Fighting Fibro with Fire

Three hundred and sixty-five days have come and gone since I first decided to share my story. In that time, I have walked, (and even jogged), over 1,600 miles, lost about 35 pounds and 4 jeans sizes. In short, over the past year, I have taken my life back; fibromyalgia, while still an undeniable part of my life, no longer runs my life.

If someone had told me a year ago that I would make the changes I have, I would have said “that’s simply not possible”. This time last year, I was a wreck, in every sense of the word. Physically, I was in constant pain, over weight and completely exhausted. My emotional state was even worse; I was in the throes of a deep depression, suffering from panic attacks and utterly hopeless about my situation. My marriage had fallen apart and my other relationships were starting to fray as well. I felt completely powerless to stop any of it; I had lost control of my life and I honestly believed that I had no choice in the matter. I had spent so long allowing the fibro to dictate my actions that when my life fell apart, I had nothing of my own to cling to. I felt like a victim.

It wasn’t until I began to seriously contemplate suicide that I realized how wrong I was. There was one thing that I hadn’t yet lost: myself. I am, by nature, a fighter, but I had forgotten that. Somewhere along the way, I had stopped fighting and simply accepted the idea that fibromyalgia was going to run my life. That idea spread through my mind like a weed, choking out any hope or motivation I had. Thankfully, right when I needed it the most, I found the strength I needed to save myself. In that moment, I realized that the only thing stopping me from living my life on my terms was ME.

It was such a simple idea, but it was more powerful than anything I have ever experienced. Using this new understanding, I came up with a plan to heal myself. No more waiting around for someone else to come along and “fix” me, no more feeling sorry for myself. If I wanted my life back, I was going to have to fight for it.

Coming up with my plan was easy, putting it into action, however, was another matter altogether. Not only was I having to work against what my own body was telling me, I had to fight my own self doubt and the doubts of others. Most of my family and friends were incredibly supportive of my new outlook; unfortunately, a few of the people I had expected to be the most supportive turned out to be the most critical. At times, it seemed as if they were trying to undermine my efforts to change, going so far as to plainly tell me that they believed I couldn’t do it and even saying that despite my efforts, they saw nothing worth being proud of.

Typically, this is where people say things like, “I don’t care what other people think of me” or “their words can’t hurt me”. Well, for me, that’s not true. I do care, (probably way more than I should), about what those close to me think about me and I have always been overly sensitive about what other people say to me. Add that to my already delicate emotional state and you’ve got a recipe for a total breakdown. There were so many times that I wanted to give up, so many times that I very nearly did. It took me awhile, but I eventually learned to turn that pain into fuel. I learned to “punish the pavement” rather than myself. After awhile, that pain turned into anger and I used the anger to further fuel my fight. Going through that was Hell, but I see now that those doubts and cruel words only made me fight even harder. So, thank you, for helping me to see you for who you are and for helping me find the strength to get past my own barriers, now please show yourselves out of my life*.

*(For the record, my original statement wasn’t nearly so polite.)

Flash forward to today: I am still here, still fighting and better than ever. I am active, healthy and best of all, happy. More importantly, I can feel the shackles of fibromyalgia falling alway; I am almost entirely pain-free. I do still have occasional flare ups, but they are usually brief and nothing at all like the debilitating attacks that would keep me in bed for days; no more giving up things I want to do because of pain.

I never imagined that I could live without pain as the center of my universe, I never even dared to dream that I might live something like a “normal” life. The success I have experienced over the last 12 months is beyond anything that I could have hoped for; in my own mind, it’s nothing short of magic.

Of course, the problem with magic, is that it is not free; to borrow a quote from Rumplestiltskin, “magic always come with a price, Dearie”. So, what is the price I pay for this particular brand of magic? Hard work and self-discipline. The simple truth is that keeping myself healthy is literally, a full-time job. I have to make sure to stay active and I have to pay close attention to what I eat, every single day. Sure, I have my “off” days, but they are few and far between. I cannot afford to sit on my butt all day and just eat whatever I want to; my body is quick to point out when I’m not doing what I need to.

One of the things that I have learned over the last year is that counting calories is not enough. I’m not even talking about for weight loss, I’m talking about simply maintaining a balanced, healthy diet. My daily calorie budget right now is around 1600 calories; well, 1600 calories of cookies, chips and pizza are not the same as 1600 calories of veggies, fruits and lean protein. In order to keep my system happy, I eat 4-6 carefully controlled meals every day. The amount of thought and effort that goes into my diet alone can be overwhelming, as I find it difficult to come up with different ideas that are healthy, tasty and easily fit into my plan.

On top of that, I have to make sure to keep moving. My body has gotten used to moving and the pain will happily take over if I’ve been sedentary for too long. My goal is 10k steps a day (about 5 miles), which at a normal walking pace for me would take about an hour and a half of solid walking. I prefer to break that up into smaller, easier to manage chunks throughout the day, which like my meals, takes a fair amount of planning on my part. 10,000 steps is a lot, believe me, I know. While I have learned to enjoy walking and being active, I don’t always do it because I want to. I don’t exercise because I feel good, I exercise in order to feel good. There’s a huge difference there, and it’s sometimes hard for people to understand, but I can’t put enough stress on the idea that it is absolutely necessary to stay active even when it hurts because eventually, the activity will make the pain go away.

I cannot escape the fact that I am sick; I know that no matter how badly I want to, there are always going to be things that I am unable to do. For instance, I would love to be able to get back into the classroom and teach again. I know my limitations. I know that I cannot maintain my current level of health (and happiness) AND take on a regular job. I understand that there are many, many people out there who are capable of doing all of these things and more on a daily basis, but I have to accept the fact that I am not one of them. I simply do not have the stamina to do it. Maybe one day, I’ll find a way around it, but for now, my “job” is taking care of myself.

You know what? I am ok with this.