The Papoose Of Pain

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.

Grumpy, Sleepy, Droopy, Cranky? Yes, That’s Me

Image by Jenn and Tony Bot via Flickr

I haven’t had a good night’s sleep for a long time and I want sleep NOW! I need a good night’s sleep because I have Fibromyalgia and an auto-immune disease, Hashimoto’s Thyroiditis and a tendency towards anxiety when sleep deprived. Lately I feel I have jet lag every day even though I haven’t gone on an airplane or visited fascinating foreign cities. I feel bad: achy limbs, stiff muscles and joints that roar with pain. My eyeballs ache, the soles of my feet throb, even my finger nails, unpolished and raw, hurt.

We have been living in one hotel room, my husband, my daughter our dog and I for the past six weeks. We’re doing the best we can since our house has been destroyed by rotted wood, termites and carpenter ants. It’s a horrible situation not to mention the emotional and financial stress. We have stress layered on stress.

We get along fine and try to respect each other except for one annoying factor: cell phones. I don’t understand this generation of teenagers that get text messages all hours of the day and night. My daughter’s alarm, also from her phone, shrieks loudly, picture loud buzzing bees meeting chain saws every ten minutes. It’s hard to go back to sleep after that, my husband and I are old now. We can’t just fall back asleep like our children can.

We drink free coffee from the hotel stand in the morning and snack on food we have in the room and then we have one meal, dinner, out. We can’t afford to eat three meals out a day nor do we want to. I dream about being back in our old kitchen planning a simple meal. When you have to eat out all the time, it’s not that much fun.

We have a favorite diner and it has a dozen pages of every single meal you could want and we still go from page to page not wanting a darn thing. We eat out of boredom, planning where we want to go to dinner can take hours. It’s alright, we have nothing else to do. My husband is still on crutches so during the day I drive him places he needs to go. His ruptured Achilles tendon is healing but very slowly. It’s been five weeks for that too. Why do bad things happen around the same time? Or is it just us?

I cannot see my computer keyboard, my eyes are closing, eyelids thick, thoughts are mixed up and frazzled. Our dog who now rests on the bed is snoring softly; even she knows that 5am is way too early to get up and that we still should be sleeping. I try to nap later on, sometimes I dream that we are back in our home but when I wake up I am sad and upset. I have to remind myself, we’re nowhere close. My dog lies next to me, licking my elbow, laying her head on my hand.  Last night she started nibbling on my toes, tickling me enough to get me to laugh. Sometimes, you have to just be grateful for those special moments.

I’m Sorry, Birdies

Dear Birds Right Outside My Bedroom Window,

I would like to take this opportunity to formally apologize for muttering bad words and complaining about your recent happy chirping while I was desperately trying to get more sleep at 5:30 AM. How dare I complain when I feed you and encourage you to visit?

I love watching all my birds but a special apology and shout out go to the “Cardinal Family” who brighten each day with their flashes of red beauty across a white sky. I feel especially guilty because you KNOW I always welcome you with great love and joy. I always smile when you come and I listen joyfully to your songs and I watch you feed each other; you are a blessing of nature. Again, I am so sorry; please forgive this one mishap. I feel bad enough, believe me. Those who really know me will tell you how sincere I am. If you would like, references are available on request.

Since this happened a few days ago I have been wracked with guilt. There was no reason for me to take my grouchiness and lack of a good night’s sleep out on you. No excuses. Your songs were beautiful, as always, and I know you were just talking to each other and singing and you have every right to do that. Even though my cranky rant was muttered into my pillow, I know you heard me. I am a disgrace to human kind.

I see the bird feeder is running a little low on your favorite black sunflower seeds. For my punishment, I will drag my lazy behind from the bed to the outdoor shed and refill it immediately. I’m sorry that you don’t like me wasting seeds by throwing them on the grass for the squirrels, but they are my friends too. We all need to share and you know they can’t reach YOUR bird feeder anymore.

Rest assured birdies (and no pun was intended) I will not complain again. Instead, I will try to enjoy the (um, early) day and I will sit down at the kitchen table with my extra-strong mug of espresso/Starbucks mix and I will raise my cup to thank you for all the good times we have shared.

Your Friend,

Hibernationnow

please, let me fall back asleep

i fall asleep so easily it’s like i have an instant iv drip attached to my hand, it’s a relief for my aching bones and over-active mind. i snuggle into my favorite position, two pillows beneath my head; my brown hair pulled back in a ponytail with a thin black elastic band. i’m wearing only a soft, red, popeye cotton tee shirt. i dream about swimming and floats and old friends and the artist known as prince and friendly unknown neighbors wearing j.crew sweater sets. in my dreams my son is three again, i don’t need freud to figure that one out. he’s college bound and i am feeling nostalgic, oprah is leaving me too.

i wake up automatically at 4am and at the same time every night for the last few weeks. i desperately want to go back to sleep and i try but it’s of no use. i play every game, try every trick and nothing works. i give up and drag my computer to the tiny extra bedroom/office to see if there is someone awake on the other end of the screen. usually no one is. i know it takes time for me to fall asleep, usually between two and two and a half hours and there is not much i can do about it. i have been through this pattern before, i just want it to stop.

i’m so tired but my head and body are still awake and they won’t give up the fight no matter how hard i try. i try not to try and that doesn’t work either. i notice things in the room that i haven’t noticed before, forgotten dusty books, a paperweight with dainty blue flowers. my dog has followed me in the room, she is so used to coming downstairs with me at around ten for a snack that she is confused.  i sit cross-legged on the bed, surrounded by clean laundry, my eyes wandering to my angel statue, my daughter’s first ballerina shoe that i framed, boxes of writing since high school, a mini twa jet i keep in honor of my father. my whole life is in this room and around it.

i want to be back lying in bed beneath my royal blue quilt, and a an old comforter in a cherry covered duvet. i love any pattern of cherries, they make me happy. i want to sleep but i know i can’t, my head is like a ticking clock. my teeth and jaw ache, it’s probably tmj, i think clinically. i remember i never called my friend back yesterday and i don’t like being rude but it will have to wait until tomorrow. sorry, but of all people i know she will understand. she suffers from fibromyalgia and chronic pain issues too. apparently sleep problems are common among us in the tribe.

finally at around 6:30 i start yawning and crawl back in bed keeping my eyes averted from the clock on my bedside table. i have stayed up long enough that i think it will be ok, my eyes close, again. all the colors become white, the fresh air coming from the window is softly soothing. i beg the birds not to come out and sing for just a little while.

i want outta here

Image via Wikipedia

i’m sicka my body, sicka my self, cranky as all hell for bein my age and my character and my illnesses. so sick i wanna steal someone else’s body and call it my own so i can feel myself for who i really am. know what i’m sayin? i don’t wanna be a granny, too old for who i am inside me. my body doesn’t match what i feel in my heart. i cant be happy anymore least not tonite because now my ear hurts and i dont wanna go to see my doctor cuz i am sick o doctors, doctors o every kind. i got lots of different doctors one for everything, and then some. none of them ever did me much good an i don’t care if they are hotshots. no cure, no care.

i wanta be another person in another place, or maybe me in a different time. i want ta be in hawaii like when i was 30 and in love and slim and my green eyes were dancing and my legs, arms, face, body was tan, like with healthy skin not like some tanner beds they have now. i was as brown as milk chocolate and equally sweet. i was someon way back when and i mattered.

now im just old and hurting and i ache so much all the time that it makes my mind go unhappy and a little nervous ass too. who am i now, i dont like this stranger, this whiny mess, she is not me but afraid she is me. i just dont like her anymore, not the way she is today. bring back that girl with the twinkling, brazen green eyes and the perfectly shaped lips. replace her sagging jowls with happiness and the black circles under her eyes, make them disappear too. you are old now and sick and there will never be a witness to who u were before you got these chronic illness like fibro and hashimotos thyroiditis. you know what it means. it means you hurt all over, all your muscles and all your bones and nothin makes you feel better any of the time except maybe when you sleep. sometimes when i sleep i wake up at 3am and then everything is just worse than usual because things get scarier and you feel really alone. try to sleep tho, because its your only escape from relentless pain. try.

jus remember in the mornin, you gotta start all over again, cuz there never is a tomorrow that is different than today. because sometimes life is not so fair even tho there are people that have it worse. but after awhile when u don’t get a break you think you gonna just lie this way forever and someday get smaller and smaller but you will still be lying on that bed, under blankets except the bed will stay the same but not you, no will just go on and disappear, like angry dust in the air.