Tuesday, May 12, 2015

My Fibromyalgia Awareness Journey

The guts to go public with this blog didn't come easy. It required high-doses of Prednisone, to be exact. The year was 2010, and it was an infinitely simpler time in the world of social media. Or so my naivete thought. My Prednisone-high made me so empowered to bring awareness to this horrible illness, it inspired me to rip out my guts and spew them all over the pages of this blog. I figured I'd been through living hell and survived, so maybe my words could help someone. Hindsight is such a bittersweet lover, seeing as I was knee deep in the middle of my second waltz through Hades, but was too fucked up to realize it. 

But, back in the beginning I didn't just pen this blog. In order to get people to read it, I tapped into the fibromyalgia community on Facebook and started promoting my writing. Much to my surprise, not only did people read my blog, but the feedback I got was incredible! Suddenly, my feelings of total estrangement from normal society lessened a little as I started to meet people who understood my experience. Sure the details differed, but we'd all been kicked in the teeth by the impact an unexplained chronic illness has on one's hopes, dreams and the progress of living life. To say it's anything less than a bonding comprehension would be to understate the severity of the suffering.

Sadly, it didn't take long for my new-found joy to go completely awry. Looking back now I can't remember if I got off Prednisone first, or if the cyber-bullying predated my foray into one of the most physically and mentally weak phases of my entire life. All I knew was my world was crashing down around me, all the work I'd done to get my life back from fibromyalgia had been obliterated, down was up, day was night, good was evil, evil was all there was, and the people online were viscous. Mean. Attacking me personally on such raw levels, the woman writing this today can't believe I even took it seriously. But, alas, I did. After that, I nearly lost myself in an abyss so dark, I didn't know such caverns of blight existed.

Like a cloak of impenetrable protection, my ensuing retreat of anger and betrayal exiled me from the online world in nearly every way. The only reason I didn't delete this entire blog and the Facebook support page I started was because my husband physically stopped me from doing so. I felt so exposed and abused, I vowed to never allow the world at large such open access to me ever again. I shoved my sweeping plans for fibromyalgia awareness on the shelf of "not worth my sanity," and channeled all my intentions into writing my fiction book about a girl whose life gets all screwed up when she gets fibro. When I could muster up an intermittent blog, they pretty much covered the same rotation of three safe topics in an endless, tired reprise. Knowing I had to defend every damn word I wrote to my dying breath left me with little to say, and even less of a desire to say it. As I settled into life as a reclusive, anti-social loner, the last of my innocence nearly a decade of sickness hadn't stripped me of yet, truly died.

The funny thing about my life is for a long while the bad just kept coming, and it wasn't over yet. I learned this the day my rock crumbled. Suddenly overnight, I had to find more strength inside my bitter, angry, weak self than I'd ever possessed in my entire existence. Life reached such a basic, fundamental level of sink or swim, I became terrified for my own survival. That fear sharpened my fighting claws into vicious blades of determination. In the ensuing weeks and months, as my impending demise grew increasingly smaller in my rear-view mirror, I finally understood what a survivor I truly am.

While the deep scaring all this trauma slashed into my heart has mostly healed, I can still only engage with social media in very limited doses. It took a lot for me to recognize anyone who does anything on a large scale is opening themselves up to ridicule and hate. As much as I wish I realized it in the beginning, it's a hard-fought lesson I won't have to learn twice. But knowing it's par for the course doesn't make it any easier to absorb. So I'm tender, delicate, and still very guarded in my online dealings. I'm also almost done with that book, and still have every intention of raising tremendous awareness about the horrible disease that gobbled up my life.                       

Thanks for joining,
Leah

#fibromyalgia #fibro #chronicillness #chronicpain #invisibleillness #fibromyaligaawareness  

9 comments:

  1. Just ordered a wristband. I don't have lilac days any more but the other colors will be handy. ;) People can be extremely rude and mean. I've been burned online too and become more cautious. Gentle hugs, fellow fibro sufferer. In the end, my close relationship with God has kept me strong. His viewpoint of me is all that really matters. That gives me some peace in a world gone mad. If you do have a spiritual side, I recommend prayer or talk to someone you trust. It always helps me feel better to pour my heart out to someone who really does see everything going on inside and perfectly understands what we go through. My husband does his best and through my attempts to describe what I go through and showing him online experiences, he is beginning to understand. You don't have to fight the whole world. Just put your experience out there. Fellow sufferers appreciate your viewpoint and really get what you are feeling. Keep up the good work but don't break your heart over unfeeling people. Hope you have a lilac day! ;) ~Tyger~

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  2. Hi Leah,
    I very much enjoyed your post. On my lengthy and painful journey from Fibromyalgia to remission I too experienced many critical, judgmental and hurtful people. However I also met many who were also suffering and eager to share their experiences and listen to mine. Think about those who are helped by your blogs. Keep writing, keep sharing and helping. "Through helping others we help ourselves."

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  4. Oh Leah,
    I can't tell you how much this touches my heart! As I began my nightmare with Fibromyalgia, the isolation was palpable. Such a socialite I was, the invites slowed down when I kept saying no and when my normally bubbly personality became sad and sick, but as we all know it's a sick few understand. I took to all the wonderful Fibromyalgia groups on Facebook. At first it was all sweet, I was almost euphoric, finding others like me out there. Understanding what I was going through I no longer felt so alone. Not a replacement for the wonderful life I had lost, but something to hold on to.
    It took me two years of twisted people, usually group admins, who at first loved me and eventually, when I didn't behave, punished me. It became agonizing that someone behind those pages could make me cry, again isolate me at the touch of their keyboards. I started to realize that these groups took the form of most groups, only they had a computer to hide behind. Much like middle school, you were in or out. And I finally met the one who made me decide it was better to walk this journey alone, then go through the misery, lies and just unimaginable behavior.
    I now walk this journey alone again. I was sad for a long while, but I learned a lot. Now I can look back on my years in those groups as meeting some kind people who helped me through the initial horror of my diagnosis. Some of those people where fun, some were knowledgeable, all of them I know longer communicate with. The worse of all happened on the day I was packing for my first little vacation since I was diagnosed. That was one horrible day. The person I was traveling with had to cancel because her father was in the hospital. Afraid to travel alone, this was a huge hit. At the same time, a FB "friend" fed me to the dogs. Funny, she claimed to be inept at FB, yet the minute she turned on me she quickly dragged me down, in a snap of your fingers. I was lied about and she spread those lies everywhere, with everyone I knew. One of the worst days of my life. I took that trip alone, stayed in my room the entire time as my Fibro flared from what this horrible person had done.
    No more ever letting anyone who hides behind the screen of a computer hurt me in that way. I learned my lesson and I stay away, except for old friends I do not enter the door of any group.
    You didn't tell us what happened, but I can imagine, I think. I hope you realize that these ignorant, hateful, twisted people are just as bad as the black web people who steal your information, only worse, these people try and steal who you are. I decided not to let them do that anymore. I hope you decide the same. Keep doing what you do and don't for a minute think you have not achieved your goal. You have touched me and I believe thousands of others. Remember your blog was entered as one of the top health blogs. That doesn't happen unless your are serving people who have a need and doing it very well!
    Love,
    Lorraine Calvert

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  5. So sorry that this happened to you and made you need to be guarded about what you write. I have enjoyed reading your blog and was excited to see you were trying the "work" deal again. Good for you!

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  6. It stinks that people can be so cruel and hide behind the computer screen. There are way more of us that think you are wonderful. Sharing your most personal feelings and what you have gone through has touched me. I don't post much but you should remember that many people read and do not comment. I also voted for your blog. Keep your head up and keep posting.

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  7. Fortunately or maybe unfortunately I already spilled my guts on another blog so I am not having to be quite so informative on my fibro blog. I just figure if it makes things easier for someone it is worth it.

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  8. My attention span is bad an I'm fatigued, I confess I only could read some of the blog!!! I ask you to keep screaming even louder cuz the doctors in mass have stopped giving shit about us, now we are just chronic complainer drug seekers in this perfect hateful stAte with great hospitals for only insured and big bucks!!! Thank you

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  9. The chronic pain of Fibromyalgia affects nearly 5 million Americans. It affect mostly the women that are aged between 25 and 60.i always lay more emphasis on curing Fibromyalgia naturally. You can intake "LEVARE- Natural pain reliever pills. These are really best. I personally experience this.

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