The Papoose Of Pain

papoose, Otavalo, Ecuador

papoose, Otavalo, Ecuador (Photo credit: lumierefl)

We carry our illnesses like a papoose; they clutch us firmly yet we can’t put them down for a minute to rest. There is no relief from chronic pain. I used to think that sleeping was my cure; it used to be but not for a long time. Sleep was my escape for any emotional or physical pain, now it just adds to my frustration. I can fall asleep easily enough (with medication) but then I go through long periods of time when I wake up at 3:30am and am up to at least 6:30am if not longer. Sometimes I fall back asleep for a few hours but it is restless and fitful, with anxiety dreams, tossing and turning.

Who are we, these invisible people of pain? We are mothers and daughters, sons and fathers, sisters and cousins. We were not born this way but one day our “normal” lives changed, forever. For me, my life changed with menopause at age fifty. My body fell apart and it hasn’t been the same ever since. I developed thyroid problems and body aches and pains that left me limp, in bed, groaning in pain. No doctor could help me, my internist looked disgusted as she left the examining room, leaving me inside, alone, weeping with pain. “There’s nothing more I can do for you” she said and slammed the door. I felt bad that I had bothered her, actually she made me feel bad; it was NOT my fault.

I’m not saying I ever ran marathons but I didn’t have to wait to plan the day’s activities until the very last moment. I could plan going to Central Park to meet a friend a week in advance, or to see a new Woody Allen movie with a friend, or go drink a mimosa with brunch. Now, I always have to add: “but I will call you in the morning to see how I’m feeling.” My true friends understand; I’m the one with the problem. I feel ninety years old and handicapped, actually my eighty-five year old mother is in much better shape than I am, for that I am grateful.

I’ve given up hope on a cure for the future, I’m happy that the Rheumatologist I have not only believes in Fibromyalgia but takes it seriously and wants to help me. He also appreciates me because I understand the parameters, there is no cure and when he asks me how I feel I tell him “that under the circumstances I have been doing fine.” I am not bitter, I am sad once in a great while, and enormously uncomfortable. I thought losing weight would help but I lost twenty-five pounds and the pain is still the same.

For the last two weeks I’ve been lying down in the back of our car for four to six hours per day; tomorrow after a grueling tour visiting my daughter’s second college choice, I will sit for another four hours going home. Once home, I will take a hot bath and put on the jacuzzi jets and there I will stay until I can stop screaming silently with pain.

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Extreme Sports? Bring it on! (NOT!)

Inês, a Girl walking in the beach. Porto Covo,...

Image via Wikipedia

You Jump, I’ll Watch
Extreme sport? Ha Ha Ha Ha Ha. You have got to be kidding me. I tremble at the word “extreme.” Sure, some of you will write about hiking mountains, and bungee jumping, massive triathalons and motorcycle marathons…..but for me? I’d be happy if I could walk every day at a consistent (medium) speed. Right now, with Fibromyalgia, I can’t even count on a slow, measured walk, twice a week, because of joint and muscle pain. I have no interest in “extreme sports” but to be honest, I never did and never will. I never was a big risk taker and the adrenaline I would get from fear alone is enough to make me pee in my pants. When I was much younger I once thought about sky diving or “parachute jumping” where you are shoved out of an airplane with some cord to pull so that the parachute opens. The trouble with me is, when I am stressed I forget things. Forgetting to pull that cord for that parachute? Not a wise choice. I’m staying home.

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The Beauty Of My Fibromyalgia

Red berries

Image by freefotouk via Flickr

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.

Daffodils, Pink Polish and Methotrexate

March 8, 2010 was the first day that I did not wear my heavy, dirty, dark brown Northface jacket in many, many months. After the horrendous winter we had( 21 inches of snow for just one of the many storms) I was happy to shove my jacket deep into the closet and not look at it again until next winter. I know there is no guarantee that we will not have another snow storm or frozen temperatures but I refuse to bring out that jacket again even if I wear 7 layers of clothing instead. That ugly old jacket represents winter (actually the last 4 winters) , and feeling cold, tired and old, armed with mittens and scarves and boots and being afraid (really, being very afraid) of the slick ice and the black ice and the ice- ice. The forecast said it would be in the mid- 50’s and sunny and I had every intention of taking advantage of the reprieve. It smelled and tasted like the very first hint of Spring. You could see the pre-blush on the trees, the buds not yet out but inching forward, little by little.

It definitely was a day for doing errands outside, smiling; no mittens, no coats, no hats; no need. It was a- happy-to-be-alive-day, that first recognition that spring really, truly, may indeed happen sometime soon. It was the day to go to the nail salon for a special treat and have them put pink polish on my pretty seashell toe nails. The person next to me was having BLACK polish put on her nails, both hands and feet.  Maybe next year at the start of winter, I will do that in PROTEST  but certainly not at the END of winter.   It was fun to sit with other moms and talk, chatting about colleges for our teenagers, harmless gossip in the neighborhood, new restaurant reviews. It was a day to breathe and laugh and enjoy this special day, that came, unexpectedly, like the purple, yellow, blue crocuses that force themselves out from the solid, rock-hard ground.

Even though the weather was perfect, my medical condition was not.  I had quite a bit of  trouble getting in and out of the car;  my body hurt, but my soul was smiling.  When there is a perfect baby- blue sky, 56 degrees and a sunny day, all your aches and pains feel just a tiny bit better. They don’t hurt less, they just feel less awful. It’s a state of mind. The medicine that I have to take every day for the rest of my life, (Synthroid, Methotrexate, Plaquannel etc.) will not change, but these rare effervescent days brighten my mood.

It was not  a day for hearty home-made thick pea soup with smoked ham but rather, a piece of French bread, some Gouda cheese, and glistening, seedless black grapes.  It was wearing a soft, gray, cotton T-shirt to bed, the windows open, pillows plumped, drifting off to sleep, clutching my  pink fuzzy blanket in one curled hand, still smiling.

Dedicated to Dr. GS: Thank you making me feel better and helping me to smile again.