I have sat for nearly an hour struggling to find the right words, or any words at all, to fill this page. I struggle most with the idea that some may think I am seeking sympathy or pity, that is not at all what I want. Secondly, I struggle to accept that there are those who still believe Fibromyalgia is a fictitious disease; made up by the weak and lazy. This couldn't be farther from the truth.
Fibromyalgia is an incurable, beast of an illness that not only effects it’s patients physically, but also mentally and emotionally. It's a daily struggle for those inflicted with this diagnosis and for those who are closest to them.
Below is a previous post, written several months ago, about my journey living and dealing with Fibromyalgia. I hope it bring awareness and knowledge about a disease that's mostly ignored or pawned off as a non-issue.
I’m not a morning person, never have been. My attitude and appearance are reminiscent of what you'd image a bridge troll looking like. This is likely do in large part to the fact that I can’t tell you the last time I slept through the night. I wake up 3 to 10 times, sometimes for a few seconds and other times it’s for a half hour at a time. How I wake up is another story...
Sometimes it’s falling off a cliff, other times it’s getting hit by a bus. Once I even fell onto a board of nails during a circus act. It’s amazing the way your brain can conjure up different methods to alert your unconscious self that you’re in physical pain.
Not that it matters how well I've slept or not slept, with Fibromyalgia I've also found a friend called Chronic Fatigue syndrome so sleeping and waking up rested never happens. Lacking restful sleep, and not being a morning person in general leads to one very important fact, if you ask me a question before I've had an opportunity to trap the bridge troll and replaced it with a unicorn (or a hot cup of tea) you’ll get grunts and mumbles…if you’re lucky.
I was diagnosed with Fibromyalgia and Chronic Fatigue when I was 20. It took several different doctors and a battery of tests before I was officially given a diagnosis, not to mention an array of weird or rude doctors.
I'll never forget being asked to do a back-bend in the exam room. This Rheumatologist thought he could better "assess my pain levels" if I performed this task. The look on Tim's face was priceless.
Amongst the wack-a-dos I also had to deal with the nay-sayers who told me the pain was all in my head. There were also those who thought they had the answers to cure Fibromyalgia. I've tried just about everything out there; gluten free diets, massage therapy, different types of exercise, vitamins, herbs, and of course medications. Some medications did help to elevate the pain, but the side-effects were awful and staying on them just wasn’t an option, at least not for me. Other treatments help, but I've accepted that I will always be in some type of pain.
My unicorn will always have an ace bandage on his leg or a band-aid on his magical horn. That's just the way it's going to be and I think I have done a pretty kick-ass job of dealing with it and not letting it stop me from living life. I work full-time, run a small rescue, write this blog, take care of a household all while dealing with the everyday aches and pains that have become a part of my normal.
I don't know why I find it so much easier to share my infertility struggles or my journey through miscarriage, yet I seem to hesitate sharing this part of my life. Perhaps it's because there's still a lot of stigma surrounding the disease. Some people believe the diagnosis itself is poppycock, just an excuse for someone to be lazy or gain sympathy. Some just aren't open to the possibility that outward appearances can be very misleading. Underneath the smiles and pretty clothes there can be a lot of physical pain, a lot of turmoil. Trying to force someone who just doesn't want to understand, or isn't open to the idea of something they can't relate to, it's just not worth the struggle.
So what does all this mean? Well, it means that sometimes you may run into me at the store and I'll be a happy, chipper and well dressed gal. We could carry on a conversation and you'll think nothing strange of the encounter other than I probably said something a little silly or unorthodox (that's just the Black Crayon in a Box of Neon Colors) and we could depart with a quick hug. Other times you may run into me and I'll be wearing sweats and seem a little...lost. It's Fibro fog and it happens more often than I'd like to admit. The inability to focus or concentrate on any one task without sincere effort. Like a bird that just flew into clean window, shook off and proceeded to fly back into the same window simply because they forgot they already tried that route. I might shy away from a hug and go for an arm rub instead because a squeeze around my back would feel like baby knives making chop sushi of my insides.
I don't let it control my life. I could, but I don't. I play volleyball, I go for long walks, exercise, mow the lawn, swim, etc. I refuse to let what others view as a handicap or a fictional illness keep me from living my life. While I know there are those out there who take advantage of the diagnosis, who play the victim, that's not me and I don't want to be judge based on something I didn't ask for nor do I have any control over. Sure, I have days when I move like a 90 year old and days when a long walk looking for sheds with my husband aren't a good idea, but I also know that sitting around feeling sorry for myself doesn't do anyone any good, including myself.
If you know someone whose been diagnosed with Fibro or hear of someone who has it just try to remember these things: