May | 2013 | Fighting Fibro with Fire

THE Plan

“You can’t change anything about the disease, so I don’t understand how you plan to change how the fibro makes you feel.”

I swear, if I hear that statement or any similar sentiment one more time, I’m going to unleash the full fury of my red-headed temper.

No. I cannot change the fibromyalgia. I can however, change MY reaction to it. Think of it this way: you’re wearing brand new shoes and you step in a lovely pile of doggy doo. How do you react? You have a choice: you can rant and rave, you can cry or you can laugh. Whether you realize it or not, you choose how you react. It just happens so quickly that most of us don’t even recognize that it was a choice.

I am choosing to laugh.

When the pain starts, rather than get depressed and angry (aka turn into a gumpy porcupine), I am choosing to think happy thoughts and redirect those unpleasant emotions. Yes, there will be days when I’m in so much pain I literally can’t get out of bed. I can’t change that, but I don’t have to lay there and feel sorry for myself either. I can call a friend, I can watch The Lion King (it’s my default “feel better” movie, don’t laugh!), I can even lay there and sing random songs at the top of my lungs if that’s what it takes to perk me up. Even better, maybe I can pull up my laptop and share my feelings here.

I realize that this is a slightly strange sounding plan, but for right now, it’s THE plan. I’ve tried more medications than I care to think about, they either don’t work for me or make me so addle brained that I can’t even manage to feed myself without destroying something (true story!). At this point, my pain management doctors literally can’t even come up with any new drugs for me to try- I’ve gone through all of them. I’ve done physical therapy, all that did was irritate me and make me even more depressed. I’ve also tried going to a chiropractor, various herbal supplements, stress management therapy, relaxation training… You name it, and over the last 12 years, I’ve tried it, (with the exception of acupuncture- the thought of it alone is enough to make me queasy).

I won’t deny that I’ve spent the last few years allowing myself to be a miserable wretch- that much is undeniable. The thing is, at the time, I didn’t understand that I was choosing to be that way. It’s taken a lot of heart ache and emotional trauma to pry my eyes open to that fact. It took me hitting rock bottom to see that I was responsible for my own suffering- it’s not an easy thing to realize. It’s so much easier to blame outside forces. That little shift in perception has made all the difference for me. I can see, now, with startling clarity how my every action fed into the negativity surrounding me.

Feel free to ask questions, I don’t mind trying to explain, just please keep the disbelief and negativity to yourself 🙂

As of this moment, my new plan is being severely tested- I’ve been in non-stop, 8/9 out of 10 level pain for about 5 days now. To be quite honest, the pain is starting to wear me down. I haven’t sprouted quills yet, but my temper is bubbling very close to the surface. It’s getting harder and harder to not simply break down and cry. I had hoped that when I had a flare up like this I might be able to go for a walk or do some other kind of exercise, but since the pain is centered in my knee and it doesn’t want to support any weight, the best I can currently manage is a Quasimodo like hobble. I’ll come up with something though, I’m not ready to give up yet! I plan to get back on track with my daily walks tomorrow; even if I can only manage a few minutes, it’s better than being cooped up in the house.

No more hiding

My name is Christina and I have fibromyalgia.

Up until very recently, that is how I identified myself; in my own head anyway, I didn’t actually go around introducing myself to people like that. My point is that after I was diagnosed with Fibromyalgia in 2001, I slowly but surely stopped thinking of myself as anything other than a sick person. My disease became what defined me as a person and it took control of my life. I got caught in a seemingly endless cycle of pain, insomnia, confusion and depression, and I couldn’t see any way out of it. My family did their best to be supportive, but I got so sick of being asked: “How are you feeling?” and “Are you in pain?”, that eventually I started to withdraw from everyone around me.

Fibromyalgia is a particularly insidious condition: it leaves you inexplicably exhausted and often in so much pain that it’s difficult to think clearly, yet, there is nothing physically wrong with you. You go from specialist to specialist explaining how much pain you’re in and suffering through test after test only to be told that they can’t find anything. Eventually, the doctors begin to suggest that maybe it’s all in your head and you start to believe it. Even after I was finally given the diagnosis of Fibromyalgia, the lack of any tangible evidence of the illness continued to plague me. I was angry at my body for betraying me, for making me feel excruciating pain for no apparent reason. I was humiliated whenever someone would ask me why I was limping or holding my arm strangely and the only answer I could give was that it was because of this invisible disease.

I did what I could to hide my pain, unfortunately, the only way I could really hide it was by keeping people away from me. Before I even knew what happened, I had turned into a grouchy, miserable, hermit. I created my very own “pit of despair” (if you haven’t ever seen The Princess Bride, I highly recommend it!), and there I sat, huddling in my own misery. In 2008, I was forced to stop working altogether because I just couldn’t handle the stress. I applied for disability and spent years fighting for it before it was finally awarded to me in 2012.

Meanwhile, my life fell apart, my relationships disintegrated and suddenly, I was alone. I am somewhat ashamed to admit that even after all of this, it took me several more months to realize that I was the cause of all my problems, not the Fibromyalgia. My epiphany came one night when I was sitting in the empty house wallowing in self-pity; I had been half heartedly contemplating suicide when I had a sudden vision of myself lying on the bathroom floor, covered in blood. It was in that moment that I realized I needed help. That one terrifying vision kick started my survival instincts and provided me with enough adrenaline fueled clarity to allow me to see the truth: the only thing keeping me from being happy was me.

I made the decision right there and then to get help, to finally go and speak to a therapist about how to deal with my illness. That first decision to seek help kept me going for the next few days until my appointment with my pain management specialist where I told my doctor the truth: I was depressed and in desperate need of someone to talk to. I had known that I was depressed for a long time, but like my pain, I was trying to hide it; when I finally admitted it out loud, I felt as if a long-lost part of myself fell back into place. I found the strength to step back and look at the mess I had made of my life and then I found the resolve to change it.

Which brings me (finally!), to the reason I’m writing this blog in the first place. I know that I am not the only person out there who suffers from this despicable disease, and I’m willing to bet that I’m not the only one to ever get lost in it. I want to share my story not just because I don’t want to be alone with it anymore, but also because I hope that maybe it can help someone else. I’m not a therapist or an expert of any kind, I’m just a woman who has decided that enough is enough. I refuse to let Fibromyalgia rule my life anymore. I can’t change the disease, I can’t make it go away, but I have come to realize that I can change the way I react to it. So, I’m going to start by putting my story out there, my first change is to stop hiding.