Imagine a time when you’ve had the flu. The horrible achy, ‘OH my gosh I want to die’ type flu. That’s FMS on a good day. Wikipedia describes it as “a medical condition characterized by chronic widespread pain and a heightened and painful response to pressure.” I’ve had it described to me once as my body being a radio and pain being the volume. Most people have a normal volume of pain so to speak. But for someone with FMS, it’s like having the volume turned up as high as it will go. A fun jab to the arm is excruciating for me. Activities I used to take for granted, I can no longer do. Simple tasks as fixing my hair can be hard on a bad day.
When I was first diagnosed, I was relieved to finally have an answer. I wasn’t going crazy; it wasn’t all in my head. But then the long haul of countless doctor visits, trying different medicines which made me sick or hurt worse, began. It was depressing. I felt my chance of a normal life was over. If this was all I had to look forward to….I didn’t want it. I cried a lot in those days. I realize now what I was going through is a normal process. I was grieving.
People with FMS don’t tend to talk about it much, except to people we really trust. We’ve all had someone tell us it’s all in our heads, it’s just a made up thing so the doctors can get insurance money, and so on. That’s why when asked how we are doing, we don’t tell the truth. Some days we seem cold, distance, not very sociable. On those days, we’re struggling just being upright. If we’re quiet, I can guarantee you that person is in serious pain. FMS suffers don’t look sick. We try hard not to walk around with a grimace on our face.
But if you watch us closely, you’ll see the signs of it. When I get up from sitting, I hesitate before I start walking. I’m gauging how much pain that first step will cause. When I bend over to pick something up, I go slowly because it feels like my back is cracking wide open. We tend to walk slower than others. Our feet, ankles, knees and hips hurt with each step. Over doing it can put us in bed for days, wrapped up in an electric blanket or a heating pad.
We not only suffer from the pain but we also suffer with guilt. My husband is my rock. He knows in a glance when I’ve gone too far and need to stop. He has stepped up to take over the household chores I used to do. And I know he does it out of love, but I still feel guilty that he has to do those things. I feel guilty because not only has FMS affected my life, it has affected his as well. I’m no longer able to hike rough terrains; I can’t go from sunup to sundown full steam anymore. The families of people with FMS suffer almost as much as the person who has it.
I’m not telling you all this for your sympathy. I tell it for awareness. If you see me out and about, I’m going to flash you a smile. Only my family will see my tears. Only my family knows the real truth of FMS. I’m not trying to hide it. I’m trying to fight it. I wondered at first “why me?” I call that my “woe unto me” mode. Why me? Well, why not me? What is so special about me that I didn’t deserve a little struggle in my life? Nothing. It could be worse. I could have been diagnosed with far worse illness. It was then that I started to fight back.
I have been given the gift of today. I’m not promised a tomorrow. I have today, right now, this moment. I can’t get it back, no do over’s and I’m not sure what tomorrow will bring. So it’s this moment right now that counts. How was I going to live in this moment? Was I going to focus on my constant pain, and continue to feel sorry for myself? Or was I going to do the best I could? One of my favorite bible verses is in Philippians which tells us to “rejoice, rejoice and again I say rejoice”. It says it 3 times, so it must be important eh? It doesn’t say just to rejoice when things are going good. How do you tell God: sorry I’m having a bad day so I can’t rejoice, in fact I’m not even going to try. I wasn’t even trying. Rejoice? Rejoice with FMS? Well I can do that. I can rejoice today. I started to find things to be grateful about. I could still walk. I can still dress myself. I can still work. Once I started being grateful life started to feel worth living again.
Now I’m no saint. I’m not saying I go around all day rejoicing and being grateful. I wish I could, but I’ll be honest….some days I just can’t. But I aim for 51%. If I can be grateful, happy, thankful, positive at least 51% of the day, then I feel I won the round with FMS for that day. I have so much in my life to be thankful for even with the FMS cross I bear. I still have eyes that see loved ones and friends, the sun rise and set, flowers blooming, and stars twinkling. I still have ears which hear music and laughter, thunder rolling, rain falling, and birds singing. I still have motion which allows me to hold a new born baby, give hugs, plant a little garden, and stroll on a cool evening. I still can feel the caress of my husband, the 3 quick squeezes of my hand which is our secret way of saying “I love you”. I can still smell fresh cut grass, roses blooming, savory food, and fresh washed linens.
FMS has changed my life; it will change my future as well. There may be things I will have to give up, but there will be new things to take up. I will strive for 51%. “This is the day that the Lord hath made, I will rejoice and be glad in it.”