The Beauty Of My Fibromyalgia

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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.

Forecast: Snow And Pain

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I never wanted to be a weather forecaster but I have found if I listen to my body, I truly, can predict the weather. This is not a fun job for me; nor is it a fun job for any people who have Fibromyalgia or another chronic pain disease. There’s a blizzard going on in the Northeast and before I heard about it, I felt it. I felt it in my tired and achy bones and muscles. I couldn’t stand up from a seated position without a lot of pain. I needed to hold on to someone’s hand because I felt off-balance. Some experts say it’s related to the barometric pressure changing. My degree in weather forecasting is not that advanced.

My bones, muscles and body hurt enough as it is. Today, my back and shoulders  and legs are aching and cramping horribly. I am having trouble getting up, sitting down, walking (shuffling) while holding on to the railing in my house for the stairs, one step at a time. I also have the infamous Fibro (Fibromyalgia) Fog that causes me to lose my train of thought or forget something that someone just told me ten minutes ago. It’s bad enough that it’s painful but feeling embarrassed and humiliated is another blog post altogether. I do not understand this mystifying illness; that said, it is hard to expect others to understand it as well.

We’re in the middle of a snow, blizzard emergency now.  I am praying for the electricity and power to stay on so we have heat all night. I’m piling on the blankets, flashlight at my side, candle at the ready….just in case.  It may look pretty outside with snow drifts and the sheets of snow coming down sideways in the light of our windows but it doesn’t feel pretty. It feels horrible, it’s like clenching your teeth in every body part. My neck is stiff and constricted, my shoulders are tight, I feel like the Tin Man of the Wizard of Oz but there is no oil to relieve my pain. I hope for continued heat for all my friends but especially my Fibromyalgia friends because we really know what COLD feels like.

Stay warm my friends, we’ll all get through this together. Huddle under extra blankets and lie still. There will be hot coffee in the morning or English Breakfast Tea with milk and sugar. It’s just the beginning of winter; we have a very long way to go.

We’re Allowed To Have A Horrible Day …..Or Two

Image by lilli2de via Flickr

When I spoke to my friend on-line I told her I was thinking of writing a blog with the title “Losing Hope.”  I’ve learned to wait a little while and see how I feel later on. Granted, passion fruit sorbet and coconut sorbet helped a little. It was probably a combination of the sugar and the unique sorbet flavors that worked so well together.

The morning started with a phone call my husband made to a hiring manager. The good news? He is definitely the candidate that they want! The bad news? They don’t have the funding for the job.  This is the second time this has happened to my husband. He’s been unemployed for a year now. (Anyone know of a Software Engineer job?)  I see his sadness and as hard as I try to boost his spirits today I just sunk lower with him. I’ve been good and supportive but today was too much, so we acknowledged we were blue and then went out for an inexpensive Latin dinner (with a coupon) where he had tilapia (fish)with mole sauce and I had a quesadilla filled with spinach, mushrooms, cheese and horrors of all horrors, green peppers. After I finessed the green peppers to the side, I was happy.

We took our dog out for a short walk after dinner and as much as my joints hurt, and my knee locked, my fatigue overwhelming me, at least I did it. It was one of those perfect, beautiful, warm, dry evenings. It was also something my husband wanted to do and he does not ask for much. So, our 8-year-old mutt, Callie was in heaven, my husband was smiling and after giving myself a tiny push, I felt better too.

There were some “family” issues which bothered me but I got over it with helpful prompting from my husband as in “what do you expect? They always do that….”  Enough said. My mother warned me about not eating too much food on the free cruise and the chubby girl resurfaced and I felt my body inflate and swell.

It’s hard to be sensitive, I can be very empathic but also hurt easily. It doesn’t seem to be a lesson I’ve learned or accepted. I try to “not care as much” but it’s a skill I lack and don’t think I will learn it anytime soon. At least  I’ve learned to get over something quickly which in the past could have been long and drawn out.

I’m vulnerable, to diseases, to emotions, to temperature; we all are.  After trying to fight the knowledge of a cranky,  “snarky” day, I’ve learned (most of the time ) to just give in to it and ride the waves until everything calms down. You never know, maybe the next day will be filled with sunshine,  honey and bright blue skies; it’s possible. Allow yourself to have a bad day or more when you need it and don’t feel guilty about it; we deserve it.