Tag Archives: fibromyalgia

How I Spent my Birthday

…or, is there any reason for a 51-year-old woman with fibromyalgia to go zip-lining?

It was supposed to be a Chopin recital in Blacksburg. Garrick Ohlsson. Only it got cancelled because of a scheduling conflict. I’m not all that surprised, since I was wondering why a pianist of this magnitude was coming to Blacksburg in the first place.

So, hubby had already scheduled to take the day off, and we had nowhere to go. Alecto sent me Maxwell’s zip line commercial for my birthday, and that got me thinking. Since I’d just been to the high country for the annual ski retreat (think 35 teenagers, 10 adults and Ski Sugar, it’s scary) I knew there were zip lines around. There are billboards all over the place, advertising the adventure. One interweb search and two clicks later, there it was. Hawksnest. I emailed hubby at work: “Can we go ziplining? Please??” Knowing full well that he was NOT interested in doing anything like this.  He gets sick riding the Teacup at the fair; he ain’t gonna do this.

Only he did. He answered, “I’ll do it. For you.” So, we got up the next morning, dressed appropriately and headed up the mountain. He didn’t speak, at all, until we arrived in Boone, early. We checked out the student housing he’d drawn the plans for, talked about getting food and decided not to. Then we headed to Seven Devils, NC. Switchback roads galore.

Hawksnest used to be a ski resort. Now it’s snow tubing and the zip line course. There were several people snow tubing. We were still early, so we wandered around a bit, then sulked our way into the zip line office. They had us scheduled to go out with another group in an hour. But, one phone call and 5 minutes later, there were two guides suited up and ready to take us out. First we had to sign the release that says, in essence, that the resort is not responsible if you die during your adventure. Hey, I had to sign the same form many moons ago when I went white water rafting on the French Broad. Not much white water-it was a class II/III ride, the first rule was “no splashing”, and as soon as we were all in the water, what did our guide do?  Splashed us repeatedly until we were soaked, of course.

Harness, hardware, helmet and gloves. Check. Out we go, up the steps to the first platform. Five minutes of instruction and I’m attached to the line. Good thing the guide said it was ok if you wound up backwards, because I did. Then it was hubby’s turn. Did he turn backwards: nope.

Long story, short. Nine lines, plus a swinging bridge. Hubby performed like a pro. I had some teensy issues, and one rescue stop that was AWESOME. It took an hour, and we were back in the office, peeling off gear. I was grinning. Hubby wasn’t green. We’re ok.

On the way back down the mountain, hubby is speaking to me again. After some debriefing, we decide that I would definitely do it again, and yep, he probably would too. We learned a lot about ourselves during our adventure.

Which leads me to the original question: Is there any reason for a 51-year-old woman with fibromyalgia to go zip-lining? You know the answer, but just in case, I’ll spell it out for you: YES!!!! YesYesYesYesYes!!!!!!!!!

Why? Well, because

I learned that it is essential to trust your gear. It’s designed to take care of you, so let it. I didn’t learn this lesson very well until afterward, when my biceps were so stiff I couldn’t move my arms. I was holding on to the gear so tightly, as if it was all up to ME to keep myself from plunging to the snow tubers below. Our guides were amazing to watch, gliding across the lines, flapping their arms like birds, or just laying on their backs, riding the wind. It was right there in front of me, but I didn’t see it until AFTER I was suffering from my lack of vision. Hubby didn’t have nearly as much trouble with this one as I did.

However, hubby learned (and I learned through osmosis) that fear is crippling. He didn’t speak to me on the way up because he was TERRIFIED of what we were going to do. As it turns out, his fear was unfounded. Now he’s thinking about fear and what he’s allowed it to do in his life. And so am I.

We both learned to trust our teachers, and sometimes teachers don’t look like “teachers”. At other times our  teachers are the same age, or younger, than our children. Maybe our children are trying to teach us something while we’re trying to teach them something else?

Listening is important, and can mean the difference between safety and potential danger. The same is true of observation. Shut up and look at what’s going on around you, ok? Again, that works both ways with our children. We all need to listen more and observe more and talk less.

I’m sure there were other lessons in there that I can’t exactly get from by brain, through my fingers, and into this text box. But they ARE there, and they will make their presence known when the appropriate time comes.

I didn’t really address how the lessons apply directly to fibromites. But, if you are one, then you should see your part as it goes by.

And the most important thing I learned: If someone loves you enough to say “Yes, I’ll do it, for you, even though I am terrified”, then, well…that’s what love looks like.

Pure. Adrenaline.

about house and Home

Housework is not my thing. At all. It was sooooo nice to be in the mountains, in someone else’s sparsely furnished house. No messes, no clutter. My house is a disaster. It should have yellow hazard tape around it. Really.

Remember the contractor that was going to redo the windows and siding on our house, oh, about 6 weeks ago? Well, they came Tuesday and did the windows. It rained on Wednesday so they didn’t come back until Thursday to start on the siding, which was totally OK because Wednesday was move in day at college for Wubby. He packed up the car and the van and off we went like it was nothing. Only we forgot to pack the sheets (twin XL, specifically for college dorm rooms) so by lunch time he was back home to get the sheets and eat. Then he was gone again.

It’s probably a good thing that he’s only twenty miles away because I’m not sure who misses who the most. I know his little sister misses him something terrible. And after all the mommy-ing and fussing and prodding….I miss him something terrible myself. He called from the dorm the first night and said things were ok but he was homesick. Twenty miles away and he’s homesick. And four years from now when it’s his sister’s turm, I’m not sure she’ll be able to leave the driveway. She was homesick when we were in Arizona, and we were all there together! She’s definitely a home girl.

I look at my kids and wonder how it could be that they are, for all practical purposes, grown. And how they could be such home-bodies. Then I remember growing up, moving a lot, and home wasn’t really a place. Home was where Mama and Daddy were.

My energy level has been non-existent this week, partly because we found Elk Knob last Friday and hiked to the top and back. It’s a beautiful place. From the summit you can see up into Virginia–White Top and Mount Rogers; Roan Mountain (I think) in Tennessee; Grandfather Mountain, Beech, Mount Mitchell, and tons more North Carolina mountains. The hike will, one day, be very pleasant. It’s a new state park and the trail is under construction. The first little bit is very easy. Then the trail just ends and you’re left with an old logging road that goes straight up to the top. One mile and 1000 feet in elevation, straight up. It’s a difficult trek. Even the kids, who went lickety-split all the way up said later that it was a hard walk. I stopped several times, thinking I just couldn’t go another step. Then I’d muster up some courage or stupidity or something and go some more. Hubby kept encouraging me, feeding me blackberries. A few yards shy of the summit I sat down on a rock and just cried, saying “I can’t do this anymore. Let the fibromyalgia win. I quit.” (Actually I usually say “Let the Wookie win.” Our family lexicon would be frightenly dull without movie quotes!)

But it wasn’t the hike that I couldn’t do any more. I think I realized, for the first time, just how close we were to watching the first fledgling leave the nest. What I was really grieving was not the limitations of my stupid fibro. I was the end of my son’s childhood, and maybe the end of my “young” adulthood. He’s out there now, in the world, learning to make it on his own. Yes, we’re helping and we’re always here for him, like tomorrow after church when he’ll be here looking at the outside of our house and shaking his head, and then packing up more stuff from his room before he goes back to school. I guess you don’t really grasp how monumental the task of parenting is until you let the first one go. At least I didn’t.

So, about home. It has always bugged me to hear someone say something like “Look at the beautiful home.” It’s a house, definitely. It might be a home. Then again, it might not. A house is shelter. A home is relationship.

If you’re about my age and you grew up in this part of the country, then you might remember that Beech Mountain used to have a theme park at the top called “Land of Oz.” It’s gone now, but the gazebo is still there. Back in the day there was a sculpture of Dorothy and Toto in the center of the gazebo, with the quote from the movie:

if I ever go looking for my heart’s desire again, I won’t look any further than my own back yard. Because if it isn’t there, I never really lost it to begin with!

For me, in terms of place, home is the mountains, even though I don’t live there now. But home is really where my family is. Home. It’s the messy house where I sit pecking away on my computer, listening to the TV as my little girl sits on the couch, gnawing on beef jerky. And where my husband is currently crashed in the bedroom after spending the day painting gutters. And it’s the house across the way where my mom lives now.

And, in spite of the messiness, it’s where I wanna be.

Via Dolorosa

Lent: from darkness, through death and into resurrected life.

It’s a common theme that takes many forms, a metaphor for the Christian life as well as a metaphor for many of us who’ve lived through brokenness and now walk the path of healing.

Via Dolorosa, the way of suffering. Literally, the path that Jesus walked through Jerusalem from his condemnation to the place of his execution. We all walk the path of suffering during seasons of life. They are difficult steps to take. We’ve all worn these shoes at one time or another. And sometimes we tend to think that our own brand of suffering is worse than everyone elses. But it’s not.

 I have fibromyalgia, which means I have pain, almost daily. Research suggests that people with fibro experience pain differently, such that what feels like intense pain to me would more than likely go unnoticed to you. If I could magically hand my pain over to someone else for a moment, that person would probably want to know what all the fuss is about because, for him, there would be no pain. For this reason, many people, many medical professionals, deny the reality of fibromyalgia. I’ve dealt with doctors in the past who denied my pain, who told me that I didn’t hurt, as I sat there looking at them in tears from the pain of physical examination. I don’t care if you don’t understand my pain, or don’t believe I have pain. But please don’t tell me that I’m not feeling what I feel, because you, whoever you are, have no idea how I feel. You are not me.

Fibromyalgia has a red-headed stepchild called depression. Think about it. If you hurt all the time, you might possibly become depressed. It’s also possible that a person can be susceptible to depression and, as a result of the effects of depression, have pain. You want to know something? It doesn’t really matter which one came first, the depression or the chronic pain, when you’re living with both. However, it does matter which comes first if you are trying to prove disability to a judge. Depression is considered to be more disabilitating than chronic pain.

This is fascinating to me for the simple reason that our society tends to take a dim view of mental illness. Look at medical insurance coverage for mental illness compared to physical illness and you’ll see what I’m talking about. Try telling someone that you have a mental illness, like depression, and watch the reaction. There’s a stigma around mental illness that is unmistakable. It’s OK to take medication for pain if you need it, but anti-depressants? Aren’t they “mood enhancing” or “mood altering” drugs?? Sounds like LSD, doesn’t it?

Why am I ranting about this? Because it’s Lent. It’s time to take some of the stones off my back and lay them by the side of the road, build an Ebeneezer from them and make room to pick up some pebbles that are easier to carry.

I’m playing the piano again Sunday, a piece entitled, you guessed it, Via Dolorosa. My daddy loved this particular piece and I don’t believe he ever heard me play it before, but there’s a first time for everything and I know he’ll be listening.

And I’ll still be walking my path.

Definitions

I am not defined by what I am not.

I read those words late one night last fall. They screamed at me from the page of the book, Velvet Elvis, by Rob Bell.

Rob Bell is the founder of Mars Hill Church in somewhere-or-other Michigan, I think. He has a series of short videos called Nooma, and he’s written some books. Evidently he’s somewhat controversial in the Christian community because of some of his post-modern church rhetoric. If I knew the definition of “post-modern church rhetoric” I’d explain it to you, but I don’t. Here’s what I do know: this book spoke to me, like it knew my name, the specific circumstances occurring in my life at the time I started reading it, put it down, and then picked it back up months later. It wasn’t like the generic way a daily horoscope talks to a person either. I started reading this book last summer and then put it down. For weeks. Then during one of my all-night pain benders the thought came to me, “Go finish reading Velvet Elvis.” I picked the book up and read:

Without pain, we don’t change, do we?

Get it? Pain caused me to go back to the book at the point I’d left it weeks earlier, when I really wasn’t doing the fibromyalgia flare….sounds like a dance, don’t it? I think I like that, in a warped sort of way. Living with fibro is like dancing with the devil. It waltzes into your life one day, grabs you by the arms and spins you like a top, relentlessly. The dance goes for hours, days, weeks and then….disappears, if you’re lucky. And when you’re not looking it crashes into your world again to take you for another spin. At some point you start getting a little bit jumpy (Starman movie quote there) wondering when it’s leaving, if it’s leaving, or when or from what direction it will return.

So anyway, I’m reading along and Elvis hits me between the eyes again.

I am not defined by what I am not.

It’s a new year and time for new definitions. I look at my life, at the people in my life, and wonder about some of them. Specifically I wonder about the ones who like to define me by what I am not, as in “I am not a vocal soloist” or “I am not a housekeeper, good, bad or otherwise.” And I wonder about the ones who will preface their definition of who I am with “Do you want the truth?” when I wander into a conversation and innocently ask a question or make a comment about something that might not even be directly associated with me. I’ve learned to duck when I hear the words “Do you want the truth?” because I know that, no matter what my answer is, I’m going to get it and it’s going to hurt.

I know this sounds confusing. Try living it.

Jesus met the woman at the well in the heat of the day. She was there, alone, because she was a shunned woman, a Samaritan with loose morals. It would have been within his rights as a man in Jewish society to define her by what she was not, acceptable company for himself or any other upstanding Jewish man. He didn’t do that. Somehow he made her see truth without beating her over the head with it. So much so that she was excited to tell her friends to “come and meet a man who told me everything I ever did.”

I’ve done some stuff. We’ve all done stuff. There are only 2 people who know everything I ever did, and I’m one of them. He’s the other one. It sounds totally different when I hear Him say, quietly, “Do you want the truth?” when I’m so used to hearing it so loudly and with such searing accusation, occasionally from someone else, but more often than not from inside my own head.

I am not defined by what I am not.

The truth hurts.

Without pain, we don’t change, do we?

Come and meet a man who told me everything I ever did.

Not everything I ever did wrong, or everything I never did, or everything I could have done better, should have done differently, better not do again.

I look at my life, the good and the bad, the stuff that hurts or is embarrassing to admit, the mountains and the valleys. It’s all true.

And, good or bad, it’s all good.

Losing track

So I’m looking at my little blogs and wondering where on earth I’ve been for the past 2 weeks. Well, let me think.

On December 2 I re-entered the world of playing the piano in “big church”. I suppose it went well, w/ no major foul-ups, because I don’t remember playing it. I remember granny-walking up the steps to get to the piano. Still can’t do steps that well since the knee surgery. I remember granny-walking back down them again. And that’s it. Hubby said it sounded really good, and he’s usually honest w/ me when I mess something up. Plus, I’ve noticed that the times I play something really well–that should read “from the heart” as opposed to “from the head”–I don’t remember the event at all. When I was in high school my knees would shake so badly during recitals; I could hardly do the necessary pedaling. Now I just don’t think about it. I remember every mistake I made in every high school recital. Don’t remember much past that. I know I knocked my college senior recital out of the park, because I don’t remember a darn thing about it. Except for being backstage before and after.

Then Sunday night came, and things went downhill very fast. About 9:00 PM my chest, neck and left arm started hurting and the pain grew progressively worse. About 10 I started having trouble breathing. This has happened before and I’ve always chalked it up to “fibromyalgia flare-up, super-sized”, but it was worse. I called my mom, I called my nurse friend, I called my next-door neighbor. She’s a cardiac patient. My dad had so many cardiac problems that it’s still hard to keep them all straight in my head. Neighbor came over. At some point between midnight and 2:00 AM she called 911 and I went off to the hospital. No cardiac problems, JUST fibromyalgia, extra-strength. I’ve had some really bad flare-ups over the years, but this one was probably the worst. I couldn’t turn my head until about Wednesday afternoon. I already had an appointment Friday w/ a new doctor who specializes in fibro. So, I’ve lost an entire week to the monster. New doctor said that calling 911 was indeed the right thing to do given the situation. Thanks.

Today I’m learning to give my self permission to rest when I’m tired, to say “No” when I need to, like when the kids want all their friends to come over here, to be angry at things that make me angry, instead of pushing them away or inside or whatever. And then to let them go. I have to constantly pry my fingers open, to accept whatever comes, examine it, feel it, and then let it go. Hard medicine when you’re a control freak.

I’m knitting socks. I think I’m addicted to knitting socks. It looks so hard, but is really quite easy once you get the hang of the double-pointed needles. You just keep going around and around, no thought required, which is a good thing during fibro flares because thinking becomes next-to-impossible to do.

As a matter of fact, I’m having trouble concentrating on what I’m writing here now.

I think I’ll go knit.

Learning to walk again

Pain has been a constant companion of mine for at least fifteen years. It’s not excruciating as a rule, but it can be. It is constant though, except for an occasional rare moment when the planets are in perfect alignment or something. I’m pretty sure it’s something I did to myself; the professional opinion is that is was triggered by a minor car accident. Wherever it came from, however it descended upon me, it’s here. The weird thing about it is that, if by some miracle it were to just disappear, I think I’d miss it. Isn’t that bizarre? There’s a saying, something about the devil we know being preferable to the one we don’t.

I’m not sure how it happened. One day I was teaching piano in a studio, glorified babysitting for the most part. The next I was married, working a blue collar job in an AT&T factory, then taking a programming class, and then working as a programmer. All the while, still playing the piano for the small church where my husband and I were married. Then we moved, I took a better paying position, sold my baby grand to buy a house because our first child was on the way. And the music started to fade into the background. The harder I worked, the better I became at my new chosen professional, the more the music faded until, one day, it just left. And the pain started. Actually I think the music just moved into a spare room and decided to wait until I found my way back to it.

Last October I played in a recital for the first time since college. One piece. Rachmaninoff Prelude in C# minor, “The Bells of Moscow”. It’s a chestnut, a war horse, everyone plays it at one time or another, and I’d been scared of it since forever. But the two of us, the music and me, sat down together and started listening to each other. And we came to an understanding.

There were plans to put an entire recital together, from Baroque to Billy Joel, but the pain got in the way. And now, I’m learning to walk again, with my fingers on a keyboard, with my crutches and stiff, swollen knee. I’m going to fall down, more than once, but I have to get back up. I don’t have a choice.

During my freshman year of college I had a music theory professor who broke his leg. He came into class on a Monday morning, in a cast, on crutches, and began to lecture on intervals and ear training, learning to recognize intervals by listening to them and not by playing them on a piano. And he said, as he leaned on the old grand piano in the theory classroom, “Do not use the piano as a crutch.” The room burst into laughter as he realized what he’d said and the context surrounding his comment.

My piano will be my crutch, and I will not be convinced otherwise.