As most of you know I have been dealing with Fibromyalgia and Chronic Fatigue Syndrome since 1997. It is a hellish disease that shows no mercy. It takes over your life, embeds itself into every thought, leaves you asking yourself if you can actually face it one more day. That is what it became to me, a challenge really, just to face it ONE MORE DAY. I hurt when I moved, stood, sat, laid down…it didn’t even give me the relief of sleep. In fact, I think that was the worst part about it. It never let up. There was no small moment in a 24 hour period when I could just breathe with a sigh of relief. I felt like I could have sold my soul for just an hour where I wasn’t losing my mind with pain.
I tried every treatment known to man. When I lived in Virginia I even hooked up with a doctor who freely gave me heavy duty narcotics until my body had built up a resistance to them and then I had to not only deal with the inescapable pain of Fibromyalgia but now I had to contend with mind numbing withdrawals to opiates. It was about then that I began to entertain thoughts of suicide…I had lost all hope and I was left with this simple question: Can I live with this? Do I even want to?
I finally beat it. When I say beat it I mean that 99% of the time I feel pretty good. But when I get really stressed or sad I will have a flare up. It takes about 2 days after a stressful event for it to show up but it does and it always knocks the wind out of my sails. It took almost 20 years of my life. Most of you reading this (especially those of you who are suffering everyday with this bitch) are asking “So how did you get rid of it?” Well…I went a very unconventional route and its not one I am comfortable disclosing in a public forum because it is technically illegal in this country. But I will say it was a natural remedy that grows unaided by pharmaceutical companies. I also did various other things that I think in conjunction with the medicine I did take finally got this monster under control. Hypnosis, meditation, Maitri Breath work, diet, lots and lots of water and now Hot Yoga.
This topic came up for me today because this morning I opened up my Facebook page and clicked on a link to a blog written by a beautiful artist in my area who is PISSED. She is pissed she is sick and she is pissed at feeling like it is her fault. reading her words was like getting hit in the stomach because I know exactly what she is talking about. I blamed myself for my illness. I blamed myself because I believed everyone when they said I could heal myself, that I was the only reason I wasn’t better, and that hurt most of all.
Fibromyalgia is an autoimmune disease. The body is actually attacking itself. My body was attacking itself. I was painfully aware of that. All I heard was that my anger, or depression was the real reason I hurt so bad so stop being sad or angry. I was told stress was causing it so don’t stress. It was all my emotions that were creating this nightmare so reign in my emotions. Take a walk. If I would just get out of bed and take a walk I would feel better. Go to a yoga class, meditate, just breathe. If I did those things I would be cured. Let me ask you something….would you tell some one suffering from Alzheimers to read a book to get their memory back or would you tell someone with cancer to eat more oranges to cure their cancer then tap your foot at them whispering tsk tsk because they didn’t get better? I think not. But those are REAL diseases aren’t they? it isn’t their fault because the western medical community has defined cancer and Alzheimers as bona fide diseases which they can then pumped pharmaceuticals at while draining your wallet.
All diseases…all of them come from a disruption in the body-mind-spirit. That’s why they are called dis-ease. There is discord between your body, mind and spirit. BUT until you can get the right kind of tools to manage the disease you will be sick. Whether you can see the illness or not, whether it is accepted as an illness by the so called experts or not, it is your reality none the less. So really all the self help books and well intended advice does to a person mired in pain is make the person feel worse. That’s right…..worse. Because essentially you are placing the blame for this illness on the very person that needs the most help.
So here is what Fibromyalgia taught me. Stop judging the pain and yourself. Just STOP! Instead witness it. Your body is telling you something. Learn to listen to it. I am not saying this is easy. Its not. But I have learned to love the pain instead. I welcome it in when it arrives. I imagine myself greeting it at the door, pulling out my most special seat of honor and I serve it the best, most expensive tea in my house. I thank it for being there and I ask it why it has shown up. And as I listen I let it cry and throw a tantrum and then I enfold it in my arms and I love it. Just like a child that is so angry and frustrated. I don’t get mad at it…I just let it scream and carry on while I smooth its hair and rock it while singing a lullaby. Sounds incredibly stupid doesn’t it? Well this is what works for me. I am not by any means saying it will work for everyone. Then I cry and cry and I wrap my arms around myself and I tell myself that I am loved and that I matter and that my feelings matter. I love all the grief, sadness, anger and despair that surface. I tell myself that I am going to be okay because I am here to love me always. I give myself all the warmth and compassion and security and love that I want so desperately from others. I have learned no one can truly give me what I need but me because ultimately I am the only person on the planet that can know and understand. After all the messiness of pure surrender happens I wipe my nose and I breathe. And I thank the Great Mother for giving me the opportunity to live and love this body I am in. I tell her all the things I am grateful for and the more I start listing the more shows up. I pamper myself with hot tea and a bath and sweet music and I may even write a bit if I feel like it. Most times I sit wrapped in a blanket in the dark and just sit with it. All of it. The pain, the feelings, the love and the gratitude.
This is what I do. For those of you who suffer, please do not think I am minimizing your pain. I am not. And this may never be your process. Living with Fibromayalgia is a deeply personal and lonely road. No one, not even me, can know your reality. But I do have an idea. And I hold you in the deepest seat of compassion for this walk we walk is full of grace but it takes courage. A lot of it. Anyone who walks the road of Fibromayalgia is a warrior. And all of you are my heroes.
I only got to this place of healing by doing very hard and frustrating work for 5 years. Most of the time I just wanted to give up. But one day it all just came together. Mostly I let go of the Story that got me to this place. What is the Story? Its the bullshit your parents, your siblings, your friends and teachers, lovers, spouses and children put on you. And you bought it hook, line and sinker. The Story is the bullshit you tell yourself. The Story is what manifested your dis-ease. That story is the hardest thing to shake than you can ever imagine. In fact it will be something you have to constantly fight your entire life. Every single person on this planet has a Story. The people who don’t accept are the ones that are healthy. But for those of us that accepted it because due to our personality or circumstances didn’t know what else to do with it struggle with addiction, pain, suicide, violence, and a number of other issues.
Fibromyalgia taught me to love myself. It taught me to see how freaking awesome and beautiful I am. It taught me what it really meant to love. I have no more fear, which is really all the story does for us….it makes us afraid. Afraid to feel, to be happy, to have compassion for ourselves. Love teaches us that all of this is just a damn illusion anyway. Its not real. I am not my pain. I am a spirit that only knows love. And Love heals everything. Truly Love is All there is.