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.

Why Can’t We Just Say “Life Sucks?”

When someone asks me how I am doing I usually say” okay.” ” Good” works too in a pinch, “doing well is always a favorite”; a real crowd pleaser. I ‘ve tried the honest, or blank, neutral face and the politely depressed pout too but that just turned people away. Some people just don’t REALLY want to know how you are simply because they don’t care or they have their own stuff to deal with. I  don’t want to confront or ambush innocent people nor do I want pity (ok, I admit sometimes I would like a little pity).

When someone asks me how I really am I refrain from saying  “life sucks,” even though at the moment (or for the last two years) it has. Why?  Is it just not polite enough? Is there some filter we need to uphold appearances even when life is giving us a beating? Do people not want to hear the truth? If someone told me that their life sucked I would be more than willing to listen, to advise, if appropriate, to help them feel better.

There’s: Unemployment. Health and Safety problems. The Economy. The BP Oil Spill. Cancer. AIDS. All illnesses. Death, Dying and Despair. The Environment, the World at large, Fighting, and Abuse. There’s also Terrorism, Uncertainty, Crime, and Fear. In addition there are the “ism’s” : Racism, Sexism, “Religiousism” and” Ageism”. I know we can’t dwell on these things because we would never again want to leave the “relative” safety of our homes but once in a while why can’t we acknowledge that we’ve gotten a raw deal, the short end of the stick, even the much wanted last piece of milk chocolate that someone just popped into their mouths with a  greedy, toothy, lopsided grin.

I know it’s not polite to use the “S— word but it feels so appropriate. Life stinks doesn’t pack a punch. “Life is life” sounds too esoteric. “Life is” sounds like a Philosophy 101 class. Maybe that’s why I have this blog to vent because it isn’t appropriate to tell the truth, or to tell the truth the way I want to. Life can be difficult at times. Let’s leave it at that.

We Laugh, We Cry

6/24/10

Last night, on instant chat, I talked with my friend P. for a long time. She and I are sisters in this crazy world of  chronic pain and difficult, unusual symptoms. The auto-immune disease that I call my own, Hashimoto’s Thyroiditis,  has its own set of innate problems, cells attacking cells. She has more physical pain and I wish I could take some away from her.

When we started talking, we were both subdued. We discussed our achy, ouchy  (I know that’s not a real word but it fits) symptoms. We were tired, tired of being tired, tired of being lethargic and uncomfortable. We talked about our day (some would consider this complaining but in our world it really isn’t). We were merely reporting and commenting on “the symptoms of the day” (you’ve heard undoubtedly about the ” soup of the day” well, this is different) and sleep deprivation, medications and diagnoses. We sound like we are pharmaceutical “reps” weighing in on different medications (we just don’t get paid for it and no free samples).

I got so frustrated at one point that I decided we were in desperate need of a new direction for our conversation. We decided on fantasies. (No, not that kind, get your minds out of the gutter!). We fantasized about a huge beach house (for me) and a very small one for her (so that when she cleaned it, it would be manageable. ) In MY fantasy, I don’t CLEAN my house, I just live luxuriously in it. I wanted neighbors, she did not; I kid her about being anti-social, she kids me back.

P. asked me questions about my ex-guru doctor and I updated her that the ex-guru doctor was still the guru doctor and I loved him (gee, had I not?) again, still, anew.  We’re a fickle bunch, we are.  She told me about natural remedies and I grumbled about how expensive they were and that I could barely leave the house to get the mail, much less drive to a costly massage or have a homeopath give me their remedies. (I’m sorry but I still have somewhat of a problem with the word” remedies”). We encouraged each other to plow forward, and she reminded me that “at least I had had one good day” which I was beginning to lose sight of in my quest for another.

We ended up laughing on both sides of two computers when I mentioned that perhaps we could have a “reality” show of all of us in the chronic pain/auto-immune/fibromyalgia/ CFIDS  and “other”categories.   I guess you had to be there but we took it so far that she was going to pitch my idea to producers. We LOL’d and ROFL’d so much that I had to help her up (virtually) from her  chair at home.  It was silly, it was ridiculous but it  felt so good to laugh and smile. In our world of chronic pain/illness  it’s an actual honor to be able to make one another laugh or put a smile on someone’s face.

I have been helped by so many kind people on this blog. But, I am the worst technical person in the world. It’s a wonder that I can even manage this simple blog (you’ll notice the elementary style with no photos or fancy techniques-sorry). If I were more technical, I too, would cut and paste and give awards (that are so special to me) to all my dear friends on this network (you know who you are!).

In my own way, I just wanted to tell everyone how thankful I am for the support, the humor, the  advice and encouragement and the friendships that have been made. We may have different symptoms but we have a common bond.   We take comfort in each other because only we can truly relate to one another. Doctors may sometimes not hear us, loved ones may not always understand us and we may feel a little crazy at times but, it’s our glue, our bond, that keeps us together.

Dedicated to all my blogger friends and to my friend P.