How Fibromyalgia Stole The One True Love Of My Life

Ocean waves

Ocean waves (Photo credit: This Is A Wake Up Call)

Damn this disease. Yes, I know it’s a chronic illness and I have lived with it for over six years, I try not to complain, but that doesn’t work 100 percent. I deal with it the best way I can and each day is different. It has limited MANY outside activities and it has given me pain, incredible weakness and undeniable imbalance. I can handle pain, it’s bearable most of  the time and when it is really bad take pain medications. It’s the “flare-ups” that plague us, those really bad times that are triggered from….pretty much anything.

I am miserable that I cannot open a jar  anymore though I do not have Rheumatoid Arthritis. That is good news so why am I so weak that I have to ask my daughter to do it for me? My doctor’s prescription : “Squeeze a rubber ball.” Really? This does not give me very much confidence but I try to remember to squeeze the ball, when I remember. Remember? That needs a whole paragraph on its own.

Anyone who has Fibromyalgia will know exactly what I mean: the dreaded “Fibro-Fog.” Remembering to do anything with Fibromyalgia is a diseases in itself. I can recognize a face of someone I went to elementary school in an instant but everything else is cloudy. My family/friends are dealing with a person who never remembers what they say.  Imagine how frustrating it is for them and how embarrassing it is for me. “I’ve told you that five times already…” even I, would get incredibly impatient. I’ve seen one too many “eye rolls from my teenagers” to last a lifetime as any parent of teenagers can relate to. It’s horrible to live in a Fibro Fog, cloudy, all the time. That never gets better and it’s probably the one that is hardest for me. Everyone forgets things occassionally but all the time? It’s not Alzheimers (I’ve had a brain scan) it is from Fibromyalgia.

When we save enough money to go on vacation, I always think: the ocean. I have loved the ocean since I was a little girl. I remember being taught how to jump the waves, when to jump over and when to hold your nose and dive underneath. It was a delicate balance, thrilling and exciting, sure sometimes you made a mistake but that was part of the fun too. You just never knew which way the mysterious and unpredictable ocean would go.

I was thrilled when a few days ago my daughter and I were at the ocean. We rode the waves, the water was a bit rough and as I noticed we were getting pulled by the tide, I motioned her to start swimming back. We had drifted off a ways and I wanted us to go back to the direction where we had dropped our sandals and towels. I went first and then the most devastating thing happened to me. I could not get up and out of the water. Truly. I tried six or seven times to get back up and I could not do it, I tried to stand and before I got my balance another wave would pull me down again, over and over. It was in the shallowest part too, tiny pebbles, sand, strong waves at water’s edge. I couldn’t do it by myself and I felt so discouraged, so sad.  Luckily, my daughter saw me and offered me a hand and I was able to get up.

I couldn’t get out of the water on my own. I found this to be so depressing, so disheartening. My one true love, the ocean, my ideal place to live, had been stolen by Fibroymyalgia. It had taken away my strength, my independence, my joy. My favorite place, my favorite time, my favorite fantasy to dream about for the future, disappeared because of this illness. People ask if Fibromyalgia gets worse?  I  say yes, in more ways than one. It affects your body, your limbs and your pain; but more importantly it visciously tears at your heart, over and over again.

The Start Of Good-Bye

In two weeks my son will graduate from High School and head to his summer job, after that he will be going to college. This is harder than I thought it would be. It’s also brand new and I’ve never been too good with change.

Simple yet elegant prom corsage

I literally want to sink my head into my folded arms on my cheerful, flowery bedspread and cry. I want to cry loud and hard enough to erase the pain of change and sadness, new beginnings and endings. I want to cry for all the graduating seniors that will say good-bye in two weeks to their life-long friends, their girlfriends, their boyfriends, their parents, siblings, dogs, pets. I want to cry for me, I want to break down in unwavering sobs because it feels like I am losing my son to the future and I know that things will never be the same. Already, the “Seniors” have changed you can see it on their faces. Next year, my baby, my daughter will graduate High School as well.

I am a fluctuating emotional mess, happy, sad, crying, excited and miserable.  It is after prom and before graduation; it is the time in-between. The Pre-Prom party was at my son’s girlfriend’s lovely home. For me, it was like a Hollywood set, the girls with their glowing, shiny faces and beaming smiles, the sun streaming down on the back lawn highlighting their hair. Girls in long dresses of all colors: fuchsia, beige, royal blue, gold, gorgeous girls, each one of them, with the light in their eyes dancing, their faces sparkling. Their wrists adorned by delicate  wrist corsages awkwardly put on by their dates. I have known some of these girls since they were four. The young men in their tuxedos, stand tall and proud, handsome and mature. It felt like the tuxedo added years of wisdom and maturity to them.They stood brave and beaming, handsome and charming, strong and proud, very proud. Each one had a boutonniere shakily attached by nervous girls with manicured fingers.  My son posed willingly with the three best friends he has grown up with, solid friends, forever friends. He posed with his girlfriend, he posed with his family. This was a boy who refused pictures taken of him since he was nine.

These were not boys and girls anymore, here stood young men and young women going off very soon, to follow their dreams. Even though as parents we try to be prepared for the good-byes, it still hurts us. Like pieces of our heart literally being chipped off never to be repaired exactly like it was before. Our hearts still work but differently. With the young men and women’s new-found freedom, so too, comes pain. As a parent, not being able to prevent that pain is horrible yet I know, being a good parent means just that, letting them go solve their own problems, make their own mistakes.

As a mom, I am on an emotional roller coaster. Am I grieving beforehand like I usually do? Merely picturing graduation makes me wince. When my son actually leaves for college, I hope I will be just fine but anticipation is truly my downfall. I look at the photos I took of Pre-Prom over and over as if I will learn something new each time. Yet, every time I see the photos I see the same thing, utter, unblemished joy and happiness. As a parent, I wish that these things would continue but I know in a mere two weeks a lot of that joy will become heartache. It doesn’t seem fair does it? That is what growing up is all about, I’m afraid, there are always trade-offs.

These youngsters have precious little time to say good-bye to all their friends, girlfriends, boyfriends, best friends. I don’t envy their losses but I am happy for their new adventures. Tonight, on a dark and windy evening, I dread my own loss. My son is one of the nicest people I know, he is moving on and I will miss him. I love this boy of mine and in addition, I truly like him. Follow your dreams, first-born, the world will be a better place with you in it. That, I know, for certain. We will always be here for you, will always love you and support you unconditionally, when you are ready to leave, place that in your heart forever.

The Somewhere Tree

Wind Damaged Tree On E. Knapp Street

Image by Shamanic Shift via Flickr

I don’t exist, at least in the same way I have existed before. You won’t recognize me; I’m hiding out. I am a thick, sturdy, massive tree and maybe I am folding someone deep inside me or around me, or in my sturdy limbs high up into the rich, blue sky. I won’t tell you. I have disappeared because this is where I want to be. I don’t know if I will come out of hiding sometime or will stay behind these thick brown roped off curtains I made myself that contain me; comfort me. If I am hidden no one will steal my heart or break it into shards of mirror glass and take advantage of me.

Maybe my silhouette or the swing of my wiry tree hair show as the wind passes by my burlap sap and brown cloak. I intend to blend in with others, or maybe hide behind them for as long as I choose; for as long as I need. I felt a lot of things that I don’t feel anymore.

It’s as if I am out of my body looking in, trying to remember who I was and why I was that way. My heart was way too open, and too big for my body. My emotions were on overdrive, my thoughts obsessed with sympathy and kindness. I sat up once, curled into myself, sobbing. This was not my fault, these were conflicts I should not have been allowed to witness. This was NOT something I did; I am innocent. Something, somebody should have been there to protect me, to draw me back out of the wind, to rescue me but no one did. This attack felt like a tsunami or a tornado.

My eyes peek out behind the outline of my shadow. They dart back and forth, to the left, to the right and then they close.  It is all black and rosy and peaceful when my eyes are closed. I choose not to see anybody. I am now a tree that has stood proud and tall with missing branches from the high winds; limbs cut off, dangling in the middle between life and death. Too many people in this world judge others, that’s not how life is supposed to be. Sit with me on the grass and listen.

Life is hard, we all know that. At my age I have experienced hardship as well. There is no age limitation on pain, physical and emotional chronic pain. Back off, please don’t try to touch me; I can almost feel you near me and I don’t want to. I will shrink and cringe if you approach me. I will go inside out.

I have helped you from my heart but that same heart is no longer here. It cracked into bits and never put away. It was not like a picture puzzle; the pieces don’t fit in the right place anymore, and they won’t. Once you have lost your heart, or it has cracked, your heart will never beat in the same way again. You will skip a beat or you will have an extra irregular beat but it doesn’t matter. It doesn’t take away the love that was in your heart; I am protecting my heart.  You can also feel that you are being hit, again and again, until you gasp with pain and have trouble taking a breath. I am a tree in a blizzard, fighting to stand strong, my limbs are moving, my bark is now unattached, flying into the air, everywhere but home to me.  You can still see the tree but it is not the same. I tried to show you who I was but you left, not noticing that the tree you once loved was now completely different. You walked away.