Anyone who has followed this BLOG or who knows me personally is aware of my battle with intractable migraines. I have not discussed fibromyalgia here in any detail. For a very long time I didn’t feel I should even identify myself as someone with fibro. I have friends with fibro and have read the work of others living with fibro that is so invasive and debilitating that the few symptoms I had that led to my initial diagnosis many years ago felt insignificant. It felt like an insult to those who had “real fibro” for me to claim to be affected by it at all. About six months ago, all of that changed.
Fibromyalgia is a progressive condition (a syndrome rather than a disease) that affects “an estimated 10 million people in the U.S. and an estimated 3-6% of the world population” according to the National Fibromyalgia Association. That’s a lot of people in a lot of pain. But a large portion of those suffering from fibro go undiagnosed or misdiagnosed for years. The symptoms mimic those of many other conditions and there are still many in the medical field who refuse to even recognize fibro as a legitimate or real condition. Thankfully its recognition and thus its treatment has been rising steadily over the last decade.
I have no idea how long I’ve actually had fibro, because there was so much overlap between my fibro symptoms and those of my migraine condition and the side effects of several of my migraine medications. I was diagnosed with it about 7 years ago. At the time my symptoms were relatively inconspicuous. The most bothersome of any was the pain that was caused by even a light touch on my arms. My boyfriend would put his arm around me and rub my arm gently and it felt as though he were digging his fingers in as hard as he could. That seemed like small potatoes. It was nothing compared to what I dealt with from my migraine condition and nothing compared to what I knew others experienced from fibro. If you’ve read Mary Gelpi’s incredible blog, Fibromy-Awesome, you know exactly what I’m talking about.
So what changed? Some of the symptoms from my migraine condition eased up after my neurostimulator implant surgeries (the Reed Procedure). I am on fewer medications than I have been at any other time in the last 13 years (only 16 a day! Woo-hoo!), and consequently dealing with far fewer side effects. Seemingly out of nowhere, my body turned alien. I started waking up with my hands so swollen I couldn’t make a fist. My legs and feet swelled so much that from the knees down I was a clone for someone 9 months pregnant and ready to burst. Many mornings my entire body is so stiff that merely getting up out of bed requires a series of countless tiny movements to stretch and ease the tension in every joint and muscle. Days of exhaustion so severe that I cannot do anything that is not an absolute physical necessity have become common. One day the joints in my left thumb were so painful when I awoke that it actually felt broken. My right wrist started intermittently hurting enough that I thought I must have started sleep walking and done something terrible to it. All of these symptoms and more. Apparently out of thin air. Some of them I recognized as fibro right away; others I had no idea could be part of this condition that I had essentially been denying I had at all for nearly a decade.
I was frustrated. I finally made a bit of real progress with my migraine pain for what? To swap it out for increased fibro pain? What in the world had I done to deserve this? It seemed so unfair. Then another thought occurred… what if I had had to deal with all of the fibro pain on top of the worst of my migraine pain? What if this sudden explosion of symptoms had occurred not following the surgeries that alleviated one condition, but had coincided with the onset of my intractable migraine? Could I have survived it all at once? Maybe this wasn’t the least fair thing in the world, but the greatest stroke of luck. Perhaps I should thank God and all my lucky stars that this is happening now, and not years ago when the pain in my head nearly drove me to take my own life.
I have lived by the saying “everything happens for a reason” my whole life. I believe it with every fiber of my being, even when it makes me curse whoever is in charge and when I know there is no way I will ever understand the reason. I do not believe in coincidences. I don’t believe in random chance. I have never been a religious person. My family identifies as Protestant, though we never attended church regularly, and only sometimes on Christmas and Easter. I attended Mass with my best friend as a child periodically. Her family was deeply religious (her father was a former priest). Mostly we giggled and whispered and got in trouble. I have, however, always believed in what some people refer to as God. I have always believed that our souls exist beyond the life of our bodies and that there is something somewhere greater than us all. It has been, at times, an internal battle with the scientist in me. I believe in evolution. No man in the sky created all that is in a week. But I look around the world and I find it impossible to ignore that everything is connected. There is nothing that happens in a vacuum or that does not have an effect that reaches far beyond what we can see.
A few years back on a trip to Grand Bahama Island to visit my father, I stood in a coral cave staring into a pool of fresh water sitting atop salt water. The experience was overwhelming. I found it nearly impossible to leave or resist returning once I had. The way the light came in through the collapsed ceiling where the less dense coral had eroded and eventually given way was amazing. It bounced around beneath the water’s surface making it nearly impossible to tell reflection from surface. The depth was impossible to gauge. The colors were more beautiful than any I had ever seen. It was, and continues to be one of the most awe-inspiring places I have ever been. For me, it was a deeply spiritual experience. My father asked how my trip to the cave was and I told him (after several days of discussion about religion) that the cave was my church. I don’t need a building in which to worship. I don’t need a man to tell me what God says, or to be my messenger. If I want to talk to God I’ll do it myself. I don’t mean that to sound offensive; it’s simply what I believe. My relationship with God does not require any middleman or cathedral.
I know it seems I have gotten off course here with this discussion, but to bring it back around – what I have realized is that I don’t have control over the fact that I have intractable migraines or fibromyalgia. I didn’t have a say in when they started or how significantly they have affected my life. I could allow myself to become bitter and angry that when I started to experience a small amount of relief from one condition, the other flared up with an intensity I had always been grateful not to have experienced. But I choose not to do that. I choose not feel that way. I choose, instead, to be grateful. Grateful that I have not been dealing with fibro at this level for all of my life, or for the first 12 1/2 years that my migraines were completely unabated. I choose to believe that this series of events has unfolded in ways that I might not understand, but are not without reason. I choose to believe that even if I am meant to experience both of these conditions, something greater than us all protected me from experiencing them both at the same time in ways that were more than I could handle.
For those who know me best, much of this discussion will come as a shock. The girl who has studied and worked in the sciences going on about God and spirituality will seem a giant contradiction. I have spent years being critical of those who are deeply religious. Catholics, in particular. The “word of the Lord” as written in the Bible has been at the very heart of many a heated discussion with those who try to use God as an excuse for hatred and bigotry. But we all have a right to our opinions and our faith. That does not, however, excuse any harm we inflict on others in the name of religion or spirituality.
I will conclude with this…a thank you to my mother who gave me a book of daily devotions (Jesus Calling by Sarah Young) that I would never have picked up on my own. She handed me her copy in the midst of a very dark moment when pain and fear and exhaustion were getting the better of me. She didn’t read it to me or insist that I read it. She simply left it by my side. Since then I have read it every day. While some of what is said in this book is at odds with what I believe, the messages, for the most part, have been not only comforting but kept me from falling into weak patterns without purpose or constructive thought. I will leave you with one of my favorite passages that zeros in on something that is both difficult and essential for everyone with a chronic illness;
“When you are plagued by a persistent problem – one that goes on and on – view it as a rich opportunity. An ongoing problem is like a tutor who is always by your side. The learning possibilities are limited only by your willingness to be teachable.”