My first few days of work were wonderful and awful. It was so good to see all of my co-workers, and to get so many hugs. They’d actually left my desk intact– I couldn’t believe that it was still there waiting for me.

Half of the department is gone now. This contract was supposed to last a year, but it’s dragged on for almost two. Many people have become impatient about putting their lives on hold, and they’re moving on, finding new jobs and foregoing their severance. The people who remain seem tired and stressed, but still as kind and funny as ever.

I’ve been staying at the home of Kim, a supervisor in the department whom I love. Her house is almost an hour from the office, and it’s just beautiful. I go out on the deck in the mornings and drink coffee, listen to the birds, and watch old dead leaves float from trees, making room for new ones.

My body has not been holding up well through this, but my supervisor told me on my first day back not to worry about anything. She’s given me an unbelievably easy job to do, so there’s no stress involved. She also made it clear that I am to leave whenever I need to, and she doesn’t care if I’m late. “I just want you to get your severance, and to have a proper going away lunch like everyone else.” I heart her.

I have mixed feelings about it all. I’m so thankful for the opportunity, but I’m angry at my body. I’m coddling it, and in a way, so is everyone at work. Stress exacerbates fibromyalgia, but there’s absolutely none involved. I can sit or move around, or do anything I need to do to relieve the pain if it gets bad (including going home). If standing on my head would help the fibromyalgia, they’d provide me with a pillow and the space to do so. But nothing seems to matter. The fibro does what it wants to do, and what it wants to do is wipe me out with exhaustion and send pain shooting through my limbs. I find it all so frustrating. People can see the effects of this written on my face. I don’t want them worrying about me, or having to deal with this at all. It’s embarrassing to feel like a forty-seven year old ninety-two year old.

“I think the worst part of it is the mental aspect,” I told a couple of work friends. “The fact that I can’t control the pain or anticipate when it’s coming or how long it will last drives me crazy.” I try to keep it in the background, but it keeps screaming at me.

There are great lessons in all of this. I’m learning to let go and accept this gift that I’ve been given by the people at work, and to try to do it gracefully. I’m beginning to understand that I will never understand this syndrome, and that, try as I might, I’ll never be able to fully predict what it’s going to do. I’m trying mightily  not to hate my body for what it’s doing, but to instead listen to what’s it’s telling me, and to try to obey its orders as much as I can. I’m trying to learn to not be humiliated or feel “less than” because of all of this, but that’s been a little more difficult. Right now, I’m missing the part of me that was energetic and fun. I hope it comes back soon.

Quite honestly, I’m a bit terrified. I will never have an easier job, or one where I am accommodated to this degree. This wasn’t even a full work week, and I’m not holding up well. I’ll try again next week and the week after that, and hopefully, my body will respond better. But this experience has made me decide that I need to think much more seriously about the future, and how I’m going to survive financially with this uncooperative body of mine.

Stress Makes Me a Mess

March 15, 2008

My body hasn’t hurt this much in many moons. If I ever had doubts about whether stress exacerbates the symptoms of fibro, I’m now completely convinced.

The other day, I was invited to test for this little online job. I passed the test (which was a stressful, timed thing), and I got accepted. The “job” entails having to find, research and type answers to questions at a frantic pace. You get paid per answer. I did it for hours yesterday, just to get into the groove of it (and I made a whopping $8). Kind of hard to explain all of this, but here’s the thing. This job is a little microcosm of what a typical work day out in the world is like for me. I really enjoyed doing it. I love the face pace, the stress, the excitement of learning new things, but by the time I went to bed, my body was shrieking in pain. I woke up in the middle of the night with more areas of my body hurting than I can remember– the soles of my feet, my heels, hips, legs, shoulders– there was almost no area that wasn’t in excruciating pain. I could barely walk. Today’s not a whole lot better.

I dislike it when I whine and complain, but here’s my point. For me, the correlation between stress and fibro is undeniable. I stayed awake thinking about what a huge lesson I’d received about how all of this works. Stress is a demon for those of us with fibro– at least it is for me. It seems that since stress is what intensifies the pain, relaxation and meditation should ease it. But the catch with this is that, although I sometimes have a bit of control over how bad the pain gets (by staying out of stressful situations when possible), I have absolutely no control over relieving it once a flare hits. I can’t seem to undo the damage.

Lesson learned. Ouch.

I hurt. Everywhere. It’s not funny anymore. This flare has lasted waaaaaay too long. I was lamenting to another blogger (Little Miss, who has an excellent fibro blog) that even the weight of my blankets have been causing pain when I sleep at night. Forget the fact that I can hardly sleep in the first place, what with my brain waves jiggling at about 200 miles per hour all night long, this new development strikes me as sleep disturbance overkill.

BUT….I was going through some moving boxes today (yes, I’ve lived with Tom since July, and have yet to completely unpack), and I found my old friend, my memory foam pillow. I used to get excited by attending a rock concert, going out to dinner or  traveling to new and exotic places (like Indiana). Now, the thing that brings me more joy than the prospect of having Antonio Banderas standing nude on my doorstep is a damned pillow. I bought it on Overstock.com a few years ago, and it is the most comfortable, wonderful, smooshable item I’ve ever owned. Tom is all of those things too, but technically, I don’t own him.

I can’t wait to pretend to sleep tonight!

A Good Read

March 11, 2008

…about one woman’s experience with fibro. Recommended reading!

The Nature of the Beast

March 5, 2008

I have fibromyalgia. I keep this separate blog about it, because I like the idea of keeping it apart from my “real life.” To define myself by this syndrome is like a donut maker whose describes his life by telling you about those little rings of dough he fries up every morning, or a street sweeper who, if you ask him about himself, tells you about his broom and his dustpan. It’s not who they are, and fibro is not who I am. It’s just a part of me.

Increasingly though, it’s taking a bigger place in the spotlight. It pours through the layers of my life, and makes them hard to separate. Fibro can be a demanding diva. It’s insistent, this syndrome, and at times it screams for my attention. It seems that it takes up more and more of my time and energy, and it refuses to leave.

I’ve spent a lot of time crying about all of this for the past couple of days. I feel flu-y, foggy, and almost every part of me is in iron-hot pain (my right elbow and my tongue are feeling okay). Having this “thing” runs so counter to who I feel I “really” am, and I’m often frustrated by the betrayal. It really mucks up the way I run my life.

Imagine having something that no one can see, and no one can understand. Believe me, it’s impossible to understand it. Doctors, family members, friends, insurance companies, employers– they just don’t get it. How can they? Those of us who have it don’t understand it ourselves. And often, those of us who have it don’t want to acknowledge it to anyone because we have a hard time handling the looks, the attitudes, and the unspoken judgments that we see on the faces of others.

My body’s in a great deal of pain most of the time, but usually I’m still moving, still trying to keep my spirits up, still hoping that my will to be strong and functional will win out. I try to push fibro into the background and pretend it doesn’t exist. There’s always a part of my brain that’s telling it to shut up and leave me alone. I refuse to lose myself in it, but it’s hard to not want to give up sometimes.

I’m lucky to have a loving partner who’s so incredibly kind to me in the midst of all of this. Many people leave their significant others under the stress of this syndrome. Tom knows I don’t like to discuss it, don’t like to bother others with it, but he makes me talk about it sometimes. He holds me while I cry. He rubs my body and tries to make me feel better, and usually he does. He may not understand fibro, but he understands me and what I’m fighting for here.

I often struggle to recapture the “old me,” the one I liked, who could do what needed to be done when it needed doing. The self-sufficient one who didn’t have to think about whether she’d make it through a day at work or maintain the physical capacity to get simple tasks done, the one who earned a decent income and was at least somewhat of a contributor to the world. The bubbly gal who loved to be around people and experience new things. At my current best, I still feel like I have it so much better than so many others, and that this cancels out my right to gripe. At my worst, I feel completely irrelevant as a person– like I’m just taking up space on the planet.

Not too long ago, I had a fantastic job. It was a contract position, and if I could have made it through until April, I would have received a really nice severance package. I had an incredible supervisor and many wonderful coworkers. The travel distance was long, the stress was enormous, and it absolutely wrecked my body. I was faced with the prospect of trying to somehow tack together everything that was falling apart. This is my normal way of doing things– if something goes wrong, go into Sherlock Holmes mode. Identify the problem, look for answers, and solve the damned thing. But there are no answers here, and no solutions to the puzzle. Life begins to fall apart faster than you can repair it. It all becomes like that Woody Allen quote: “If you want to make God laugh, tell Him your plans.”

I’ve traveled long distances to see specialists, to discover a fix and regain some hope, but with fibromyalgia, you soon discover that there is no fix. I’ve read, I’ve consulted, I’ve experimented. One doctor sends you to another who sends you to another. The search for non-existent answers leaves me more stressed and in more pain. The usual “miracle cure” is a page from a prescription pad, and I refuse to become some zombie held together by pills. There’s a woman in here, a woman with a brain, a nice personality, and what once was a pretty deep passion for life. I’m not giving up on her yet. This is absolutely not to say that taking meds isn’t what some people need to do to ease some of this. It’s just that I’d rather have the pain than the side-effects.

Here’s the way it works, out in the real world: You can’t just say, “This is what’s happening to my body, my spirit and my mind.” You have to prove it, which, from an employer’s standpoint, or the standpoint of Social Security or an insurance company, is understandable. But it takes massive amounts of energy to prove that you have no energy, and for someone with fibro, you pay in pain. Soon, your money and your steam run out, and with it, your access to resources, and eventually, your dignity. Personally, I’ve made the decision to give up trying to prove anything. I just wonder how I’m going to push my little cart when I become a bag lady.

I resent the hell out it when someone says that this is hypochondria or a physical manifestation of something going on inside the patient’s head. Much of the medical community is as guilty of this as anyone. Some doctors have a godlike, egotistical way of thinking, and often seem to believe that if they can’t figure something out, it must exist solely in the mind. I’ve bitten my tongue through so many condescending conversations with them that I’m surprised I don’t spit blood. Doctors are just human beings in lab coats, and I’m tired of dealing with those who somehow believe that due to the fact that they’ve gone to med school, they’re on a higher level of the food chain than I am. Respect, dudes. We Fibromyalgians need some respect.

Right now, I feel sapped of energy, resilience, optimism and patience. To me, it’s all quite humiliating. I often hide myself from friends and family, and I don’t go out much anymore. The joy I find is here at home with Tom and our cat, and from the writing that I do. Writing connects me with others in a beautiful way that often takes my focus away from this syndrome. I can talk about subjects that have nothing to do with chronic pain, and no one looks at me funny if I can’t walk down my stairs, if I have a migraine or chest pains or if I have to take three naps during the day. On my best days, the joy that’s deep within me reemerges and spills out onto the page. It lets me reconnect with that woman I once was.

I miss her.

The Gift of Fibromyalgia

November 15, 2007

Without Fibromyalgia:

  • I never would have quit my job.
  • I never would have slowed down.
  • I never would listened to what my body was telling me.
  • I never would have learned to nurture myself.
  • I never would have started my blogs a few months ago.

Fibromyalgia forces change. It screams for attention. It refuses to compromise. It sends a message that says, “What you’re doing isn’t working. Do something different. Do something else–now.”

A few months ago, I was on leave from a job so stressful that my body refused to be a party to it any more. Walking down a flight of stairs became a major challenge. The fogginess was making it impossible to perform the simplest tasks. I was running (well, crawling) to doctors, trying to find a cure that doesn’t exist. In the meantime, I was jumping through hoops trying to make all of this easier on everyone– my employers, co-workers, the insurance companies, my boyfriend, friends, and family. It depressed me and wore me down.

“Find what you love to do,” urged my boyfriend, Tom. “Let yourself flourish. Then the Fibromyalgia will disappear.”

At first, I didn’t even understand what he was talking about, but it slowly began to sink in. Finally, I slammed on the brakes. No more, I decided. I have to learn to do this my body’s way. My spirit’s way. What I believed was most important– a decent wage at any cost, benefits, endlessly trying to please as many people as possible in any given situation–was wrong.

So now, after nearly eight years of spiraling with this syndrome, I’m doing what I love. I live in a little house with a kind man and a passive-aggressive cat. I listen to music, I paint, and I write. I look at the sky, notice the changing leaves on the trees and I feel grateful. I do chores when my body gives me the green light, and I try to stop when the light turns yellow.

A few months ago, I started two blogs– one for my “real” life, and one where I could rant and wail and cry about Fibromyalgia (this one). Immediately, blogging just felt right. At first, my goal was just some self-therapy, and to discipline myself to write every day. Never did I foresee what a gift it would turn out to be.

Through this process, I’ve met so many wonderful bloggers, and blog readers. They’ve given me much food for thought. We exchange advice, ideas, and encouragement. We laugh and cry together, and provide hope and strength. It was through blogging that I met Brian, Little Miss, Beth Z, Tammy, RM, and Wendy, among many others– writers, editors, and friends who encouraged me to start submitting some of my essays. This led me to try my hand at writing for a living. It feels very right, like I’m finally doing something that’s harmonious with who I am.

This week, one of my articles is on the front page of our city’s arts and culture magazine. Tom’s so proud that he nabbed several copies and brought them home. I don’t feel proud, I feel thankful. I’m finally learning to earn my living doing something that I love. In a roundabout way, thanks to Fibromyalgia, I think I may be flourishing.

I am so sick. This is crazy. It feels like I’ve been bitten by a Tsetse fly or something. I’m sleeping all the time, my brain’s not working, and I’m so weak that I feel like an inflatable raft that’s had all of the air sucked out of it– I’m just a limp, useless thing right now, a noodle on a sofa. Frustrating.

I’d made a decision not to take the Lyrica anymore, because I no longer have insurance, and I just can’t afford it. But I was so achy earlier that I took one, and it’s helping a bit. Tom put a Lidoderm patch between my shoulders, and it’s masking some of the pain, which is great. I’ll take fake relief right now, thank you very much.

It just occurred to me that my Fibromyalgia flares up the worst in November. In the past, I’ve been in the hospital and on leave of absences twice, at exactly this time of year. I’m rolling with it this time, but I dread thinking that this is the same thing, or that it’s going to effect me in the same way this year.

This is like the flu times ten, without the fever. I just had to whine a little.