Fibromyalgia and What I Learned

When I was first diagnosed with fibromyalgia, I tried to tell myself that many other people were much worse off than me. This is undoubtedly true. As bad as my worst flare-ups would get, I knew that eventually I'd feel at least a little better. I learned that fibromyalgia is not degenerative. It can be debilitating but it wasn't going to kill me. So, I told myself to suck it up and get on with life.

That worked for me ... uh, not at all. I never fully admitted that my life had to change. I threw myself into the vicious cycle of doing too much, having a flare-up, crashing, recovering, doing too much, and so on and so on.

I was depressed, in pain and exhausted all the time. I finally broke. I took advantage of my company's employee assistance program and made an appointment with a therapist. She told me something that changed my perspective. She said that it didn't matter that other people were worse off than me. She said that there would always be someone whose situation was worse. That didn't mean that I had to discount what was happening to me. It didn't mean that I couldn't feel bad about what was happening to me.

I got permission to feel sad and angry and afraid about the changes in my life. Sometimes I still feel sad and angry and afraid. But you know what? I don't feel guilty about it. I learned that masking my feelings about my illness is not productive. I learned that I have a right to mourn the life I lost. When those lessons sunk in, I started to see that I could make a new life for myself. I could see myself living a good life even though I have a chronic illness.

Happy Anniversary to Me

The other day I realized that I missed an important anniversary. It's been nine years since I was diagnosed with fibromyalgia. I can't remember the exact date of the diagnosis because between perimenopause and fibro, I'm lucky I can remember my own name, but I do know it was in the fall of 1999. In honor of the past nine years, I thought I'd spend the next couple of entries talking about:

1. things I've learned since being diagnosed
2. things I haven't learned
3. things I think I've learned but apparently have not based on my actions
4. things I hope I learn and act on going forward

If I have any anniversary wishes for myself, I'd wish that I would acknowledge that I've done my best dealing with this illness for the past nine years and, more importantly, that I live my upcoming years with joy, love and wisdom no matter what health challenges I might face.

I Figure It Out

I finally figured out what's wrong with my life.

Today, I got two emails. One said that said that if I forwarded the message, I would get good luck. The other said that if I didn't forward the message, my life would be awful for days to come.

After I deleted the messages, I realized that I never forward any messages like that. I haven't forwarded any of them for years. No wonder I never have any luck! No wonder I have awful days!

I apologize to my friends and family (and anyone dumb enough to give me his or her email address). I am going to fill your inbox until good luck comes my way and I have no bad days.

Hope and Cynicism in Politics and Fibro (and Sports for Good Measure)

Relax. I think I'm almost done with my mild foray into the world of political blogging. And the rants about work? No more of those. At least for a while. 'Cause the potential for a work rant? Right there under the surface. Always.

I said in my last post that I was done with hope and gloating. I haven't gloated for two whole days. Really. But that darn hope. It keeps creeping up on me.

Hope is a pernicious thing. It slinks in and makes me think about how things could be. Hope isn't about hard work, choice and compromise. Hope is about seeing my world, your world, our world as a better place where the impractical, the improbable can be. Hope is that tiny, burning flame in the heart. Hope is a country where any child can grow up to be President. Hope stirs in late August when the Detroit Lions fan imagines a winning season. Hope is me doing work that has an impact, that is interesting, thought-provoking, fun.

When hope crashes, cynicism storms in.

I finished my first full, 40-plus hour work week in over four years on Friday. I had flashbacks to my life four years ago - go to work, go home, go to bed at 8 p.m., do it again the next day. I was afraid that I knew what would happen and it did. On Saturday night I was insanely tired - drunk, drugged-up, stumbling into furniture tired without a drink or drugs to explain it away, to make it normal, to give it a rational explanation. Cynicism roared, happy to be proven right once again. I can't do this. What was I thinking? I almost wanted to cry. It would have taken too much energy.

Wait though. There is another player on this team inside me. Pragmatism.

It is still early days in my treatment. It's too soon to judge it a success or a failure. It's too soon to imagine that I can work full time without feeling the physical effects. Pragmatism reminds me that I don't want to spend my work life filing or putting together open enrollment packages. This adjustment to my current gig is temporary. It's a way to make some additional money. It's not my life. Or the end of my life.

Governing the country will be harder than winning an election. The Lions may not win this season. Fibromyalgia and chronic fatigue may never have a cure.

I may not know how to balance the demands of illness, work and a fulfilled life but I still have hope that I can learn. I'll keep that tiny flame burning. I'll listen to cynicism and its fear of all that could go wrong. I'll let pragmatism balance the two and run the show for a while.

Hope and Gloating

My days of hope and gloating are over. Now it's back to my cynical reality and living the dream. Great.

Why am I doing this? That's right. Money.

It's only been three days of working a full time schedule and already I've had to be assertive. Some of my co-workers may be muttering the B word under their breath but only because they do not understand that my way of doing things is the best and, really, only way. If they would just agree with me, no one would get hurt. There's a long and involved story about using FedEx Office. I won't bore you with the details. I'll just say we used FedEx Office. (There was no way I was going to stand by the copy machine for a full day watching documents print and clearing printer paper jams. No way.)

I did hear amazing and disgusting and hilarious stories of personal grooming at work so today wasn't a total loss.

Tomorrow I tackle the file room. I don't usually file. I complain because the room is a mess but I don't pay attention to what's happening with the files. On Monday, I pulled the personnel files for some terminated employees from the active employee file cabinet. I opened the drawer marked 2008 Terminations to put the files in the terminated employee file cabinet. There were no files in the drawer. At first, I thought I was doing something wrong. But no. No one has pulled the termed employee files since January. This totally boggles my mind. No doubt filing is boring, but it's one of the ugly necessities of working in an office. I can't imagine why the person who is supposed to be doing thinks it's OK to just not do it. Although to be fair to her, she's very successful in getting other people to do her work for her. (See me filing tomorrow for example.)

I hate work. I hate people.

I'm happy about the election results.

My Morning Lesson in Civics

I voted this morning and I feel better about the election no matter how it turns out.

While I was waiting in line, I thought about all the women who fought and struggled to get the right to vote for the rest of us. And I thought about the stories I’ve heard where people in places like Africa wait in line for 12 or more hours to vote because they finally have the chance to do so. And I thought about the stories of people in this country and other countries who have died to make sure that elections are free and fair. And I thought about my obligation to those people.

I have to admit, I felt a little teary-eyed when I left the polls (although that could be PMS).

I also have to admit that I'm a little worried about some of my fellow voters. If they can't figure out how to follow a line, can we trust them with choosing the people who will run the country? I guess we have to trust them. And hope for the best.

Vote

I don't want to vote in tomorrow's election. In fact, I really, really don't want to vote. I can't give you a good reason why I feel this way. Or maybe it's because I can give you lots of reasons why I feel this way that I don't want to vote. Believe me though, I don't want to vote.

But you know what? There are candidates I want to see elected and proposals I want to see passed. I don't want to feel like I'm the one to blame if things don't happen the way I want. So I'm voting. I hope you will too. (Although maybe not so much if you happen to disagree with me. Sorry. I just want my vote to count for a lot.)

Losing My Mind and Other Disorganization

It's confirmed. I'm totally insane.

I asked my boss if I could up my hours and work full time for a while. It would help me out with some extra cash for bills (both medical and new computer) and help out at work. We're changing benefit providers and some of the grunt work is not getting done. Things, like filing, are a total mess. I thought it would be a no-brainer. And yet, apparently not. Even though I first asked about this almost three weeks ago, I didn't find out until last Wednesday that it would be OK for a two week period with the possibility for more. I start working full-time on Monday.

I'm sure that I've made a stupid move. I should have just tried to get a holiday job at Kohl's or Border's and kept my mouth shut about it. I have a feeling that I've killed the tiny, gasping remains of what used to be my career. And ruined any possible chance to go back to my reduced schedule. It's not like I have any kind of future at my current employer. I know that. Still, doing myself in like this? What was I thinking?

I was thinking, hoping, that maybe it's possible for me to work full-time with fibromyalgia.

I blame Rosalind Joffe and Joan Friedlander who wrote a book Keep Working Girlfriend: Women, Work and Autoimmune Disease. It inspired me, darn it. It made me think that I could balance my symptoms with engaging work. And get a bigger paycheck. My first step on that path was to see if I could work a full 40 hour week.

What I failed to take into account is that I'm still not feeling all that great. I've been going to the fibro center for three months now and I don't feel that much better. I'm tired all the time, not sleeping well, and in pain. The only positive thing that I can honestly report is that I don't have sugar cravings any more. That's good but it's not relief from fibromyalgia symptoms.

My mind wants to do more. My brain keeps sending funky fibromyalgia signals to my body. I'm stuck in the middle.

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On the upside, my concentration has been good enough that I've been able to read again.

• Dear Stranger, Dearest Friend by Laney Katz Becker. Young mothers with cancer. I cried.
• Chocolat by Joanne Harris. Chocolate, mothers, insane priests, gypsies. No tears but I felt sorry for the priest.
• Casting Spell by Barbara Bretton. A paranormal from one of my favorite writers. (Girls of Summer is on my all-time favorite list.) Sigh. I was disappointed.
• Wish You Were Here by Lani Diane Rich. Contemporary romance, a little mystery, father/daughter and mother/daughter relationships and not a paranormal element in sight. Hooray. Another favorite writer.
• The House on Tradd Street by Karen White. Yet another favorite writer moving to the dark, err, paranormal, side. This had the feel of an old time Gothic so it worked for me.

Next up, The Feast of Love by Charles Baxter. It takes place in Ann Arbor, one of my favorite places, and has this great bit. Charles, the narrator, is walking off a combination of bad dreams and insomnia -

Above me in the clear night sky, the moon, Earth's mad companion, is belting out show tunes. A Rodgers and Hart medley, this is, including "Where or When." The moon has a good baritone voice. No: someone down the block has an audio system on. Apparently I am still quite sleepy and disoriented. The moon, it seems, is not singing after all.

Don't you love that?!

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Oh! The other disorganization? That'll have to wait. It's still all spread around my office floor.