How Fibromyalgia Stole The One True Love Of My Life

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.

Lazy Sunday Afternoon

gratitude (Photo credit: nathalie booth)

I’m still in my blue fleece pajama bottoms with cherries happily bursting on them and a 20-year-old mauve Cape Cod sweatshirt and I have no interest in getting dressed. This is my outfit today, I see no reason to change. It’s freezing outside, and if my tensed up bones need a break (no, not literally) I will give it to them. Cold weather is not good for people with chronic pain or Fibromyalgia. Trust me. I know. It’s too early to long for Spring.

The wind is howling outside, seeping in to our little house’s walls, windows. I am under a mountain of blankets with my dog. She could lie beside me or at the other end of the bed, but no, she picks the place over my feet to settle down. My dog, my mutt, was a wild puppy, I struggled bitterly with her biting and pulling and ransacking the house. How my friends encouraged me to “hang in there, she’s just a puppy.” At 8 months, she is still a puppy but a better one and most certainly a larger one. She no longer bites into my hand as if it was a cheeseburger. I’m not as steady on my feet as other people, because of balance issues, so I hope she behaves.

Our children have left for their respective colleges, the house is comfortingly quiet, and we are happy,  probably because I know the kids will be back in three weeks and because this happened to be a lovely Thanksgiving weekend. No fighting, NO DRAMA and a good time all around. My daughter didn’t even object when we told her she needed to see a doctor, she came home from her appointment with a package of antibiotics and a diagnosis of bronchitis. No, you cannot drink while you are on antibiotics. As my kids used to say “Nuff said.”

There are more leftovers to eat tonight, I’m not even sick of them yet. It’s hard to get sick of turkey, cranberry sauce, my Danny’s home-made, unbelievable stuffing and Polish rye bread “from the Homestead” in Kew Gardens, Queens where we both grew up. There is nothing like that bread, it brings back all sorts of childhood memories: standing in line, getting sandwiches made, deciding between the shrimp salad, or chicken salad, imported cheeses, home-baked desserts: cherry, apple and cheese strudel, chocolate layer cakes, and the traditional jelly doughnuts for New Year’s Eve.

Like last year, we won’t be exchanging gifts this Christmas. Everything is so expensive and times are hard. My husband has a job but I can’t work and I live in silent fear of him losing his job since the economy is so bad. If that happens, we will deal with it then. My present this year will be the memories of this past weekend, the family getting together at our house for Thanksgiving. The memories of the pretty amber lit candles that lined the middle of our long tables, my dog, lying on the green couch, the four cousins whispering together, the three grandparents still with us, childhood friends that I grew up with here, and the giant dessert spread we had, enough for 40 people not 14. We had a warm place to sit, food on the table, we were all grateful to be here, we escaped the worst from Sandy; we were very, very lucky. For this, and everything else, we gave and continue to give our thanks.

I Blame My Dog 100 Percent

Dog sunny Day Afternoon (Photo credit: allert)

It’s not my fault that I fell yesterday, really. It’s HER fault. My dog, (mega-puppy) pulled me so hard that she knocked me down on the driveway to greet our neighbors across the street. Granted, I am not strong. I have Fibromyalgia and NO balance so that is my “fault.” She left me lying down on the pavement. Twice. What happened to dogs being loyal? Not this one. I tried to get up and what does she do? She yanks the leash again and down I stay with another set of bruised knees (on top of the last set.)

I didn’t have time to drop the leash, this girl is fast and strong.  Not to mention that she made me drop my Fribble! To those of you who don’t know (and I am a recent convert) a Fribble is a milkshake that Friendly’s makes from soft serve (my friend Mark said it was from ice-milk so I’m not 100 percent sure if either or both are correct.) It’s cold, thick, creamy and utterly ( those of you who really know me, I was tempted to say udderly) delicious. Lexi made me drop my coveted vanilla Fribble all over the driveway and the rest of the day went downhill after that. Thank you Lexi.

So, with bumps and bruises all over, I limped into the house with super-puppy in the hands of our neighbor and my husband helping me up and inside. It’s time for the big guns to be called. I know I have a balance issue and yes, I know I am not strong but this is getting ridiculous. My husband is threatening to call the canine police trainer and have him come out and train Lexi to behave. He was here once before and always said she was a willful pup; I hate to break her spirit but she needs to learn to behave before I break my spine. Before he comes, I am trying to train her myself, with a very short leash and many clicking sounds.

I can always go back and get another Fribble but I can’t afford to be falling anymore. I love my dog, returning her is NOT an option. (You know who you are who suggested this) She is now sleeping on my bed, keeping me company but I do need to train her so she doesn’t pull so much. I have tried every leash in the universe. Lexi, you’re a cute puppy, but I have never met a stronger, more willful puppy anywhere. Even my friends agree that you are incredibly strong for one so young. I’m hoping you will mellow and I know you will be a great dog. You are now seven months and yes, still a puppy. When exactly do you become an adult dog and calm down? For my part, I will try to do some strength building exercise slowly, I promise. We’re in this together.

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