A Year of Blogging: May 12, 2011

May 12 was Fibromyalgia Awareness Day. And in the truest irony, my Fibro almost knocked me down yesterday. Almost. It didn't completely win. I was diagnosed with Fibromyalgia five years ago. The diagnosis was a mixed blessing. On one hand, I finally knew what was causing all this pain, all the problems. I had been seeing various doctors for two or three years, trying to figure out why I felt so lousy. They couldn't find anything, and I found myself sitting in countless exam rooms getting looks from Doctors who knew so much. They treated me like I was a hypochondriac, or crazy. I looked fine. The tests were normal. That may be, but I knew I was too young to feel so lousy. In one last attempt, I switched neurologists, and after a couple of appointments I took in an article about Fibromyalgia that a friend had sent me. She had been telling me for at least a year that she was certain I had it. I highlighted the parts of the article that applied to me, and showed it to the doctor. Most of the article was highlighted. When he issued the diagnosis, I cried tears of relief. Later in the day it hit me. I had just been diagnosed with a chronic condition. A condition that there is no 'cure' for. I was two months away from my 30th birthday. That was positively depressing. To know I'd live with this for the rest of my life. So I started learning all I could about it, and started modifying my lifestyle. It has taken me a couple of years, but I have learned to listen to my body. I have a limited amount of energy on any given day. I need to acknowledge that and plan things accordingly. Before the fibro, I might have planned to do the Cincinnati Zoo and the Newport Aquarium in the same day- after all, they are only a few minutes apart. But now I know it's one or the other. And even then, I have to sit down to rest a little. People have asked me what it feels like. It is hard to describe. The best thing I can think of is to tell you to think how you feel when you have the flu- achy all over, and every part of your body hurts. The fibro pain is sort of like that, only amplified and it occurs every day. It's not like arthritis where it's always your back or your knee that hurts. The fibro pain moves. Some days my shoulders hurt so much I can't move them. Other days it is my legs. Still other days the pain shoots through my arms. It feels like cold steel knives stabbing me at various places throughout my body. I always have pain. When I wake up, when I go to bed. The pain is 24/7. It's just in varying degrees. Some days, I don't really notice it. There might be a pang here or there, but I'm not aware of the pain most of the day. Other days it is just the opposite- and I'm aware of every inch of my body that is in pain for every minute of the day. Some days it hurts to wear clothes, which is quite a challenge because I do not live or work in a nudist colony. In the summer, it is easy to deal with those days, because I have a couple of sun dresses that just lightly skim the body. In the winter, I pick the softest clothes I can wear and take it one hour at a time. It is important to keep moving with Fibro- just as it is with arthritis. Some days, movement isn't possible. There is a commercial for an arthritis medication with a man on the beach with his dog. The voice in the commercial says you know you that moving helps with the pain, but some days it hurts to move. Or something like that. It's the same with Fibro. I always try my best to move, one foot in front of the other. I might be slower than usual, but I try. There are days that my energy is gone, and I can't fight it. On those days, I crawl back into bed and rest. Rest is the best thing for Fibro. People with Fibro have less energy than someone without it. I am always tired. I could sleep for 12 hours and wake up feeling like I didn't sleep a wink. I do not often get quality restorative sleep. It's hard to fall asleep too, the pain keeps me up a lot. If you think of my energy level as a gas tank, on my best days I'm at maybe 3/4 of the way full. On those days, I can clean the whole house, or tackle many projects on my list. Those are rare days, but they are wonderful. Most of the time, I think I operate around half- full. I can go to work, or run errands, make dinner, blog, and do the day to day things. I take a cat nap at lunch, and sometimes fall asleep on the couch after dinner for an hour or so. And then, there are the days that the tank is on E. Perhaps it's even on fumes. Sluggish would be a huge improvement from how I feel on those days. I feel like I can't get out of my own way. Walking the six feet from my bed to the upstairs bathroom feels like I'm trying to climb Mt. Everest. I have learned on those days, nothing is getting done. The pain and the energy levels are manageable. I have learned to live with them. The part I still haven't gotten used to is the Fibro Fog. Sometimes, your head gets so mixed up, you don't know which end is up. It really does feel like a dense fog is in your head. On those days, I end up second guessing every thing I do. I do something routine at work, and immediately after I complete it, I have to check it to see if I did it, because I don't remember doing it. I say something and don't know what words just came out of my mouth. I'm incapable of forming intelligent sentences. And I can't remember my name. Those days are the worst. I have always been very intelligent, and have a memory like an elephant. The Fibro Fog days leave me disoriented, frustrated, and sad. On those days, I have a better understanding for what my dear Grandpa felt as Parkinson's ravaged his body. These are also days that I know I'm a danger to myself and others- so I usually have Erich drive me to work (if I get there), and I am not allowed near the stove or knives. Thankfully, these days are not common. So this is what I live with, on a daily basis. I don't often talk about the pain, unless it is one of the bad days. No one wants to hear about your aches and pains on a daily basis. I wanted to share it now because it is Fibromyalgia Awareness day. I still get looks. I know I always will. If you look at me, you see a healthy 35 year old. If you could crawl into my skin for a day, you'd have such a different viewpoint. I can assure you, it isn't something I made up. I have never enjoyed being sick, and I don't enjoy being in tremendous pain all the time. My hope is that as more people share their stories, it will lose the stigma it has, and more people will realize Fibromyalgia is real.