Post Bike Ride Post

June 22, 2008

Well, it’s the day after my bike ride, and no flare. A little less energy, but NO PAIN. This is amazing!

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The supplements are definitely helping! Over six miles on my beloved bicycle today, and while that’s a far cry from last year, and an even farther one from the year before, it’s still progress! I had enough energy left over to do a bit of grocery shopping, write this little update, and I’ll be cooking dinner in a few minutes.

Of course, the real test is going to be later– I took it very easy on the riding, and I’m keeping my fingers crossed that I won’t have a flair, but I feel really hopeful. And hopeful is a very, very good way to be feeling. It’s been quite a while!

The Girl from the Ghetto has written a post about supporting arthritis research. Please take the time to visit her site, and see what she has to say. There are also links to contact your congressmen about supporting important new legislation.

Thanks for the information, Ghetto Girl!

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!

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.

Well, if I wait until I’m feeling better, it will be a long time before I post anything, so I’m going to write a little here, just to stay in practice.

For some mysterious reason, I’m feeling pretty down right now. There’s no explanation for this that I can come up with, so I’m just trying to ride out the storm, and act as if everything’s okay, because the reality is that, well, everything’s more than okay.

The past week or so has been extremely frustrating. My thinking’s been foggy, my body hurts, the mood’s been low, and I feel sort of disconnected. I’m not sure if it’s the fibromyalgia, menopausey stuff, our tenuous financial situation or just plain old depression, but it’s frustrating me to no end. All I want to do is feel like myself again.

I have so much to be thankful for. It’s Christmas, and I’ve got a loving, supportive boyfriend, a wonderful family, a roof over my head and twinkling lights on the tree. These feelings have nothing to do with anything external, and I’m anxiously awaiting a return to my “normal” self (which, if you read this blog, you know is anything but normal).

Tom says that I need to “get it out,” and talk about it. He says that I tend to go inward when I feel this way, and he’s right. The reason is this: I have absolutely nothing to complain about. When I look around and put this into perspective, the mountainous hardships that others face make mine seem like tiny little dust motes in comparison.

I know this is a really downer post. I don’t mean it to be. But here’s how I’m sort of feeling right now. As I internally whine and complain about my less-than-stellar mood, my aching body, or my dire straits, I’m staying mindful of those who have nothing. As much of the world fights over parking spaces, argues with sales clerks, and complains of shopping yet to do, or of presents still to wrap, I think about the people in New Orleans who are still displaced. I worry about those who live in parts of the world where they can’t even leave their homes and feel safe, and those whose wish lists consist of nothing more than food, shelter, clothing, and peace. When my body hurts, I think about people confined to wheelchairs who’d kill to be able to do the things I do on any given day. As I sit here missing friends and family, I feel so exceedingly grateful for the kind and loving people who are in my world, regardless of the number of miles that separate us.

Recently, I came upon an article about Kwanzaa and its traditions. There are seven guiding principals, which I think are quite beautiful. Here they are:

  • Umoja (oo-MO-jah) Unity stresses the importance of togetherness for the family and the community, which is reflected in the African saying, “I am We,” or “I am because We are.”
  • Kujichagulia (koo-gee-cha-goo-LEE-yah) Self-Determination requires that we define our common interests and make decisions that are in the best interest of our family and community.
  • Ujima (oo-GEE-mah) Collective Work and Responsibility reminds us of our obligation to the past, present and future, and that we have a role to play in the community, society, and world.
  • Ujamaa (oo-JAH-mah) Cooperative economics emphasizes our collective economic strength and encourages us to meet common needs through mutual support.
  • Nia (NEE-yah) Purpose encourages us to look within ourselves and to set personal goals that are beneficial to the community.
  • Kuumba (koo-OOM-bah) Creativity makes use of our creative energies to build and maintain a strong and vibrant community.
  • Imani (ee-MAH-nee) Faith focuses on honoring the best of our traditions, draws upon the best in ourselves, and helps us strive for a higher level of life for humankind, by affirming our self-worth and confidence in our ability to succeed and triumph in righteous struggle.

Nice, huh?

This mood will pass, and when it’s gone, I’ll still be left with the amazing gifts that are a daily part of my life (this includes you, dear reader). In the meantime, I wish you all truly beautiful holidays, no matter what you celebrate.

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.

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.

I rode my bicycle 15.73 miles on Saturday, and 16.5 miles on Sunday, and so far, I feel great!!!!!!!! Please, oh please, oh please….let this be a remission!