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.

Carry on Tuesday: My Favorite Things

Daffodills in St. James', close

Daffodills in St. James’, close (Photo credit: existential hero)

Don’t you know that it is human nature to be able to list the worst memories in your life more easily than it is to remember the best ones? Why is that? Why do we all remember, more clearly, things that we don’t like at all instead of all the things we do?  Maybe because sad things leave us scarred emotionally, we remember them because they wound us like a deep cut into raw flesh. Your skin is deeply cut, blood seeps out, you’ll probably have that scar for the rest of your life and it will remind you, forever, of what happened to cause that pain.

When I am feeling lonely or blue I try to think of peaceful things, the things that make me happiest, my favorite things: the ocean, dogs, collecting seashells while walking on the beach, the mass of yellow daffodils that come up once a year in the same place in my neighborhood. This year I only saw the start of the meadow of yellow flowers, when they barely started to bloom. It rained every day for a week after that, it wasn’t an auspicious start to summer.

It is harder for me to remember the happiest days than the worst days. There have been moments of magnificence in my life, with my husband, certainly the birth of my two children, but other than that, my head is cloudy. I can’t blame everything on Fibromyalgia,or Fibro-Fog as we call it. I don’t think I could have come up with this before anyway.

Perhaps tonight I’m steeped in self-pity, oh yes, now I know why. I just figured it out. The great unconscious, the biggest moment, months, years of grief: the death of my father. Father’s day is two weeks away. It gets to me every year around this time and every year I forget. How on earth could I forget that my father is dead? I know he is dead. What is wrong with me? Every year since his death, eleven years ago, I still go to the Father’s Day section for cards, or this year I picked up a new pen that I knew he would love, forgetting that there was no physical him anymore. I guess I will never stop doing that.

I will make a concerted effort to continue to think of past, happy, moments and will jot them down. The word “magnificent” sounds like an over-rated French movie. I’ll stick to happy but the point is, my memory can remember the pain first, the pleasure, second.

For all those women* who do not have a Father on Father’s Day, this is for you. I know how you feel, from my broken heart to yours. Do whatever you can to make your own life a little easier, a little happier, whatever it takes. Or honor your dad with a special memory or flowers, a drink, anything to help ease YOUR pain. Buy yourself some chocolate or ice cream or both. I feel for all of us, I really do.

*should say women and men

Father's Day 2009

Father’s Day 2009 (Photo credit: Paul Allison)

Haiku Heights – Cacophony

Wind through the Wheat

Wind through the Wheat (Photo credit: David Kingham)

Birds tweet, winds thunder

Seasons fight with noisy swords

Silent depression.

*

Baby crying raw

Dad screams in  red-hot anger

Sandpaper

Sandpaper (Photo credit: ArtByChrysti)

Blue plates thrown, splinter.

*

Ocean spray whistles

Sand paper’s scratchy surface

Two lovers kissing.

crying-baby

crying-baby (Photo credit: bbaunach)

Haiku Heights – Storm

Winter Storm 2009

Winter Storm 2009 (Photo credit: merfam)

Inside turmoil spins

I want a piece from two worlds

Red: Life. Gray: Shelter

*****

Ocean waves explode

I am insignificant

Take me over, please

*****

Red rage, fury, fire

bolting out the hostile door

releasing the storm.

*****

Ice cascades through snow

the beauty of pureness, white

black ice underneath

*****

Snow fighting ice, wind

Let’s huddle together now

to seek warmth, safety.

What if I just kept Driving? (Writing Raw Prompt)

THEBIG429 Cadillac photo group Cadillacs in th...

THEBIG429 Cadillac photo group Cadillacs in the rough photo group (Photo credit: Wikipedia)

What if I just kept driving and didn’t stop at the supermarket like always. What if I went past the county line and the library and the big grocery store in the next town and I didn’t look back. What if the old Cadillac was filled up with gas and I was the only person in it with no plans and a full tank and a pack of peppermint gum. I had cigarettes in my handbag, some money in my wallet, and I just followed the signs to whatever seemed like a fun sounding town.

I had no idea where I was heading. Lord knows I had NO sense of direction but no one was going to make fun of me here or tease me about it, it didn’t matter at all. I couldn’t get lost because I didn’t know where I was heading in the first place. My husband and the two kids criticized my driving and my lack of a sense of direction ALL the time, they got so nasty about it I just refused to keep driving with them. Why bother when all they would do was laugh at me? I didn’t need that, not all the time, anyways.

Maybe they would feel a little lost on there own when I wasn’t home fixing up their meals and arranging their music lessons and get togethers with their friends not to mention the PTA library fair and keeping house and grocery shopping and preparing three, sometimes four meals a day.  Let’s see who they criticize now.

I knew where I was heading, to the only place I loved, to the place where  a girl could relax and feel overpowered at the same time. I bet you know where, if you know me at all. Right. The ocean, why I have loved the ocean since I could walk and toddle on the sand. When my mama and papa would hold each one of my hands in theirs and swing me over the waves until I learned to do it myself. I would sit on the rocks and stare at the almighty ocean with it’s bursting fire of waves and splashes of that foamy soap on top. I loved to watch how far the tide would come up to meet the sand, I walked for hours picking up seashells, even the broken ones were pretty, to me.

It took me seven hours to get there because I really didn’t know my way and I am sure I got turned around more than a few times but I got there alright. On my own without asking anybody anything. I wonder what George and the kids would feel when they read the note that I left under the orange juice glass on the table. It didn’t say much, just that I was leaving for awhile, and they should take care of each other. I signed it, Love, Mom because I would miss my two boys but in my heart I really wasn’t sure how much I would miss George. I had been with George for over 22 years and yes, part of me still loved him as the father of my children, that would never change but part of me wanted more than he was capable for giving and I knew that. It was a choice I had to make. Do I settle for the known or do I throw everything away and start fresh? That was the reason for this trip, it would take some time to sort through it all, I knew that.

Simple Pleasures

English: Fireplace. For more translations SEE ...

English: Fireplace. For more translations SEE BELOW (Photo credit: Wikipedia)

I like walking on the beach and collecting seashells. I love watching the ocean, any time of year. Sitting in front of a fireplace watching the orange flames flicker and dance in front of me; I sit so close that I feel the warmth of the fire on my cheeks, safe enough not to get burned. Familiar music playing that I sing along to, I used to burn candles but I don’t do that as much anymore. It used to be comforting and pretty but I’ve outgrown that. My dad used to buy me a candle for my birthday every year. Since he died eleven years ago, my mom and my sister try to do that, it’s so sweet but not the same. I love their intentions though, I appreciate it.

I’m looking forward to the special sweetness of a pit-free clementine, the happy, simple snack that I can just grab and peel. That is one easy part of the winter that I like. The winters are long here, way too long for me so I try to think of specific things that make it better like my home-made pea soup with smoked ham pieces and plenty of carrots so that it has a smoky-sweet taste. Or my home-made chicken soup that comforts us when we have colds and feel like eating nothing else. Our son used to crumble up Saltines by the handful and throw them into the soup so it was thick, the consistency of gruel but tasty. In the winter, I drink hot chocolate, in a steaming mug, sometimes with marshmallows for an extra treat and I bake my famous banana bread, with chocolate chips and raisins. I bake it for three out of the four cousins; my daughter will not try it.

I like having a flashlight right beside my bed every night and a tissue clutched in my hand. On my bookcase, along with many, many books I have photographs of my son, my daughter, my dog Lexi, and our deceased dog, Callie. There is our informal “engagement” picture of my husband and myself grinning so happily at the world. There is a basket of seashells that I collected from Florida and Rhode Island that I play with every now and again. I look at them all the time. Our dog, Lexi, lies on my bed, across my legs and sighs deeply and happily.

I have an anxiety disorder and recently I was so lucky to find a Psychiatrist who is lovely and gracious and someone who will not just dole out anxiety medications but will talk and listen. I told her today I picture her and her assistant as Glenda the good witch, all pink tulle and smiling eyes. I do not take this lightly having seen a couple of really creepy people. This is something I hold special in my heart, that there are still a few good people on earth, that do good things, whether you have the money or not. They will work with you to figure it out, there ARE a few people to believe in. I am grateful for you; thank you for helping me believe that there are good people left in the world. I am grateful and blessed.

Dedicated to M.E. and B.

Haiku Heights-Green

A Thick Forest

A Thick Forest (Photo credit: Jon Person)

*Envy steals the soul

Gripping, stomach shooting, pain

Life lost in the past

****************************************************************************************************************************************

Forest, milky dew

Inhaling fir, musty leaves

Crisp apples of sun

****************************************************************************************************************************************

Ocean, sea of lights

Tumbling green, gray-blue colors

Looking for lace foam.

****************************************************************************************************************************************

*Dedicated To Tammy Spice, who once had a doctor that destroyed her life. I wish I could take the pain away from you. Please keep on fighting.

Haiku Heights: STARS

English: Mother with child; Oil on canvasC...

English: Mother with child; Oil on canvasCategory:technique with mounted parameter (Photo credit: Wikipedia)

Kiss, touch, clutching hands

Nurture, discipline, move back

Moms, eternal love.

DEDICATED TO ALL OF US WHO ARE MOMS OF CHILDREN OR FUR-CHILDREN OR BOTH.

***********************************************************************************************

Intangible light

green, octopus tentacles

Swirling, white foam dies.

*********************************************************************************************

Sprinkle pixie dust

magical, enchanting gold

Shine your lights within.

Plinky Prompt: Beach or Pool?

    • Going For A Swim
    • Beach Girl
      Ocean Wave Beach. The feel of the sand under my feet, walking slowly in the sun, looking for seashells. The thrill of the ocean (and the fear of the sharks) jumping over the waves, being a part of Nature. Sure, it is a little risky, it’s a little cold but there is no better feeling for me than diving under a huge wave and jumping over the rest; knowing when to jump and when to swim. It’s always held power over me, I love swimming and walking on the beach. I love watching the waves as they crash. My biggest dream is to live near the ocean. Someday….
    • Previous Answer

Plinky Prompt? Which two favorite far apart cities do you wish you could move close together?

Orange Tree

Orange Tree (Photo credit: amycgx)

  • Which two cities do you wish you could move right next to each other? See all answers
    • Favorite Far-Apart Cities
    • California Dreaming
      New Yorker Hotel building from below

      New Yorker Hotel building from below (Photo credit: Wikipedia)

      orange tree New York and California

    • I grew up in NY and still live here but have always wanted to live in California. Part of my heart will always live on the East Coast but part of me longs to live on the West Coast, on the water. I can’t take the winter weather in NY, but the fall and the spring are magnificent. Likewise, I’d like to be near the ocean or any body of water during the summer (or ALL the time if I could).  If I could live in both of these states, I’d be an incredibly healthy and happy woman. I’m too laid back to be a New Yorker and too impatient to be a California citizen, I need STRONG coffee (NY) but love the salad bars in CA. Bagels are a NY MUST, as are egg creams. But imagine, having a lemon or orange tree growing in your back yard in California……to me, that would be like living in a dream.
    • Previous Answer