Constant physical pain in some part or all of my body has been my reality since about eight months after my son was diagnosed with Ataxia-Telangiectasia in July of 2000. It started with pain in my arms, then my legs, which led to all over body pain. I saw many doctors, had many tests, and no one could diagnose what was causing the pain. After my marriage ended, I tried to live on my own for a while, but ended up in so much distress that my family rescued me. My four siblings came, helped me pack up my three children, my things, and move me to be closer to one of my sisters, Anne. (www.annehills.com) She took our whole family into her home, alienating her own family at times, until we could get an apartment at the complex across the street from her home. She drove me to doctor’s appointments, was my advocate, and at the same time was getting a Master’s Degree in Social work, raising a teenaged daughter who lost her privacy with our presence in her house, and was travelling all over to play concerts of her folk music, which is sublime. The doctor she took me to did not believe fibromyalgia was a valid diagnosis and did his best to find out what was wrong with me. It’s been close to a decade now that he’s been seeing me, and he has finally decided, grudgingly, that if there is such a thing as fibroymyalgia, that’s probably what I have. Lately, I’ve had the additional delight of headaches added into the mix, which was never a problem before. My medication levels have stayed the same for years, and have only gone down if anything. I’m proud of that. Despite the early days when I had to rub Ben-Gay on like lotion and wrap myself in ace bandages from head to toe, I mostly functioned.
Strangely, the headaches have been the most debilitating symptom I’ve had to cope with. It’s hard to read, write or do anything much when your head is constantly pounding. Like most people with chronic pain and/or illness that is an “all in your head” type of dis-ease, I’ve sought out alternative methods of healing. I’ve had mixed success with them. This is not in any way intended to be a “bore you to death”, whiny blog post. It’s more of an explanation for why I haven’t been posting lately, and a plea to the universe to help me figure out the way to heal. I don’t imagine I’m the only chronic pain, chronic illness patient who has become desperate for some relief. Added on to this is the reality that no matter how lousy I feel my son depends on me for much of his care. He is a source of joy to me, but I guiltily wish for respite care at times. He has a wry sense of humor, is an amazing artist, and I’m grateful that he is in my life. Prior to his diagnosis I was a critical care nurse who practiced yoga daily, rode my bike to work, and was relatively stable. Perhaps if I hadn’t already been diagnosed with PTSD years before I was ever married, my physical collapse could have been avoided. I don’t know. It’s hard to know how much the shock of his diagnosis contributed to what came later.
Why can’t I just make peace with the pain? That is one question I have not yet found the answer to. It’s wreaked havoc on the life of our family, even though I was lucky enough to remarry in 2005. Sleep tends to be light and elusive, and few people have any patience with my “illness” anymore. (Why should they, I don’t!) If there was some way to use it to help others that would be something but as long as the headaches are my main symptom, I can’t do much to help others. So, what’s the answer? There probably isn’t one. It’s the perfect Buddhist lesson, forcing me to confront the fact that there is no solid ground under my feet. It’s hard to stop groping for a solution, grasping for health that eludes me. Finding a purpose for it or a way that it can be of benefit to others would be such a blessing. I am so thankful for the blessings others are giving me, and the connections I’m making related to the pain. Valerie Johns and her incredible Jizo‘s and Chibi’s.(jizoandchibi.com) Kathy Tooley and all the wonderful women at Anahata Yoga and Wellness Center (www.anahatayogawellness.com), my family who stretches the limits of their patience to put up with me. (Thanks guys) My incredible husband and precious children, one with an “expiration date” to quote a recent episode of the T.V. show “House.” (www.fox.com/house/) My gratitude for all their love and help is peace in itself. Blessings and peace to all. Namaste’.
An Unexpected Life 