I’ve been living with chronic pain off and on for several years and that pain has become the worst it’s ever been over the last four+ months. It used to be muscular pain in one part of my body at a time – my back, my shoulders and neck, or my feet – except during intense physical exertion when I would feel it all over.
Now I have musculoskeletal pain in many places – back of my head, neck, shoulders, ribs, back, hips, ass, thighs, knees and feet. I also have a couple tender spots in my left arm and shoulder that radiate pain differently that the other places.
I experience pain every day. How much and where varies, dependent on what seems to be a wide variety of factors, from temperature to movement to pms. The primary focus of my attention is now my body (rather than my heart and mind), how much I’m hurting on any given day, and what capacity I have to give to myself, my daughter, my loves, my friends and the Imps. I have far less to give than I used to – loves, friends and the Imps are all suffering a lack of my presence (which is hard to live with).
The truth is that I’m looking at a diagnosis of fibromyalgia. Cultural references to fibromyalgia had me believing it was a psychosomatic disorder, which is one aspect of my vulnerability – and shame – in facing it. Fortunately, my research tells me differently. The medical community has been aware of fibromayalsia for over 100 years and now considers it to be of biological origin within the brain.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.” The Mayo Clinic
I’ve been living with minor chronic pain as if it was a normal part of life for many years. I always assumed it was because I was heavy and out of shape (even though none of the many heavy, sedentary people around me seemed to have the same problem). Now I have a sense that I am one of those people in whom fibro has built up over time.
I also wonder about genetics. My mother was in pain for as long as I can remember, first in individual parts of her body, and then it seemed to spread and worsen. She was on morphine patches near the end. For her, the pain had become unbearable, and may have been the source of her lifelong battle with depression. If she lived with anything like I am experiencing now, I have a whole new sense of empathy for her. Maybe she never got better because she was never properly witnessed, diagnosed and treated for her actual experience rather than individual doctor’s limited perceptions. I know she suffered mistreatment by the medical industry, being prescribed contraindicated medications by multiple physicians, the consequences of which wreaked havoc on our family. I’ve had my own issues with doctors as well, taking 10 years to diagnose a common gynecological condition. I find this new possibility for my mother’s story to be viable.
At the end of 2010 and beginning of 2011 the pain mostly got better, especially after I lost 30 lbs, only flaring up during intense physical times (like producing an event). But over the last four months or so, it’s been getting worse. Before the pain I had significant sleep issues for a few months, apparently another symptom of fibro I just lived with best I could. I sleep better but I’m now in pain on a daily basis to varying degrees. My muscles are tender all the time. It hurts to do anything for too long – even sitting or laying down. I am very sensitive to pressure , so that only the softest furniture can be comfortable for more than 1/2 an hour at a time.
Like any chronic condition, some days are better than others.
The thing about me and pain is I refuse to take anything stronger than ibuprofen, at least as long as I continue to be functional. Because my mother died of narcotic addiction (I wonder if it was also the cause of her psychotic break the last year of her life), and I’ve watched other people suffer from the addiction to pain medication, I refuse to go down that road. I would rather hurt than risk the horrible things those medications do to the body and mind.
So I’ve been hurting. A lot more than I’ve been admitting to those closest to me, or even allowing myself to really feel. My life outside of work right now is spent mostly in bed with my Love, getting high on weed, watching movies and television on dvd to distract myself, resting because work takes nearly all I have (especially since I’m working harder and more than I ever have in my life, which is both wonderfully stimulating and exhausting mentally, emotionally and physically).
Over the past couple weeks a lot of sadness and anger has come up about my situation and now I’m here writing. I am finally speaking the truth of this experience the way that I would my emotionally based ones.
I have a lot of judgments about long-term illness that I’m having to work out. I’ve spent so long in woo-woo land and on the self-development track that I’ve come to see long-term disease as a failure in my evolution. According to many spiritually oriented teachings around the body-mind-heart connection (which I know to be real because I’ve actively worked with it before), if my body is this fucked up, then I must be equally as fucked up in my mind or heart (and of course being on anti-depressants only enforces this belief). This is what I’ve allowed myself to be conditioned to believe after all these years psycho-spiritual research and practice.
Yet, I can’t help but question those beliefs now. I am happier and emotionally healthier than I have ever been. I am very happy in my work. I am in the healthiest and happiest relationship and friendships of my life. Things are great with my kids and with the Imps. And I feel that I’ve experienced a lot of healing and evolution in the last couple years around my deepest woundings. It doesn’t resonate with me that this pain is psychologically induced.
What does resonate is that I have a biological condition that has been flaring up in various ways for many years without relation to what’s going on in my emotional life. It resonates that I’ve experienced depressed moods and anxiety because of this condition, rather than those things causing it. It resonates that combined with my PCOS, another biological condition, I have been at the mercy of my biology for a long time, and perhaps have never been as crazy or mentally out of control as I believed all these years.
I have been and continue to be so damn hard on myself.
Since last September I’ve been resting and I’ve been hiding. I don’t want to be one of “those people” who acts and talks like a victim of my pain, who is defined by illness. And I don’t want to become a burden to my loved ones. I’ve known many of those people and I’ve seen how their victimized behavior impacts the world around them. It’s not pretty.
However, I am on a mission of self-love. It’s not loving to myself to try to hide what I’m experiencing or to keep myself from the support of my loved ones. I know the power and importance of witness and loving support in our lives. I have been denying myself one of my most basic needs.
There are ways I have been loving myself. Over the past two months I have become present and dedicated to my health, including nutrition and movement. I have overhauled my diet, take several supplements (most specifically indicated for chronic pain and inflammation), do gentle yoga daily, and journal my food intake, pain levels and emotional landscape.
Instead of just living with the pain and trying to push it in the background as I have for so long, I am facing my reality. Earlier this week I went to my doctor to have lab tests taken to rule out any other possible causes (arthritis), but she says my symptoms sound like fibromyalgia. As I read about the symptoms, I can see nearly all of them on the road here (including the IBS I experienced for a few years and the sleep issues I’ve been having off and on the last three years).
I’m honoring the truth of what is, striving to be honest about my experience without being a burden or a victim.
I want my friends to know I really miss you. I haven’t been around or talking much about my process when I am because I don’t know how to deal with being in pain all the time in front of people. My process is primarily about dealing with my physical states and how they impact how much energy I have and where I use it. I desire to continue living life to the fullest of my capacity, however diminished it may be on any given day. The Universe has brought me a powerful opportunity to practice self love and I’m doing my best to navigate it. But I don’t know how to talk about it with the same vulnerability that I do my emotional processes. There is some kind of shame around physical illness for me, maybe because I’m ashamed of how it ruled my mother’s life. Or because it’s something I little no control over. While I can eat well, take supplements and lose weight, it’s possible no amount of personal work is going to make this go away. There are also cultural taboos in talking about illness, an inherent sense of discomfort, maybe because none of us know what to say in the face of suffering we can’t change.
I’m striving to bring light to my darkness, to show you my cracks where the light gets in. As Kelly Diels recently said: “Cleavage is where I start my writing: the breaks, the cracks, the fissures, the wounds, the shadows, the caves. I mine them for joy. Cleavage is what I try to write about and through. Cleavage is the lines that shape us.”
This isn’t where I expected my journey to lead me this year. While my self-love mission was partly inspired by the pain experience, I didn’t realize it would become the center of it. These are not the lines I expected to shape me. But I will mine them for joy. And I will share my story. Because that’s what I do. Share the vulnerable stories that are hard for other people to tell. There is a story in living with pain. There is a heroine’s journey to be had here and a love story of some kind. I will not be defined by my illness, but I will let it shape me into a more loving woman, as every painful moment in my life has before this.
And the Radical Mystic will find the beauty of the Divine in this, as I strive to do in everything.