My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life. She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody. I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.
I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.
My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?” “does it stab, burn, tingle, come in waves?” “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.
Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.
I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.
There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.
We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy, that sometimes I need to focus on just by breathing, in and out, in and out. Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.