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.