Fibromyalgia is not the easiest chronic disease with which to live. It is also not the most difficult. Point is, fibromyalgia is real and it is no picnic. When you are surrounded by a bully or two, it's even more difficult. Yes, fibromyalgia is real. It's the name someone came up with for the symptoms when there was no other name. I suppose I should say, the symptoms are real. I know because I suffer from quite a few of them. Though not nearly as badly as some other folks I know. And I'm quite grateful for that because if mine isn't that bad, I'd hate to know what the bad cases are like.
For those of you who don't know, fibromyalgia is characterized by:
- restless sleep
- serious morning stiffness
- terrible headaches
- tingly and numb hands and feet as well as pain
- memory loss and foggy thinking
- tender points which make touch painful
- widespread pain throughout the body
- awakening feeling tired
- chronic fatigue
- anxiety
- depression
- disturbance in bowel function
- sensitivity in all five senses
Not a short list. I have, and still experience, each of the symptoms listed above. It's exhausting. You can imagine what getting up every day of the week to go teach elementary students was like. Some mornings weren't that difficult. But you never know how you'll feel or how the day is going to go when fibromyalgia is your partner.
Having to go to school every day was both a blessing and a curse. A blessing in that it made me get up and go regardless of how I felt or the level of pain on any given day. A curse because it made me have to get up and go regardless of the level of pain on any given day. It's not easy to go and be your best when pain is screaming throughout your body. But I also tried to keep everything in perspective. I may be living with chronic pain but I am not suffering from a disease that can have fatal results. For this, I am grateful.
Am I looking for sympathy? No. I hate being pitied and I hate being the center of attention. I am not a fan of attention of any kind- good or bad. I don't play the victim. That's why a lot of people have no idea that I even have fibromyalgia. Another reason most are unaware is because of the fact that some of those who do know are not always kind. I've been called lazy and stupid so many times I have come close to believing it. Close. But there is enough of me to know that I am neither. I've been told I hate fun and that I hate my job. Nope.
I cannot walk into a store where perfume is sold because the smells burn my nose and I can taste it just from smelling it. This leads directly to a headache. Same with being around people wearing perfume. Or smokers. UGH. So, I have to be careful where I go and how close I stand to people. Loud noises can reduce me to tears. Putting on lotion (whipped coconut oil) can hurt as does brushing my hair from time to time. Bright lights cause me to close my eyes so I'm careful about driving. None of my soaps or shampoos etc. can have chemicals in them. Life is interesting.
Those of us who suffer from fibromyalgia are not lazy. We do not hate our jobs. We are not social introverts. We do not hate fun. We are in pain most days and we have no energy. Everything affects us in a painful or uncomfortable way from bright lights and loud noises to a gentle touch to just standing up or sitting down.
I have lived with fibromyalgia for 16 years now. Unfortunately, I've noticed that it has gotten worse over the years. Not horrible, but worse. Or maybe I'm not as good as faking it these days. There are times I forget I have fibromyalgia and I drive myself crazy trying to figure out why I'm so tired or why I lack motivation or why everything hurts. And then I remember, it's fibromyalgia.
I didn't cover as much as the tip of the iceberg, I'm sure. However, getting information out there is helpful no matter the amount. Next week, I'll share what I've found helps me deal, when I deal. And that's another thing about fibromyalgia. It can zap you of your energy and motivation to the point you just do not deal with it some days. There are some things, however, that do take the edge off and I'll cover some of those next time.
