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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9 Responses to “The Nature of the Beast”

  1. Abbe Says:

    hey MB:

    I feel your pain, I understand and I sympathize. My own diagnosis with Rheumatoid Arthritis makes me feel pretty much the same. Add to that psoriasis to give it a nice physical presence. I also hide myself away much more than I used to…it’s just easier than having to explain why today this hurts, and yesterday that hurt, and why tomorrow something else. I mostly cry when I am alone because to me, my tears represent something else that I will need to explain. I’m not sure which comes first, the depression or the flair ups, but I know there is a connection. Long flair ups (more than a couple days)make me question how I can keep doing “this”. I am tired, no, exhausted a lot. Yet, I am a place in my career where I am being asked to do more and more…making a name for myself, building my CV. Taking on more seems like cruel and unusual punishment but I do it anyway. Maybe with more to do, I’ll have less time to think about the RA…it just gets so hard to get out of bed somedays.

    I wish you a week of pain free living and then another.

    If it helps, you’re writing is fabulous and I am thrilled that I found your blog. I love your sense of humor and I look forward to your next entry immediately after reading your latest. If you ever just need to kvetch, feel free to send me an email.

    Hang in there…
    Abbe

    @ Abbe: I read this the other day, and it made me feel so much better. You really do know what this is like (and I’m sorry you do). The psoriasis is sort of the icing on the cake, I imagine. You’re an incredibly strong person not to give up, to keep concentrating on and working toward the future. It is depressing. There’s just no way around it, and I think my biggest struggle is that creativity makes me happy and lessens the depression, but it’s hard to be creative when you’re foggy, hurting and feeling like dooky.

    (((Big hugs))) to you, Abbe. You have no idea how much better (and encouraged) this made me feel. The e-mail kvetching offer extends both ways, okay?

  2. Lucky Says:

    As you have said before, some posts are so profound you don’t know what to say so you don’t say anything. (I can’t NOT say anything. I have a HUGE mouth.) Except this time, I don’t know what to say. I don’t know how you feel and it makes me incredibly sad to hear you going through this. The other day, I told Joan I feel like a better person since I have found your blog, hers and Wendy’s. You always have such great things to say and I love your writing. It’s fantastic.

    Last night, I wished you were a 3D friend – I would have bought you the shamrock plant I saw at Wal-Mart. The instant I saw it I thought, “Moonbeam would love this!” 😉 I’m keeping you in my thoughts Lady!

    I’m sorry this makes you sad, Lucky- it’s one of the reasons I keep this stuff separate from my “happy” blog. I happen to like that huge mouth of yours. It makes me laugh a lot, which I find very healing. So see? Your blog makes me a better person too.

    That’s so sweet, about the shamrock. You made me a little teary with that one. I hope that one day, we can all have just one huge, centrally located Blogapalooza, where we can actually meet the people who make such wonderful impacts on our lives. Wouldn’t that be a blast? (((Hugs))) to you. Your comment made me feel much better too. You guys have no idea how much this kindness helps during a really bad flare up.


  3. “imagine having something that no one can see, and no one can understand”……

    I understand. I have fibro, too. And what’s worse than people not understanding is not believing that it’s a real condition.

    I relate to ya, girl. I really do!

    It sucks, huh? I know you can relate, which makes me feel better for me, and sad for you. Thank goodness we have better subjects that we relate on, in addition to this!

  4. Laurel Says:

    I found your blog for the first time yesterday. I had to come back and leave a comment. I too, live with this frustrating condition.

    First of all you are a great writer. I love how you explain how it affects you. You could be speaking for me in this entry. I have such a hard time finding the words to describe what its like. Thank you for starting your blog. I was telling my husband about it and he will check it out too. I think the hardest thing I find is that I really want people to understand it. I don’t want sympathy or pity. I isolate myself at times also. I find its easier not to have to explain it. I really hate it when I need to cancel a commitment I’ve made to do something. I feel like I often let people down. Sometimes it ‘s easier just to not plan too much. It’s all a struggle. Hopefully we can encourage each other and find comfort in knowing we aren’t alone.
    I hope today is a better day for you. My motto is “One day at a Time” and “This too Shall Pass”
    If you ever need to talk to anyone, feel free to email me. Again, thank you.

    Laurel

    Laurel, I’m so glad you found your way here. I try to keep it positive, but sometimes there just isn’t a lot to be positive about. I understand that feeling of letting people down, including myself. Ugh.

    One thing that really helped me in dealing with this is giving up on wanting others to understand it. It took years to get to that point, and I still sometimes try, but overall, it helps me not to attempt to seek understanding because invariably it leads to disappointment, which leads to more sadness and stress, which just makes me feel worse!

    You know, one thing that I think sucks is that Fibromyalgia forces you to put so much focus on yourself. I absolutely hate that feeling of having to think of myself so much– my pain, my exhaustion, my depression. Me, me, me. Very icky stuff.

    Anyway, again, your comments are wonderful, Laurel, and I’m glad you came by. Hang in there. Oh, and I like those mottos!

  5. Little Miss Says:

    Oh MB. You made me cry just a little. It’s like you were inside my head and wrote exactly how I’ve been feeling. I’ve been trying to pretend this crap doesn’t exist for me and doing what I used to do so easily just a couple years ago. Today I woke up stiff as a board, and the last couple days I’ve been in searing pain but haven’t said anything about it to family. Even family, although they love you, just don’t know what to do or how to help. Except Tom. I wish I had a Tom. That’s why I’m doing Weight Watchers. Maybe I’ll blog about that.

    Your pain free right arm? It’s over here on my body. I have sucked up all the pain in the universe and it goes right through my elbow to the point that I have to stop typing, almost cry, and rub my arm till it feels better.

    I’m thinking there’s a way to change the employment paradigm. I haven’t figured it out yet, but I’ll send you a private message when I do.

    Wahhhhhh! You made me cry! Stop that! I want you to feel better right now. I think you’re on the right track as far as the employment situation goes. I’m still struggling to figure it all out, but I never stop trying. Dammit, if Stephen Hawking can do the things he does in his condition, surely we can figure out a way to make an income! I truly do think that you’re on your way. I’ve said it before and I’ll say it again: you’re an inspiration to me.

  6. Mary Says:

    I just found your blog and really have enjoyed reading it. I was diagnosed with fibro a couple of weeks ago, but have had it for years. I have an everyday challenge with “fibrofog” that is so hard to deal with. Back in 2006 I actually backed into my daughter’s car in the driveway. I walked out of the house to leave and looked right at the car behind my own. I got in my car, forgot about the other one and backed right into it! Then just a month later did it again! I thought I was loosing my mind and so did my family. Not too long ago I did the same thing to a friends car. I have always been a very careful driver and have a perfect driving record, with the exception of these 3 times! Everyone knows now not to park behind me. How embarrassing. I can’t remember anything short term. I have recently filed for Social Security Disability and know that I have a long uphill battle to prove the disabling factors of Fibro. I also have a bulging disc in my neck, so I am hoping the combination of medical problems will make it somewhat easier. My marriage ended in 2006 so I have to rely on myself to take care of everything. It is scary. My ex took care of so much around the house and I didn’t realize at the time how much I relied on him. You are fortunate to have a supportive husband. I will continue to read your blog. It helps to relate to someone that has the same challenges that I have. I laugh, but usually end up crying when I have to admit to myself that this is something that is not going away. Getting the diagnosis and being able to put a name on this was a relief at first, but realizing that this is something I can’t control leaves me feeling helpless sometimes. Thanks for the great writing!

    Mary

    Mary, hi! I’m sorry about your fibro, and I can completely relate to the fog. It frustrates me to no end, and is one of the things that worries me most. Okay, so my body doesn’t work so well anymore, but leave my brain, okay???

    Before I could connect all of these symptoms, I was in school and just having a terrible time focusing at times. It was recommended that I get tested for ADD. The woman at the place I went for testing was really rude, and in her questioning, she asked, “Why do you think you have ADD? What’s making you think that there’s something wrong?” I answered, “I wreck cars.” Fibrofog sucks.

    I truly do empathize with all you’ve gone through. The marriage, the fog, the sadness and the pain. I hope you get SS, and that you get it soon. Thanks for contributing to the comments here!

  7. thegirlfromtheghetto Says:

    Amen, sister!!!

    And I amen your amen!

  8. Lucky Says:

    Don’t be sorry! This is your blog Lady!!

    I WOULD LOVE A BLOGAPALOOZA! How awesome would that be! 🙂

    I’m reeeeeaaaalllly thinking a Blogapalooza would be a blast. It’s tumbling around in my head. Ouch!

  9. tammyrenee Says:

    I’m off to visit a psychiatrist tomorrow who I’m pretty certain is going to tell me all my symptoms, especially fibro, are psychosomatic. I think part of me wants the opportunity to really tell this lady what it is like… not to change her thinking, but to feel like I’m fighting back even if in some small gesture. I’ve tried explaining to doctors that even when I’m the happiest, I can feel my worst, but it is always met with their belief that I’m SOOO sick that I’m willing to lie rather than accept I’m truly disturbed, ha, ha. Well… you know how frustrated I am with the medical community and society in general so I’ll spare the repeat venting. I know it gets tough when your condition is at its worst and I’m happy to listen to your vent. Hopefully soon I’ll be coming back here to share you tales of improvement, too.

    I would really, really love to hear your tales of improvement. I know that you’ve been going through so much with this, and I hope that the psychiatrist you see tomorrow has some experience in dealing with patients who have chronic pain. And really Tammy, with what they make, I don’t think you should hold back at all. What’s the worse that happens? She’ll think you’re crazy? 😛 Please keep me posted.

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