Fibromyalgia Is Not Something You Can Battle With, It's Something You Cope With.

I am 25 years old, and I was diagnosed with fibromyalgia when I was 16.

It has been a long journey and I am only beginning my life.

I was a junior in high school when I felt increasingly tired and fatigued. Every morning I pulled myself out of bed to go to school and try to keep up with my studies. I had a 4.0 and was in an honers program at a unique public school that offered many college prep classes. I was a year ahead in math, taking a full load of academic classes with little time for much else than school. I hate to say it, but at that point school was my life, and I was devastated when my grades began dropping. Increasingly, I was crying and felt lost because my body seemed to be betraying me. For the first time in my life, I struggled to concentrate and my cognitive abilities began to decrease. about mid-year, it was growing much worse and my once-perfect attendance began to drop as well. I started missing days because I couldn't get out of bed. The pain was everywhere, and I was dizzy and exhausted.

My parents took me to doctors, who tested my blood and poked and prodded everywhere. Some tested me for lupis and like diseases. Some thought I had a blood disorder or a nerve disorder, but all test said the same thing - I was fine. Soon my parents were starting to believe that I just wanted to skip out. At one point I was sent to the school counselor about what was wrong, as many of my teachers became concerned at the sharp change in personality and vigor. I started to believe that I was crazy and that I was just a lazy person or that I was stupid. I understand now that the self doubt is yet another aspect of having fibro.

Having seen many doctors, I finally was referred to a doctor who specialized in rheumatology and almost at once she asked if I had ever heard about fibromyalgia. My mother spoke up and explained that she had it. The doctor tested my mother's pressure points and my mother almost screamed from pain on the each place she pressed. She said she was sure I would feel pain the exact same way, and pressed a good number of mine until she announced that I to had it.

I was excited to be able to put a name to it, but asked how it was treated. She said there were a few things I could try, but that a lot of patients never really get relief.

I gained some understanding at school once I had the papers and diagnosis, but ended up failing a course because of absences and not being able to complete all of the make-up assignments. Since I was a year ahead, it didn't hurt me too badly academically, but it made me upset. I got a C in another class and was upset about that as well. A lot of it was this way - if I didn't make everything up in the last few weeks, if I didn't pass exams where I couldn't hear the lectures, if I couldn't teach myself the college level courses myself, I may not be able to pass.

In the end I graduated. My gpa was not terrible. MY quality of life was ok but the pain did not stop, and neither did the insomnia, or the fact that I felt I had failed everyone because I was not perfect.

I got into a good college and struggled with the fibro. I started doing yoga and swimming and taking supplements. I completely cut out all caffeine and over-processed food. I learned how to cope with it wen it was bad. I prioritized school and had to forgo a lot of fun to get my work done. I had a lot of classes that tended to be somewhat physically demanding out at the school's nature preserve. I even spent two summers working at farms - That was especially grueling in the heat, and at the end of the day, I practically collapsed in my room, but I was very stubborn and made it through somehow. Still, I felt misunderstood and lonely because of the amount of effort I had to put into every little thing. I was, for all intents and purposes, a perfectionist and very idealistic. There was no best because there could always be better. My question to myself was always 'Can I stretch more to do better?' and I did, but I didn't learn until after college that a lot of my pain was fed by my perfectionism. Sometimes I wonder if it would have helped me to rest and calm down more and not worry so much. Fibromyalgia has always been much worse when I am not being realistic with my limits. I graduated college, but missed out on a lot because I retreated to my room and was either studying or sleeping. I missed days because of the pain, but I was determined to miss less days than in highschool.

When I graduated, I was jobless and stuck with hefty school loans. I worked at a factory for a few months, but was soon let go of because of frequent trips to the bathroom, having bleeding hands from the work, and not being 'sanitary' because I caught everything. I didn't miss work a single day in fear that I would lose my job, but I had to stand all day and I came home with cracking feet and fingers every day. It was about that time that I was diagnosed with polycystic ovarian syndrom and severe hormone imbalances. I had to seek medical attenton after having my period for 6 months.

After that I found a job with a small nonprofit, but the miscle pain and poor immune system became much worse. For months, I worked a the place and took most of my sick time intermittantly untill I had to start using vacation to stay home when I could not move or think clearly. I was often sick but figured it was just my /normal' fibro pains and weakened immune system getting the better of me. In my last four months or so there, I foud out that I was not able to earn the extra money for a school loan that was part of the year-long contact unless I fnished the term out for the year. At the same time as I found out that the leader of the place had not disclosed the report that there was and had been mold in the building. I stayed for the remainder of the term weighing if I should stay or not. In the end I stayed for the money and loan bonus.

I have moved and gotten another job now, but used up all of my vacation because of the pain and worsened insomnia. Not too long ago, I was completely acticted to ambian and Lunesta. For those of you who are familiar with fibro-related insomnia, I don't have to explain how much more pain is there when you don't sleep. I've gotten approved for FMLA and take as few days of it as possible since, again, I need the money to pay extensive college loan bills.

With all of that being said, I acknowledge that this is all connected. The high stress, the lack of sleep, the hormones and mood swings, the sheer pain that never really goes away... It's all related. It is related to fibrmyalgia, and all stems from that monster. I've learned that I cannotfight fibromyalgia or 'battle' with it. That only makes me more stressed and makes me feel like a failure. I think the only thing that can be done is to learn how to live beside it, knowing it will always be there, but reaching for more than a life consumed by feelings of guilt and dispair. It has surely changed the course of my life, but I live to show it that it has not bound me and that I know it is not something to conquer. All-in-all, perhaps I needed to reach the point where I stop trying to 'win' by 'proving myself' to it or to anyone. It is not my purpose in life to be a good student or have a great job or even to be healthy. I have begun in the last couple years that I can reachout to those around me and give them strength and courage to live their lives with their own beast. Whether it's fibro, depression, financial problems, or even a rough past that haunts them, all of us have something we must live with. I never plan to be there for someone as much as I see that I am sorrounded by a great number of people in my life, all of whom have their own struggles. Perfection is not real - it is an idea that enslaves us. It is not in asking what we can do better that we find hope, but in asking what we CAN do.

I'm not sure exactly of what I can do right now, but it will come. I hurt today, and I have cried a few times already. The pain of just sitting in my bed is enough to make me want to shout out to someone. I love my husband, but often I feel like I am a burden to him because he loves me so much and I feel so selfish trying to learn how to start out and take care of myself in this crazy world. I've not yet found a balance in caring for myself and for others, and I take more than I give. But I am still here and who knows what I can do in my lifetime?

I'm far better at living alongside my fibromyalgia, and and slowly learning more each day. I've lived about 65% of my life with this, and it does not get easier. It doesn't seem to even get better. Still, I have better ways to respond to it than I used to, and am developing more lifestyle habits to cope with it in better, healthier ways. There are always going to be good and bad days with this. Living alongside it and not feeling shame and guilt over it is a struggle, but it's well worth it. I live for the good days and prepare for the bad ones, but try to move forward no matter how I feel. Even if it's just an inch or a fraction of an inch, it's still progress as long as I learn and adapt more. A lifetime of fractions of inches is still quite a bit of progress, it's just difficult to see from the side I'm on.

I don't know if this will help anyone or not, and I'm not sure if it's depressing or uplifting, but it's real, and it has all come from my heart.
AtarashiiNozomi AtarashiiNozomi
22-25, F
Jan 18, 2013