called CRPS
(Chronic Regional Pain Syndrome). There is no cure, as of yet; but research is
ongoing and strides are being made every day. Over time, my injuries rendered
me unable to work. And, having had this now for 30 years, my life is very
confining. I appreciate the abilities I do have and keep very busy. Along with
writing books and advocating for awareness of RSDS/CRPS, I enjoy crafting and
other hobbies, along with the friendships and support of other Chronic Pain
patients I’ve met online.
by Jane Gonzales
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