Sunday, February 6, 2011

Remove Yourself From The Illness (Repost)

A condition like Fibromyalgia is all consuming. People that don't have it just don't understand. When every inch of your body is screaming in pain and you can't even sleep to escape it, yet walk around in a fatigue-induced fog trying to function, it is damn near impossible to distinguish where you end and Fibromyalgia begins. One of my hardest emotional hurdles in managing Fibromyalgia/CFS was separating myself from the illness. In the beginning I would chant over and over to myself, "I have Fibromyalgia, Fibromyalgia is not me!" I had to draw a line between us, for it was quite possibly on its way to overtaking me, the very essence of me, it is that strong. When I would wake up in the morning after working retail the day before I would dread those short steps to the bathroom because I simply felt like I was going to break I hurt so bad. It was very difficult to think about anything else but the pulsing, coursing pain. When I would lie on the sofa watching the dust and dishes and laundry pile up around me, eating preservative filled Nutri-System because I had lost the use of my right hand and arm and could not cook, it was extremely difficult to draw the distinction.

But I was insistent. I refused to become disabled and watch my life fold in on itself, crumble down around me. Fibromyalgia came hard and fast at a point in my life where I was just embarking on my life, and after a few months of intense wallowing in self-pity I picked myself up by the bootstraps and set out on a quest to get better. Doctor after doctor would tell me there was nothing wrong. I found a great resident at UCSF who worked with me extensively to rule out every other condition imaginable. I did hours of research and would bring him in lists of ailments with similar symptoms and we would comb through it, disease after disease. Finally after about a year and dozens of tests he could only conclude I had CFS, still in the very early stages of Fibromyalgia and not yet diagnosable. I saw an endocrinologist for a second opinion and she diagnosed CFS and Fibromyalgia, already picking up on the loss of my right hand and arm as a Fibromyalgia symptom. So there I was. No treatment, no cure, no understanding of what I had from modern medicine. Just pain pills, pain pills with a side of major attitude. I guess some people like mood swings, constipation and nausea but not this chica! No, addiction to pain pills was never my issue (I have plenty of others, don't worry) but I did become addicted to not being in pain. It was too much to bear. I had to work. I had to function as some sort of wife. My responsibilities did not just go away because I was sick! So push push push myself into full-blown Fibromyalgia I did!

Eventually I turned to alternative medicine, combined with modern medicine, and have spent the last 4 years in various stages of ascent and decent toward improved health. I have educated myself as to the truths of our modern lifestyle and how it is so at odds with our biology. We are annihilating ourselves with our chemical filled diets and sedimentary lifestyle, our lack of sleep and abundance of stress! The typical American existence is the complete opposite of health and wellness, it is not even funny. Just yesterday I went to the "regular" grocery store (usually shopping at the health food store and Trader Joe's) and was appalled at nearly every label I read. French Onion Soup mix has MSG in it! MSG! But I digress... All the while I had to keep drawing that firm line between Fibromyalgia and Leah. We were not one and the same! It kept getting blurred, Fibromyalgia trying to erase it. But I would come along right behind it and draw it again, deeper and deeper into the ground until there was a divot between us that could not be repaired. We were in a never-ending circle of a battle, and slowly but surely I was the victor. After rounds of meds and side-effects from hell, working less and less until "Domestic Goddess" is now my claimed profession, buckets of supplements and hours upon hours of sleep I now consider Fibromyalgia 3rd or 4th place in my life. And I can finally say with all the confidence in the world, "I have Fibromyalgia, Fibromyalgia is not me".

Thanks for joining,


  1. My struggle comes--right now--from all of the areas that Fibro creeps into! Not just the the pain and fatigue,etc, but the social things, too. I am divorced now (thanks to a man that "didn't sign up for this"), and now have started talking with a man, casually. When he asked me "what do you do for work" I crumbled. The Ex put the notion in my head that no man wants a woman that can hardly keep house, etc. and the word "disabled". I am scared shitless that I will never get a hug or a kiss because of my illnesses.
    Wow, that turned into a confession, sorry. Guess I'm having a hard time with the "is not me" part...Hope you're feeling some better...

  2. I'm dealing with this right now, not that now is any different but it's especially prevalent in these tough winter months. I feel useless and like the pain is so consuming. My fatigue has somewhat improved but if it's not one it's the other. I also feel that until someone has this illness it's impossible for them to understand how consuming it is.

  3. Excellent article!! I have realized the same conclusion....the American Way is the wrong way. It is making us very sick!!! Stress is the key.....stress and poor quality of food is making us sick.

    As more and more men and women grow up and become involved in their careers and begin famililies, trying to do it all......having it all, more and more will be affected by CFS/FM. But, as you said, they will continue to push, push, push themselves until they are in full-blown Fibromyalgia and their world (as they know it) will come crashing down around them.

    How do we get this merry-go-round to stop? The American Dream isn't all it's cracked up to be.