I am a Survivor. With a big ol’ capital S. Why the big S? Because being a Survivor requires the acknowledgment of something stronger than just a name or description. It’s not who I am totally, but a big portion of my heart, soul and body. - Shani Kenny 2015

Tuesday, September 29, 2015

An open letter to my monster.....

I wrote this a month or two ago. I wanted to put this up here for you all to see. Believe it or not, writing this out was healing in a way. I'm able to see the words and know that in some way, I'm proving that it won't get me down for long!

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To my Fibromyalgia monster,

It's a love hate thing you and I have going on at this point. On one point I love the fact I FINALLY have an answer for the years of pain and suffering. I love that this "thing" has a name and an explanation if you will. I love that I can say, "Hey I'm not a lazy bum ass bitch, I DO have a problem. I have FMS." or "I'm sorry my ass is too slow for you, you know some people have FMS" and it be real.

On the other hand I hate you. I hate you because you ARE a part of my existence. I can't get rid of you, I can't fix you and I can't get you to move on. This relationship we have isn't going anywhere. So why can't I make you go? I'm looking for those answers to no end. And in the end, I have to come to the terms that there are NO answers to why you won't go. I have to submit to the fact that you will be with me until my dying days, even though I hate you. But I'm not ready yet to submit, I'm not ready yet to stop looking for answers. If I give up, if I submit, you win. Just like the ugly demons that have stalked me since childhood. I don't want that. I have enough demons why do I need a monster too?

Great question huh? Some days I think I have the answer to at least that one. I fucked up in my life. I made the wrong decisions. I hurt someone along the way shouldn't have. There was a point where my life hit a wall and I couldn’t get over it so now I have to suffer. Those are the bad days, the really bad ones. Like the last few days.

Funny how my family asks me what's wrong when I get this down and I have no words.  I tell them I'm ok for many reasons. I don't have the words to express it. I don't want them to have to feel that pain or shame. I feel...lost. Depressed, I feel pain like I've never felt before. I'm sad because I can't do what I need to for my family. Never again will I be able to work a regular job again. I can't do things with my family like I should be able to. This thing, this disease, this monster, took over my life and I can't figure out how to conquer it or make it easier. I'm letting my family down is how I feel you know. Like if I wasn't so gimpy or fucked up that they wouldn't have to slow down, they'd be able to do more and not have to wait for me or schedule things around a certain time so I can get up and be able to move around. How do I tell them these things without hurting them? I can't. So I suffer in silence. I suffer within myself and beat myself up. I sit in the bathroom when everyone thinks I'm going potty. And I cry. I cry for myself, for my pain and for my sadness. I cry out of anger because I can't express things to the ones I love without showing how broken  I really am.

It hurts. Not just the physical pain but the fact you’ve taken so much from me. You hooked up with Arthur (Osteo Arthristis) and wreak havoc on my body. You treat it like a jungle gym of sorts. Climbing from my knees to my thigh where that pinched nerve radiates pain down my leg and causes numbness. Up to my hips that are so fucked  up from an accident as a kid. All the way up my back where the screwed up discs are. Then, bouncing back and forth to my shoulders that have rotar cuff issues. Then you finally hit my neck that aches constantly. You make your way down to my arms and play with my carpal tunnel, numbing and causing electricity down my arm no matter what I'm doing. Some days ya'll continue this journey back and forth up and down and expect me to just deal with it. Is it a party to you? Is it a joke? It must be.

I really hate you. I don't use that word a lot, but I hate you more than my abuser as a child, I hate you more than anything I've ever dealt with.  I hate that you take away from me so much and give me nothing in return.

I'll never forget the story I read about the "spoons" that Sam shared with me a few weeks back. I sat here reading with the tears flowing. A woman figured a way to tell her friend what it was really like to have Lupus, another "hidden" disease. She used spoons as her visual and as she told her friend you have this many spoons for your whole day. For every activity you do, it costs you a spoon. The friend soon realized that every spoon taken away was how hard it was for the woman to deal with the day. That hit me so hard, and I felt the reality even more. You take away my spoons. You take away every spoon I set aside for the day no matter what the occasion or what has to be done. I hate you for that; you take away from so much more than me.

But you know what? I vow to figure out a way around you. Whether it's meds, activity, or mind set. I vow to fight you for my life. I might find acceptance for your presence in my life eventually. But I'll never submit. If it wasn't for my family or my friends and my Mama Sassy and my mama, La La in heaven and the grace of God, I'd have submitted a long time ago. But I won't. You WILL not win. FMS Monster, you will be weakened in return. It's a promise.

Forever strong and Forever a Survivor

Shani


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