“Do you think I’ll ever run again?”
“I Hope so.”
Hope is never want you want to hear from a doctor. I want to hear, “Yes, absolutely, of course, you bet.”
Never being much of a glass-half-full kind-of-gal, I take “I hope so” to really mean “No, but I don’t want you to start crying again in my office because I’m barely out of medical school and you’re scaring me with your legal pad of questions.”
Diagnosis: Fibromyalgia. No cure. No specific cause. Some get better, most learn to live with it.
It’s been five months since the pain started. I can no longer blame it on my laptop since it’s now moved beyond my back, neck and shoulders and spread to my hips and legs. I’ve had blood tests; I’ve had an MRI on my brain. So far I am in excellent health except that every day I wake up feeling like a wild animal caged in my own body. In a body that has betrayed me and decided to teach me a lesson about having something to really complain about.
Who knew I’d be 43 and looking back on 42 as cherished days? Days when I didn’t know I would be gripped with horrific pain every day for what looks like, the REST OF MY LIFE. I never thought that “live each day like it’s your last” business would apply to me. I guess no one does. That’s why people whose lives have taken bad turns are always warning the rest of us.
So now I’ve got to pull Lance Armstrong out of my ass and get all full of gratitude and cheesy self-affirmations. I’ve got to not be afraid of searing pain, throbbing headaches. I’ve got to stop crying because apparently it only makes it worse. I’ve got to get excited about going to a therapy pool and doing water aerobics with the elderly because that’s apparently the type of exercise I “should” be doing. I’ve got to consider medication that makes you fat, drowsy, and unable to concentrate. I’ve got to keep saying I’ll get better even though I’m terrified.
I can’t even look at my running shoes without crying. They sit quietly wearing the dried mud of last fall, waiting for action. Apparently it will be a while. At least, the doctor “hopes so.”
I’ve got to find someone who has coped with this, beaten it back. The sad, desperate people who post their horror stories online are not helping. Neither is the woeful Wikipedia. Who writes such medically grim, disorganized crap?
So pardon my self-indulgence and self-pity. I just needed to get this off my chest. I can’t write little stories about the twisted perfection of my small town right now. That was before. How I miss the before.
Small Town. Small Times. 
Heart-warming, this tragedy of yours. ‘Hoping for your best.
I hate hearing this. I really do, but I’ll share something with you. I had a horrific auto accident in April of 1991. My then boyfriend fell asleep at the wheel and with the cruise contgrol at 70 mph, we drove off the freeway and over an overpass and plunged about 40 feet into a semi dry creek bed below. I was asleep at the time; my head in his lap (no seatbelt, obviously) and on impact, I slammed into the dash board breaking three right ribs, my nose to the point it needed a teflon lining in my damaged sinuses, cheekbone, my right tibia, fibula and ankle mortis to the point where the bones were pulverized…literally destroyed to the degree of being bone granuales. I also cracked my right knee. As I went out the windshield, I broke my pelvis and my sacrum, the base of my spine.
I know how you feel. Everyday is a chore and a pain. I’ll be 50 in two months and I feel like I’ll be 80. Everything hurts, because as you’re experiencing now, pain funnels out to so many places because so many parts are connected and/or depend on many of the bones that were broken.
I know our situations are different in terms of genus, but pain is pain. There are days when it’s cold and damp, that I can do nothing but lie in bed or the couch. I can’t sit or stand for extanded periods and high altitudes are absolute hell on every bone brokem…including my face.
My orthopedist told me 17 years ago that I would live in pain for the rest of my life and that it would worsen as I got older, but he also said that I would eventually learn to live with my pain. I remember looking at him and telling there was no way I could ever get used to a constant fully body assault. But he said I would…
And in many ways I have. You become accostomed to the chronicness of the pain and give in to it when it hurts above and beyond normalcy.
I try to walk when I can, but that’s only on good days and sadly, there haven’t been too many of those in recent months.
Is there a positive side to this? To be honest, not really. When people would come to see me in the hospital, they’d take a look at my body in traction (where I remained for just under three months) and then they’d say “How lucky you were to survive!!”.
And I’d think that was such bullshit.!! How dare these people say this to me!! How was it so great to be spared only to live in abject pain and physical limitation the rest of my life? And due to certain pelvic injuries, my ability to have children was significantly compromised. Yet they thought I was lucky to have survived????
I went through my mourning period…which is necessary. LIfe changes exponentially when something like this happens to you. You have to process the life change. And then, human spirit being the miracle it is, you finally reckon with God, the Universe, the Cosmos—nature (call it what you will) and you understand that for better or worse, this is your lot in life. And there’s no way of getting around that fact.t.
Pain is painful. Sorry for the ridiculous platitude there, but I say that because as impossibly as it seems now, you will adjust your life to the pain. You’ll never get used to it; but you learn to expect it and that makes you well aware of the dynamic your body is experiencing. And sometimes, you actually forget about it and even sometimes when you hurt so much you cry, you still continue to live life. Mortals are geared for that. Survival is engrained in our DNA.
Lastly, I really can’t give you any advice. Our experiences are vastly different and you’ll learn to endure your pain your way, as I have with mine. But I can tell you that unless they find a miracle cure for Fibromyalgia, your pain is and will be a part of your life, for the rest of your life. I urge you to accept it. But don’t let it defeat you. On those days when it hurts too much to move, of course, give in to it. But your pain is as much mental as it is physical. You can live with this, trust me, you can.
I mean, why not? Think about the alternative.
If you need me, you have my e-mail. Don’t hesitate to contact me if you want to talk, share, cry, scream, whine, piss, moan or laugh to take your mind off of your pain. I’m here for you. Why? Because sister, I get it. I’ve been there. Hell, I’m currently there.
Best of luck. You’re stronger than you think. I know, because so was I.
Still am.
Best,
LK
Laurie — Thank you for this achingly honest story. I know there are some words of wisdon here that are invaluable, however, I’m going to have to wait a while until I can read this again. It scared me to death. I am so sorry for your pain. I will email you soon. Thanks for sharing so much of yourself.
If you can’t use your blog to vent, where can you vent? I am so very sorry to hear this. Dang it. Please keep looking for the inspirational people online. I think the sad, desperate people with horror stories are probably quick to publish their stories (like the people with horrific childbirth stories), interfering with your ability to be inspired. Please don’t give up!
Thank you – in addition to your feminine substantive self, you are always optimistic. I appreciate that so much.
I’m with Allison on this one: you absolutely must vent/rant/gnash on your own blog. Isn’t that what it’s FOR? Isn’t that what WE’RE for?
I don’t have any words of wisdom (shocking, I know) but I’ve got a spare shoulder, and sympathetic ears, and a hella supply of 2002 PlumpJack Cabernet that we found last weekend. Let me know what you need first.
Wine first, blabbering second, more wine, more blabbering, more wine, then tears…and then, what the hell, one more glass. That’s usually the way it works for me. Thanks Mrs. Waltz.
In December 2005 I was at The Cleveland Clinic in Ohio trying to get a new lung and was given 6 to 18 months to live. I came home to New York and was unable to get out of bed for days.
Doctors sometimes give the worst diagnosis so we’ll be pleased with the best outcome. (just my theory)
Crash. Cry. Drink. Then get up and get on with it, on the days you can. Best wishes to you and your family – peace in your heart and home always.
Barb – Thank you for your inspiration. I hope you continue to be well.
Awwwww, don’ t you worry about pardoning anything. Let it all out.
I have friends who have had to come to grips with other auto-immune disorders and after attempting the typical medically prescribed route, they both changed their symptoms via diet and lifestyle. I do know that a good start is too avoid any inflammatory foods such as tomatoes and potatoes. I can get more info from them if you like. Good luck and hugs to you.
Karen
x
Thanks, I am going to check into this.
This is a rough post. I am sorry that you are going through it. But I agree with Allison…don’t listen to the bad posts out there. Remember that most people are very vocal when there is something to complain about…but too busy and happy to be vocal when things are going right. I am sure there will be many hard days but I know there will be some good ones too. I agree with Laurie that you will get used to it to a certain degree, but keep on searching for the things that may help you. I know when I had my third back surgery (after 10 years of chronic pain) people told me I had an overnight personality change…the pain can make you a different person over time. I hope that you find a way to avoid that. I will be thinking of you, and it always sounds so LAME but “stay positive!”
I’ve been MIA for a while, and then I came back and saw you had posted and was so thrilled. Now? Not so much. I wish I had never read this post, only because I wish you had never had to WRITE this post. This breaks my heart.
When he was 45 (and I was 5), my father had his first heart attack. He spent the next 16 years of his life in pain as his heart muscle slowly deteriorated to uselessness. Sadly, Maleesha is right. Pain can change people for the worse. The man my father was when he died is not who he was before 45. I think this is the biggest battle you face: to not let the pain determine both your future and how you face that future. Definitely explore alternative therapies, but don’t forget the mental and emotional side as well. Faith, exercise, counseling, whatever it is that is your touchstone, I implore you to keep going back to it.
This sounds so preachy, but I mostly just wanted to reach out. Keep writing to us. We want to hear about it.
hi there:
I left a comment on my blog in response to your comment, if you have to check it out – hang in there and stay strong! please let me know if you have any further questions.
Best,
Minnie
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