Monday, February 28, 2011

Oh the Guilt!

On this particular morning race training starts at 10 am. I woke up so tired. I tried to stay in bed a little longer but just couldn't sleep anymore. I went through my morning ritual, but I couldn't shake the lethargy. My limbs felt heavy and leadened.

I gathered my gear together anyhow and loaded it into the car. The morning was spring-like. The air damp and on the verge of a drizzle. I walked back into the house and grabbed a rain jacket, just in case. In the short time it took me to get my jacket, the mist had turned into a steady light drizzle. The fatigue won out. I went back inside.

Then the guilt began. "I'm tired. Take advantage of this time and get some rest." I tried to tell myself.

I sunk into a comfortable chair. Emma, my black cat, snuggled on my lap. I drifted off fitfully. My dreams were unsettled. I should be doing more purposeful things. Was I really tired or just using the fibro as an excuse for laziness? My fibro is acting up, that's why I'm not skiing well. Suck it up, you should be training.Outside the rain increased in intensity. I reassured myself.  "It's okay, better to be home than cold and wet."

I drifted in and out of sleep a little longer. Then I awoke to bright sunshine. Amazingly the lethargy lifted with the clouds. I was ready to ski. I grabbed some lunch and headed out. Was it the fibro? Was it all in my mind? The tricks the fibro plays.

Friday, February 25, 2011

The Responses!

Thank you to everyone who is reading my blog. I just want you all to know that I don't find myself sad about fibro. Actually, that has never occurred to me. It is an annoyance and inconvenient sometimes. I get irritable and depressed sometimes, but so does anyone who suffers from chronic pain or stress. Even if it isn't chronic, an unexpected injury or a life-changing event like divorce or death of a loved one can cause the same reaction. Everyone has something that restricts or hurts them in some way. Everyone has obstacles to overcome. 

I have had a particularly stressful year, and this book is inspiring me to try and turn my life around to be the way I want it to be. I have already done four interviews. As I get the chapters written I plan to put excerpts of these in the blog. This whole project is really motivating and uplifting. I hope that those who know me understand that I am not suddenly weak and debilitated and an object of pity. I am the same person I was before they saw the blog.

I think this next year is going to be very interesting, and I really hope it lands a book contract...because I could really use the money! More than anything else, I hope others who read this book find comfort in knowing that others have these issues, be it fibro, CFS, rheumatoid arthitis, lupus, or a myriad of other chronic and sometimes debilitating diseases. We all suffer in the same way, even if the symptoms are different. We all have great, uplifting days, but we also have our bad ones. We have survived them before, and we will survive them again. We are strong, and knowing that there are others going through the same things or maybe even worse, who overcome the odds, and live happy fulfilling lifes is awe-inspiring.

Thursday, February 24, 2011

Post Flare

I'm having a pity party for myself (I haven't used that term since high-school). I'm angry at the fibro, I am angry that I am not stronger. I am angry that I did badly in my race tonight. I feel tired, weak, frail, and alone.

My Disclaimer

I just want to say that I am NOT a medical practitioner. With this said, the comments that you find in my blog are about my experiences with fibromyalgia, and my take on what is happening to me and how I deal with it. Everyone is different. There may be a medical expert out there who somehow feels that people with fibro don't feel the way I do. I couldn't say. I don't know how others feel or how their symptoms manifest. I know how I feel.

Wednesday, February 23, 2011

The Flare

Fibromyalgia is very controversial. Although it is finally being accepted by the medical community, there are still many doctors who don't believe in it. There are also many people close to the sufferers who don't believe in it because the victim doesn't look sick.

I found it amusing recently when a friend asked if I was going over to a local bar as we were exiting an event. I replied, "No, I haven't been feeling well."

He responded, "your color is good." I guess like a dog with a cold wet nose, if your color is good, you must be healthy.

I too have had my doubts about fibro. Sometimes I wonder if doctors lump everyone who has an ailment they can't diagnose into this category when they can't find anything else. When I feel good, I have trouble believing I suffer from fibro. It's such a nebulous syndrome. But, when I have a flare, I believe.

The Flare

After six days, I finally have an appetite. I am treading carefully though. I mistrust food. One wrong bite and the fire might return to my belly.

The flare crept up on me stealthily. I felt drained after my race on Wednesday night. A throbbing numbness radiated from my right wrist to my right shoulder. The pain made me slightly queasy. I chalked it up to hitting a gate and fatigue.

Thursday morning I dragged myself out of bed. My arm had quieted down, but my body was slow and cumbersome, my limbs heavy. I was determined to train that morning. A friend was setting slalom, and I hadn't trained slalom in a long time.

The snow was perfect. The sky was a bright, crisp, clear, Colorado blue. How could I feel bad on a day like this?  Afer a couple of runs I commented to a friend, "I forgot how much more energy slalom takes."

My body was being abused. Gates swatting my knuckles and repeatedly hitting the spot on my knee above my shin guard. I'd have some bruises today.

Then my tip hooked a gate. I spun slowly to the ground. One ski and I went down the hill. The other stayed up. I stopped my slide, but the ski sliding with me had its own plans and kept going.

Checking the course to make sure it was clear, I plodded up to the first ski and picked it up. Then, more sliding than walking, I worked my way down to the lower ski. Other skiers can slide gracefully down on their boot heels. Me, I lumbered.

I laid the skis parallel to the slope. I tried to step into the downhill ski, but it just wouldn't hold. I'd step down. It would topple sideways and skitter away. Exasperated, against common sense, I put the uphill ski on. The binding cleanly snapped closed.

Once again, I tried to be the graceful skier and rotate so my uphill ski was downhill. I couldn't seem to control my limbs. I started side slipping down the hill. Being right under the lift, I'm surprised the others training weren't heckling me.

I gave up trying to turn and continued my battle of stepping into my downhill ski. I was already tired and becoming frustrated. I stared at my bindings, but couldn't figure them out. Do you push up or down to get in? A hazy fog had settled on my brain. I ski almost daily in the winter, and I could not work my bindings. After many tries the fog cleared for a second. Down my brain said. I stepped in, and sheepishly skied to the lift.

By the end of two more training runs, my lower back ached. Skiing never bothers my back, but I was finding it difficult to straighten up. A band of fire stretched from hip to hip.

Slalom, I thought. I am tense because I haven't done slalom for so long. I switched to the giant slalom (GS) course. I'll loosen up on a couple of GS runs and call it a day.

The runs didn't aggravate my back, but it was still painful to straighten up. The base of my spine was burning, and the flames licked to each side equally.

I decided to call it a day and packed up to leave. I went to the racks to pick up both pairs of skis. They are heavy skis, but I've carried them many times. I hoisted the one pair to my shoulder. Balancing it, I lifted the second pair. Adding insult to injury, one ski in the pair slipped forward, and the binding punched me in the cheekbone, just below my eye. Grrrr....

I made it home and started thinking about lunch. Normally, I'm starving after skiing. But curiously, I had no appetite. My back hurt, and I was bereft of energy. I nuked a frozen meal and struggled to eat it.

The attack had surged. My brain was fogged, my back was burning, and all my limbs had become heavy and achy. I curled up with a heating pad and some Tylenol.

By bedtime the flare was full-blown. My period started and my entire gastrointestinal track joined the fray. My guts were on fire. Ingesting any food was akin to pouring acid straight down my gullet. My hips hurt, my elbows hurt. Every part of my body hurt.

Tuesday, February 22, 2011

My First Post

This is my first blog entry ever. Although I've been a technical writer for many years, I have never been interested in keeping a journal. What changed my mind? The book I'm writing - Portraits of Fibromyalgia.

In Portraits of Fibromyalgia, I wish to paint a picture, both verbally and pictorially, of those of us who suffer from fibromyalgia. This book is not the typical description of diagnosis, symptoms, treatments, and so on. Nor is it a self-help book that delineates step-by-step how to fix the problem and improve your life. Instead it is a means of providing empathy and awareness for a syndrome that is difficult for others to understand.

Originally, I just planned to write a chapter that was my self-portrait, but I never liked what I wrote. It seemed dry and uninteresting. Then recently I had a flare, and it occurred to me to chronicle my struggles with fibro as I write the book. I plan to use this blog to do so, and eventually some of the material from this blog will serve as transitionary elements between the interviewee's portraits.

I am excited to say that though I only started this project in late November of 2010, I have already lined up twelve volunteers and interviewed three. I am learning so much, and meeting some very interesting people. I hope you will follow me on my journey.