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.

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A Big Black Hole

February 28, 2008

Ay yi yi. I have fallen into a deep, dark depression. Due to financial constraints, I’ve had to quit taking my medicines. I never was a big pill taker, so the only two that I was on were Lisinopril (for high blood pressure caused by fibro) and Lexapro (also for the fibro). I took 10 mg. of each, the lowest available dosages. Lexapro is an anti-depressant, and although the doctor put me on it to break the stress/ pain/ depression cycle, the only reason I agreed to do it was that while it helped the alleviate the pain, I always felt like me. I hate taking anti-depressants, but with such a small dosage I was still able to laugh, cry, and just “feel” in general, and my body aches diminished a lot.

I took my last one about two weeks ago. The physical withdrawals weren’t fun. My mind was spacey, I cried a lot, and my whole body felt like it was vibrating 24/7. I could deal with it though, because I knew that it was just temporary. But here I am, fourteen days later, and the depression is horrendous. I’m almost totally non-functional, and that in itself is driving me mad.

I’m trying to help Tom with his business venture, but it’s just been horrible. I’m getting stuff done, but it’s so hard to focus. I freak out, I cry, I get angry, I sleep to escape. I feel like the most horrible person on the planet. None of this is like me at all. I do hope this all ends soon. Just needed to vent. I hate all of this. I truly do.

No real reason for the accompanying photo. I just think it looks as weird as I feel.

Anger, Unlimited

February 4, 2008

All right, I’m just going to completely backslide on my peaceful serene fibromyalgia mindset and say that I am pissed. I am angry. I am furious. Today, I’m tired of thinking about all of those people who have it so much worse than I do. For right now, I’m tired of being grateful for the good days that I have.  At the present time, I just want to be mad. I seldom get mad. But as I lie here on my sofa, foggy and hurting from head to toe, exhausted for no good reason, and worried to death about how I’m going to make a living with all of this going on, I want to scream.

I’ve been dealing with this for eight years, and truly, I think that overall, I’ve done a bang up job. But today, I’ve just had it. I’m fed up. I’m tired of not wanting to bother anyone, of smiling through the pain, of fighting the good fight. I’ll feel differently tomorrow, but today, I want to scream.

I want to scream at all of the quack doctors and clueless hospital personnel that I’ve seen over the years. Folks, if you don’t believe that fibro exists, do us all a favor and refuse to see us. Be ethical and refuse to take our money.

I want to scream at the insurance companies that have made me jump through endless hoops proving my case, sending me running to more clinics and specialists than I’d ever dreamed of, trying medications that I’d never consider taking, all to prove the unprovable, and which contributes to the stress and exhaustion that exacerbates this syndrome in the first place. I’m tired of making 400 phone calls, gathering every piece of information that they request, only to be told that I don’t qualify for short term disability because I haven’t provided enough information. What a scam.

I’m going to call Social Security tomorrow to find out about applying for disability, because it’s obvious that I’m unemployable at the point, and I’m screaming in advance because of what I know they’ll put me through.

I don’t WANT to go to any more doctors. They can do nothing for me but push, prod and determine for the gazillionth time that I have fibromyalgia. I don’t WANT to take any more medications, because they don’t help, or the side effects outweigh the benefits. I don’t WANT to spend any more money that I don’t have to prove something that’s been proven as much as it can be proven.

Don’t tell me that this is in my head. I’m not a stupid woman. I’m not a whiny woman. There is absolutely NOTHING positive to be gained by having fibromyalgia. It brings no benefits. It brings no joy. It brings no positive attention or empathy, because I don’t talk about it. And honestly, I don’t want or need those things anyway.

I just want and need to feel better.

Lyrica…the Hunger Drug

February 3, 2008

I’ve been trying to juggle three blogs lately, and I’m doing a really crummy job of it. This one has been the one I’ve neglected most, not because I’m not having any fibro symptoms, but because I’m just too ADD to handle all of it.

BUT…I want to give a little update on this Lyrica stuff. I’d decided to take it only when my pain had reached such a threshold that I couldn’t handle it. It’s my way of calling out the big guns when the last straw has broken.

So I did this last night. I was in incredible pain–the kind where I want to crawl out of my skin. I popped a Lyrica, and within an hour, I was feeling a lot better. BUT….

I was suddenly starving. I mean, seriously, crazily starving. I raided the fridge for everything I could get my hands on. I had eaten dinner earlier, and had not been hungry afterwards, so there was no reason for this. But there I was, ravenously pulling out pickles, cake, olives, oranges. I had a bowl of egg and olive spread, which I was saving to spread on toast, but instead, I grabbed a spoon, and ate the whole bowl.

This whole time, I was saying to myself– “What is going on? Is this because of my period? Is it hormonal? Maybe I should try to exercise some willpower here.” Then it hit me– Lyrica. And let me tell you, there was not one ounce of willpower in my entire body.

Today is better. I’m hurting, but I’m back to my old eating patterns. But I’m sure I gained five pounds last night, and I’d almost rather be in pain than have to deal with that.

Am I spinning my wheels, trying to find patterns in my fibro? Am I wasting my time trying to figure it all out? This roller coaster ride really, really gets to me sometime. Today is one of those sometimes.

Actually, it started at about 6:00 this morning. I woke Tom (and myself) out of a sound sleep by screaming out in pain. I don’t think I’ve ever done this before. I was sleeping so deeply that I can’t remember what it was all about, but I remember feeling this searing pain in my knees, and just shrieking in agony. This was real pain, not a dream. It was kind of like being under anesthesia, that “twilight sleep” where you can remember what’s going on, but you’re sort of out of it too. I went back to sleep, and when I woke up, I felt fine.

At some point today, I noticed that I was having no pain. None whatsoever, and I realized that I’d been feeling that way all day. I was so happy. That’s the one thing about fibro. You start feeling extremely grateful for every good moment.

Of course, my brain started this confused inner-dialogue. I want to work. I need income. And when I start feeling good, I think, “How in the hell am I supposed to do this?” Is there a temp agency that will work around my pain schedule? My exhaustion schedule? I gave up trying to figure it out, and just went back to doing some writing.

A couple of hours later, I went downstairs to give my eyes and my brain a break. I laid on the couch, talking to Tom, and as we were talking, pain once again began descending on my body. Within minutes it felt as though it was searing through to my bones. It moved around, and the only way I could describe it to Tom was that it felt like a flaming pinball, bouncing around inside me.

Let me explain that I have to really, really be hurting badly to even mention it to anyone else. This was so strong that it was making me cry. And it was hurting in the same old places, but different ones too. My hips, my butt, the tops of my knees, and in the joints at the top of my legs, all the way around. I just lay there for a while noticing it and crying a little.

The other thing is that I have to be in excruciating pain to ask Tom for a massage. I’m determined not to make my problem his any more than I have to. But this was bad, and I asked. Usually, I want a deep massage. It hurts like hell, but in the end, I usually feel some relief. But this time, he just gently started rubbing my body. No pressure at all, just rubbing my skin. He rubbed my legs, my bootie, my stomach– there was no real rhyme or reason to it, it was just gentle touch. Immediately, I felt the pain begin to drain away from my body. It was as effective (if not more so) than a deep tissue massage. At some point, he applied some gentle pressure to one of my legs, and it made me cry out in pain, and my leg sort of spasmed. But the gentle touch actually worked.

So I’m feeling better. Drained, but better. I don’t think I’ll ever understand the way that this works, but each time something new and good happens, I feel a little bit of hope. And hope is what keeps me going.

Dearest Diary,

Waaaaaaaaaaahhhhhhhhhhhhhhhh!!! Ohhhhhhhhhhhhhhhhhhhh!!!! I hurt I hurt I hurt I hurt! Everything is hurting! Ouch! Okay, my tongue doesn’t hurt, but everything else is hurting! Shit! It aches! It burns! I hate this! Ow, ow, ow! !@#$%. Arrrrghhh– get me out of this body!!!!

Whew! Okay. Better now. Thank God I can confide in you, my dear, dear diary. I’m going to bed now.

Love,

Moonbeam

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.

Human Doppler Radar

November 3, 2007

My body’s been aching like crazy, partly because of the tumble down the stairs last weekend, but mostly at this point, because of the weather. As winter approaches, I’m dreading what experience has told me is yet to come. My legs, hips, knees and back are burning, and there’s an intense, bone-deep achiness that’s hard to explain. The only adjectives that come to mind to describe it are “gross” and “disgusting.” I know that sounds weird, but it truly does feel so awful that it makes me want to crawl out of my skin.

Sounds crazy, huh? But this is what Fibromyalgia is like for me. I wake up in the middle of the night in immense pain, then I get a little freaked out because I know that lack of sleep makes it all worse. I’ve said it before, but it does sometimes feel like a cruel joke– a game that can’t be won, because the rules are so impossible to follow. “Don’t get stressed,” “Get plenty of rest.” “Exercise.” “Take it easy on yourself.” So I try to do all of this while I hurt and burn and become a dejected insomniac. I know that it will all get worse as the temperature drops. I can take all of the advice in the world about this syndrome, but until I’ve mastered the art of controlling the weather, I’m sort of up a creek. Or a glacier.

The pain got really bad yesterday. “The temperature must be dropping,” I told Tom, like an old lady with rheumatism and a trick knee. I went to let the cat in, and was hit by a blast of cold air, which confirmed my suspicions. I can tell when it’s going to rain now, and when it’s going to snow. I’ve come to dread seeing a gray sky more than I ever did, because now, it all means something different than simply, “Bundle up,” or “Carry an Umbrella.”

Today, it’s warmer. The sky is blue and beautiful, and I’m hopeful again. I’m going to try to catch up on my sleep a little, and attempt to regain some of my energy. And so it goes.

Ahhhhh….Saturday morning. The day we get to loll in bed, snuggling and drinking coffee and catching each other up on the week’s news. We jabber endlessly about everything under the sun, make plans for the future, and map out the weekend. My favorite day.

During the week, Tom wakes up and gets us coffee. He brings a carafe of it up to me in bed before he gets ready for work. This morning, I woke up first. My plan was to sneak downstairs, brush my teeth, get the carafe and bring it upstairs to my sleeping sweetie, who I’d awaken with a kiss.

It didn’t exactly go according to plan. With a the finesse of a delicate ballerina, I started at the top step, and WHAM! My feet went out from under me like they were covered in banana peels. In fast-motion, I slid down six or seven steps, making a nice loud BOOM, BOOM, BOOM sound as my head hit each one. Nice. Smooth. Tom leapt out of bed and ran down to help me. All I could think about was that I hadn’t brushed my teeth yet, so I wouldn’t talk to him to tell him that I was okay. Besides, I’m still not sure if I am okay.

Even the tiniest misstep can have devastating effects on me. Last week, I misjudged the height of the step on my mother’s back porch and sort of jarred my body. It made me cry, because I knew that a little mistake like that could cost me for a long time, because of the Fibromyalgia. And it did. Of course, I then I get into the whole cycle of trying not to see it that way, trying to change my thinking so as not to make what I’m anticipating (from past history) come to pass. But it always does. And it’s happening again today, in spades.

I have to go lie back down now.