I started this blog earlier this spring as a means to release some frustrations about what I go through every day. I wrote only two posts and gave up. I lost meaning in why I was writing. It took several painful weeks, sleepless nights, and emotional turmoil to finally decide to turn my life around and focus on actually improving my health.
I found out at a very young age that life is very unfair. My mother was diagnosed with a very painful and misunderstood disease that I didn’t fully understand. Although, I do remember caring enough at my young age to try to understand what she was going through. I still remember the day when I stunned her in our basement. I was maybe 7 or 8 at the time, give or take a few years. My sister and I were playing in the basement, using our easy bake oven to make, what we called “Cinnamon Fries”. It was basically cinnamon toast cut into strips. I remember this being the beginning of her journey and I could see how it affected her, both physically and mentally. Although at that age, I couldn’t fully grasp what was happening to her. I do remember that consciously I understood the meaning of her disease. My sister didn’t stay with us all the time and didn’t quite know what was happening to mom, but I do remember her asking when we were making the Cinnamon Fries. At that time, mom was coming down stairs. She was curious to see if we understood what was happening to her and why she was changing. That was the first time I, as a child, explained the definition of Fibromyalgia.
Now I don’t quite remember exactly what I said, but I do recall that it was correct. I know it was correct by the way my mother acted once I said it. I also remember saying it without thinking, feeling, or even engaging in what I was saying. I said it while I was preoccupied with making food from a toy oven. Needles to say she stopped dead in her tracks and went back upstairs. From that moment on, I studied Fibromyalgia. I tried to help my mom with her physical therapy at home and when she decided to go back to school. I remember some of those evenings so vividly that they sometimes out weight the good memories I had as a child. From mapping out her tender points on her body, to going on walks to help condition her muscles, I remember how very little she was able to do outside of work. This was a drastic change from how she was before the disease awakened and took over her body, her life, and her emotions.
Flash forward to age 16, I was a semi active child. I loved riding bikes, playing outdoors, and tried every sport or activity imaginable. I was in my sophomore year of high school and I decided to play volleyball the following year. My aunt was the inspiration for this. She was a star volleyball player and an amazing person. I wanted to be just like her. I would help her train on her moms, my grandmothers, porch. She would pass the ball around with me and told me she would help me practice and said that I could be on the team when I got to high school. And I did. Now I was nowhere near as good as she was, but I was part of the team. Skip to the summer before my junior year, I was at practice. This was a normal grueling practice. With suicides, running up and down stairs, and leaning against the walls like you were sitting (whomever thought of that one, I will find you and I will kill you….not really I never liked that movie). We now were practicing our spikes. Now mind you I wasn’t the most coordinated or physically apt, but I tried my hardest. I set up for the spike and felt and HEARD a pop. I didn’t know it at the time, but I just changed my life forever. I had torn my trapezium muscle in my right shoulder and also kick started the very same disease that my mother had. Fibromyalgia.
Now at that time, the medical world was just starting to realize that it was an actual problem rather than being “All in your head”. It took 3 years of PT and tests to rule out every other possible disease, problem or disorder. We saw dozens of doctors. One even said that because I am double jointed, and I can touch my thumb to my wrist, that I have EDS type 4 (Ehlers-Danlos Syndrome). We needless to say we ran out of there. We did however find a rheumatologist who finally diagnosed me at age 19. He said that I did have Fibromyalgia and here is some Lyrica. Well at the time, that course of treatment was all I knew. That was the start of trying dozens of medications that did not work for me or had horrible side effects to even be worth it. I also didn’t want to “get through the side effects” to be addicted to the medicine or need such a high dose that I couldn’t go any higher. Unfortunately this was standard practice and unfortunately my mom followed this and ended up maxing out on several highly addictive, dangerous medications with no relief. I knew I could never let myself be on medications like that, but I ended up cycling through every medicine known to help Fibromyalgia twice.
I went through the infancy stage of my Fibromyalgia in my senior year of high school. I didn’t know why I couldn’t climb the stairs without feeling like I was in quick sand. I didn’t know why I never had energy after school to hang with friends or go out. I also never showed how much pain and fatigue I had because I was afraid that I was just being lazy or hormonal. My parents never knew how much I struggled, but I knew how much they struggled. They tried to provide such a good life and give me everything I wanted, but they forgot about what I needed. The struggles they endured were to make me happy and safe but they didn’t know how unhappy I was. At one point in high school, I didn’t have a best friend. Sure I had people to hang out with and I still remember there names and what they looked like, but I didn’t trust anyone enough to tell them what was going on. This lead me to one of the biggest low points in my life………
For months I was unhappy and confused to why I had the life I did. Why did my life change? Why was my body so tired? Why was it when I got just a little sick, I couldn’t move? Why did my legs hurt so much at night that I cried myself to sleep almost every evening, only to not be able to sleep?….. I was lost. I was alone. I tried to leave. I planned it. I thought of several ways to do it. I even acted on several of those ways, only to pull myself out at the last second. I found something to keep me going. I thought of what would happen after the fact. How would my family react? What would they say? What would they do? Would it be better? But I hung onto a hope that I would go through with it, then I could start over as someone else……. Someone healthy… Someone not lazy, or stupid, or messy… These thoughts were first of many.
At age 16 I was thinking of suicide.
I would fail every single time I tried to do it. I thought of so many ways of how to do it that it makes me sick thinking about it today. This was my life. That was the start of a lifelong battle. This is how I was going to be for the rest of my life. Or so I thought.
I can write about this now because I got through it. I pushed through the feelings, the pain, the anger, the sadness. It wasn’t until recently that I actually started enjoying life. I don’t know how I made it to where I am both physically and emotionally, but through all of the darkness I managed to find the most wonderful husband. He has helped me crawl out of what I thought was my life. He has shown me the difference in settling with my painful, depressed life, and fighting everyday to live a happy and fulfilled life.
Every day I wake up in pain. Every activity I need to think about the physical ramifications. Every night I fight insomnia. My body feels 80 years old with the mind of a 26-year-old.
But Every night I fall asleep next to an amazing husband. Every night I get to live pain-free in my dreams. Every morning I wake up hearing the wonderful nature outside. Every day I try to find new ways to connect with natural world. I try everything I can to keep going every day. I fight. But I choose to fight with hope and love. I don’t know why I have this disease. I don’t know why my mother or grandmother has this disease. But I do know that if I didn’t have it, I would be a completely different person, and not one that I would like.
So even though I live with an unpredictable condition, I am still very grateful that it happened. I have been through so much in such a short amount of time, that if some freak accident happened I am content to leave. Am I cured of depression? No. Am I in less pain somehow? No. These are daily battles until I pass away or they find a cure. I chose to be humble in my day-to-day life. I have turned into an extremely optimistic and understanding person and that wouldn’t have happened if I was healthy. It’s a crazy thing to say, but it is true.
And I will let you in on a secret…… I bet you that anyone in chronic pain, of any sort, has the same heart that I do. They may seem mean, rude, or unapproachable, but all they need is for someone to understand them and let them know that what they have is real and it will get better.
I am a Black and Blue Ninja. My illness is invisible, but my love is not.