This past Sunday my husband and I were blessed to see a familiar face from his seminary days. A friend and member of the church we attended in Louisville spoke at our church here in Detroit creating a comforting sense of God’s sovereignty. After the service was over my husband and I, along with our two children, stepped up to speak to him and before I could say anything, he looked intentionally into my eyes and very sympathetically asked, “How are you doing?’ And I knew what he meant. That question has come to be a lot more specific to me over the last year…it has come to mean more to me when I speak it and when I hear it. It has refreshingly come to actually mean something instead of just a casual way of offering greeting. But at the same time, it has connotations of offering sympathy that I have never been good at accepting. And I knew what he meant by asking…his wife had read my blog posts about my health (probably back in the days when I was scared of what was happening to me)…but now that I am much more informed and much less paranoid I can finally offer somewhat of an answer to the question “how are you doing?”
For once in what feels like my entire life, I actually feel good. The first visit to my doctor here in Detroit produced the answers I had been searching for over the last three years. After feeling weak, exhausted, wracked by pain and infections…wondering what is going to be okay to eat and what is going to make me feel sick…after two failed surgeries…after nausea and dizziness…and not being able to be touched by the ones I love most…I finally received the news I refused to accept before. “I would like to explore the option of fibromyalgia…” I had run from that statement, done everything I could to find some other answer but the moment I heard a doctor finally say that I felt such relief. “There are medications I can give you that would help tremendously…I really think I can help you feel a lot better.” And finally accepting what I had been running from gave me the chance to actually start to feel better.
I had such terrible misconceptions of what fibromyalgia actually is…and from what my doctor told me, most medical professionals still remain stumped by it. I had never known anyone with fibro…so I just categorized it as a kinder way to speak of hypochondria. I imagined it as a doctor’s way of telling me that I was making everything up…that none of my ailments existed but they could drug me to keep from thinking about it so much. I thought of it as a label that if accepted, would just portray to everyone that I was lazy, weak and anxious. And because it is incurable, I thought there was nothing that the doctors could do for me. But through the last year, my eyes have been open to the truth about this troubling condition.
I already knew people who had fibro but was completely unaware of their condition because they were some of the most active, friendly, hard-working people who you would never hear complaining about anything….especially their health. I was shocked to know that my husband’s mentor, a pastor we had known for years, had been diagnosed with fibro long before we knew him. He is such a humble and patient man…never speaking of himself, never complaining, never wanting focus to be on him. I was encouraged to know that the woman at our church who I looked up to as such an energetic and vibrant person…very active, and such an ongoing presence of encouragement to others in the church also had fibro. The people that I pictured as such selfless, active, and strong would never have been the picture of fibromyalgia in my head.
But now I know better…now I know it is a syndrome characterized by pain accompanied by mood, sleep, and mobility issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. The answer lies deep in your nerves…somewhere that is really hard to study and run tests on. Fibro is more than what a doctor can messure…but the pain is there and anyone that has experienced this problem knows how true that is. And now that I have been educated and had my stereotypes stripped away…I am on a medication that has helped tremendously (when my insurance will give it to me….but that’s another story). I have found that the person I had always been didn’t have to be someone I would never know again…I could be the active, involved, happy person I once was.
But I’ve also learned that it’s okay to have bad days…and it’s okay to admit it. Fibro is unpredictable and frustrating. I’ve tried to explain it to other people but I feel like no matter what examples I use it just doesn’t capture how I feel. I’ve described it before as the feeling you have when you get a really bad tooth ache…the pain is in your tooth but it makes it hard to concentrate on anything else. When the pain is bad, it’s hard to even put together sentences so you just end up saying nothing. You feel irritated and annoyed about every little thing because the pain keeps you on the edge. Often times I try to explain it like when you are wearing a really scratchy sweater….but on every part of your body. I just want to get out of my own skin. And sometimes I feel like someone has beaten me all night while I was sleeping. And sometimes it feels like my head is full of fog…somedays the fog is thicker than other days. The comparisons could go on and on…but still not really explain exactly how I feel.
So, since I’ve given you the run-down of how I actually feel…the next time you ask me “how are you doing?”….I can give you the short answer of “good” and you will know what I mean.