Post 1.

I’ve been called a drug addict. I’ve been told it’s all in my head. I’ve also heard that I should stop looking for attention or I just need to keep looking, there is a reason I just haven’t found yet. My mom was 100% convinced that I had Lyme Disease, my doctor gave me anti-depressants. (He was also the one who insinuated that I was just looking for drugs.) But the bottom line is that I am in pain. Always. I have been for 8 years. I’m only 24.

I decided to start this blog because I needed an outlet. Writing has always been something I have turned to when I need to vent, when I need to find comfort, when I need to pull within myself and find answers. I also use it to hold myself accountable.

I was diagnosed with Fibromyalgia in August 2007. In April 2009 I was told that I have Chronic Pain Syndrome. I like the second diagnosis better, it seems to fit. My understanding of what these words mean is that my body doesn’t know how to interpret pain. My central nervous system and my brain have rewired my body in such a way that everything is interpreted as a painful event, when it shouldn’t be. To make matters worse, I have a very low threshold of pain. I’ve had this since I was a little kid. I used to crumple at the slightest amount of pain, or so my mom tells me.

Western medicine doesn’t have a very good understanding of what Chronic Pain Syndrome is. There is no biological or physiological reason for why my body screams in protest everyday. My blood work is beautiful, my blood pressure is consistently low and normal. I am lean and in decent shape. I workout, I eat right, I get plenty of sleep, I only get sick once a year, I have all my limbs. And yet all my limbs, all my body hurts all the time. Pain is the constant in my life.

Psychologically I am fine. Like every human being on this planet I’ve had my ups and my downs. I’ve been on anti-depressants while I dealt with an abnormal relationship with food, otherwise called Binge-Only Bulimia. From 16-20 years of age I hated my body, from time to time I wanted it to cease to exist so that I didn’t have to deal with it anymore. But I moved on from there, I let go of that sort of thinking and at 21 I found a way to love my own skin. I was very proud of myself for getting to that point. After years of therapy and lots of rejections from men that I adored, I was finally at a place where I stood tall and found myself attractive. I was comfortable in my own skin and I was finally happy. All the while though my back hurt, me knees hurt, my wrists hurt when I typed too much. I ignored these things. I chalked them up to my dislocated patella, my curved spine, my being a college student and being on my computer too much. But at 22 I was getting worse and I didn’t have any idea why.

I switched my exercise routines. I started to swim instead of walk, I did Pilates to strengthen my core in an effort to help my achy back. I stretched more. I got worse. Pain started to infect my sleep. I tossed and turned all night. I woke up feeling like a freight train had hit me after I’d slept for 9 hours. I started to be more aware of the body I was living in. I started to hate myself once again, which really, really pissed me off. After all the work I’d done to love myself, hating my body was not what I wanted. But that is what happened.

I remember the day I snapped, I remember the day that I came out of denial long enough to make an appointment with a doctor. I was sitting on the floor of my room stretching. I had one leg out, one leg in with the pad of my foot resting on my thigh. I was leaning out trying to touch my toes. And all of a sudden the pain in my hamstring got so bad I was forced into tears. I cried and wondered aloud for the first time “Why does it hurt all the time?”

I went to the doctor, I told her all that I knew, she gave me a diagnosis of Fibromyalgia and sent me home with painkillers. I’ve been on them ever since. The next year I was in full blown denial. I thought that there was some other answer to my pain, and I tried to find it within the confounds of non-Western medicine. I tried Acupuncture, Rolfing, Physical Therapy, Yoga, Pilates and Chiropractic. All of these gave me pain relief for about 24 hours maximum, and then it was back to business as usual.

I’ve come out of denial, finally, a year and a half after I initially acknowledged that something was wrong with me. I don’t really know what acceptance is yet. I’m trying to face what the parameters of this disease really is. I know that it will be with me for life, a fact that I don’t want to believe, but I am starting to. I know that my diet has a big role in how my body feels. Wheat, dairy and processed sugar are all things I need to avoid. But you try cutting out the main food groups that you grew up eating or that everyone else around you eats. I am also haunted by my eating disorder days when I start to tell myself there are foods that I cannot eat. I still don’t sleep well, but there are drugs that help me with that. I exercise, mostly in water. I have found a love for Aqua Jogging. Which is a seriously old lady thing to do, but I don’t care anymore. I love to glide through the water. If I believed in past lives I think I would have been a fish or maybe a dolphin or a penguin. I love penguins.

Part of being in the stage of acceptance is coming up with a plan, a goal, an idea of how to cope daily with the struggles of chronic pain. This is where the blog comes in…or so I hope. I’m terrible at consistency. I am a binger in life. I binge on food, I binge on exercise, I binge on friendships. Now I am trying to change that. Part of my idea of getting better and living a life without physical pain is being consistent. With my diet, with my exercise, with everything really. I always do better when I have something or someone to hold me accountable. I am a child of my culture, which means that years of being a student has programmed in me a need to “turn in assignments”. This blog is my homework assignment. (I just hope that I can be consistent with it!)

I don’t know if anyone will actually read this, but I don’t really care. I am doing this for me. Maybe it will help me get better, maybe it will help me cope psychologically, maybe it will help others out there who wake up in pain everyday, just like me.

All I really know is that I want to get better. I don’t know yet what better means, but I’m gonna try. And that’s all that we really can do, right? We have to try.