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!

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!

Down and Ow

June 9, 2008

I’m having a horrid flare. You know the drill– insomnia, pain screeching through every nerve ending, exhaustion, fogginess. I’ve given up on trying to figure it all out. Well, actually, I’m lying– I’m still trying to figure it all out.

I was up at 4:30 this morning, hurting and sleepless, so I did some searching for fibro information on the Web and found this great site— 100 tips for coping with fibro. I like the author’s route of changing diet and nutrition, and of going “au naturel” as far as medications. I’m going to start taking OPCs, which are a type of antioxidents, and I’m also going to try cutting out foods from the nightshade family for a while to see if it makes a difference. This includes tomatoes, potatoes, green peppers and eggplants. Sigh…no more baba ganouj.

I’ll keep you posted on this. In the meantime, I’d love to hear anyone and everyone’s best tips for dealing with fibro. Here are some things that I can’t do with out, and one thing that I want really, really badly.

Bath Therapy Bath Salts: You can get these at any drug store, at Target, Wally World, etc. A long soak in a bath of this stuff really does help me.

Heating Pad: I named my heating pad Antonio Banderas, which makes me feel a little less old ladyish when I lie on it. I really hate heating pads, but it does bring relief.

Lidoderm Pain Patches (by prescription): Make sure it’s Lidoderm, as some of the others have um, killed people. This is great for dulling pain in a localized area. You’re only supposed to use one at a time, but I often cut mine in half so that I can get relief in more than one place at once.

Massage: Can’t afford this often, but a really good massage therapist can work wonders sometimes. One day, when I’ve one the Mega Millions Jackpot, I’ll hire a live-in personal masseuse. I’ll call him Antonio Banderas, and change my heating pad’s name to Bud or Mac or something.

Love: Being around kind and loving beings makes my life gentler, and often eases things. My boyfriend and my cat make me feel all warm and fuzzy inside, and I’ve recently gotten a new little puppy that sits on my lap and warms my heart. Gentleness really does help combat the harshness of daily life.

Memory Foam Mattress Topper and Pillow: These haven’t helped so much lately, but for a few years there, I would not have been without them.

Osim IMedic Massage Chair: At about $2000, I simply can’t afford one of these, but this chair is amazing. It’s available at Brookstone, and I recommend that you try one out if you have a store nearby. Honestly, it’s fantastic, and I’ve actually driven to Brookstone a few times to use one when I’ve been hurting badly. My reason for this has been to experiment, to see if it makes a difference when I’m hurting a lot. It does make a difference– it really does. Now, if Brookstone would just gift me with a chair in exchange for this plug, I’d really appreciate it.

If I think of any other things that you haven’t heard a thousand times, I’ll let you now. In the meantime, what helps you?

Rough Week

May 4, 2008

The weather changed, and that changed everything. It got cold, and my body started its rebellion. My frustration level rose to new heights, and a few days ago, I struggled mightily with getting up, moving around, and getting my ass out the door to go to work. Seriously, I didn’t think I could do it. I woke up with pain shooting around my body like a pinball, and my exhaustion was enormous. I tried stretching and adjusting my thoughts, because I wanted to keep the focus away from the pain and onto the the fact that it was a new day, and that I needed to get to work. I ended up going back to sleep twice, partly because I was physically wiped out, and partly because I wanted to just wipe the morning slate clean and try again, to see if I could wake up in a more functional way. By the third attempt, I decided that no matter what, I was going to get to work. I finally did– at about 2:00 pm.

This does horrendous things to my thought process. The inner dialog I have is sometimes downright mean. “You’re NUTS!” “You’re weak!” “Think of all the people who are so much more disabled than you. Think of all the people who have so much more on their plates– they all manage to make it into work.” No matter how harsh and judgmental others can be, it’s nothing compared to what I do to myself.

I finally made it in, and as I sat at my desk, I realized that the pain was just not going to go away. I tried to tackle my work while sitting, but my hips, butt and legs felt as though they were on fire. I tried standing up to do it, but my lower back and legs wouldn’t hear of it. I had just driven almost an hour to work, and within thirty minutes of arriving, I knew I’d have to leave. Tears of frustration started welling up, and finally, I went to tell my supervisor that I was going home. I wanted to hide, because I knew if anyone spoke to me, I was going to lose it. Of course, a couple of them did, and I just started crying like a big baby. So we can add “extreme embarrassment” to the mix here. I melted down.

I wanted to be in my own bed, in my own home. I drove to Dayton, and drove back to Columbus the next day.

It seems that my body is calling all the shots these days, telling me what it will and will not tolerate at any given time. I don’t have the fight, the energy or the strength of character to resist it. My brain is unwillingly following my body’s commands, and I hate it.

Many people have Fibromyalgia, and they work 9-5 jobs. Many people do what has to be done, regardless of what their bodies are feeling like. I’m a wimp, and I’m angry at myself for not being stronger. At the same time, I want to protect that little tiny part of me that is hurting, that feels vulnerable, that longs to do whatever it takes to feel like me again.

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There’s one thing I know that’s linked with all of this, but I can’t quite figure out how. If I could get a handle on it, I may be able to figure out how to regain some control over my mind and body. At the risk of sounding like a total fruitcake (like that’s ever bothered me before), I want to say that on some level, I’m extremely intuitive. I’m empathetic, and hyper sensitive to whatever mood is in the room at almost any given time. When I’m around people with bad energy, I can almost touch it. It blows me around like a gale force wind. I’ve been this way since I was a little girl.

Fibromyalgia makes people talk. There is gossip and speculation, and that whole, “She doesn’t look sick” thing. I try to ignore it, and steel myself against it. I try to put on my invisible force field, but it’s very worn, and has holes in it.

It’s not my imagination, or at least I don’t believe it is. Before 9/11, I was overcome with depression and feelings of dread like I’d never experienced before. Sometimes, I can just walk by a person and almost get knocked down by something that they’re exuding. The term, “I feel your pain,” has a literal connotation for me. I just feel things in a really strong way.

When I was having my little meltdown, and waiting to talk to my supervisor, I was standing near the cubicle of a woman I will call Mary Jane, a bitter middle-aged woman who wears matching sweater sets and walks around with a hateful look on her face. She complains constantly, and is tremendously concerned about who’s doing what in the office. Although she apparently feels that she’s being given more work than anyone else, the reality is that her workload is about the same as everyone else’s.

She shoots me daggers all the time, and her bitterness makes me feel extremely sad. Everyone is in the same boat here, but we paddle in different ways– we’re all losing our jobs, everyone’s working to tie up loose ends before the contract expires. There’s a sense of sadness and relief and impending instability. People are making the most of it.

Mary Jane however, is angry. Furious. And a lot of her fury is directed at me. She’s like the kid you grew up with who was obsessed with the fact that the other kid got more marbles, or was always chosen first for kickball. “It’s not fair,” you can almost hear her whine.

When I came back to work, she greeted me and asked me how it was that I had returned. “Actually,” I told her, “I think that they were just being extremely kind to me.”

This apparently pissed her off to no end.

So during my meltdown, standing near her desk, Mary Jane asked, “Are you okay?” I was hoping no one would talk to me, and that I could leave without a big to do. I wished that I had the power of invisibility. I told her no, but that I’d be okay, I was just hurting. Standing there, the hostility that was drifting toward me from Mary Jane was making me hurt more. Her words expressed concern, but I was feeling something else.

My supervisor assured me that it was okay for me to leave. She took me by the manager’s desk so that she could assure me that it was okay. I felt like I was being paraded around the room, though that was not the intent. I just wanted to leave, I didn’t want the drama. My supervisor walked outside with me, and I tried to put into words what a hard time I have with being judged and gossiped about. It’s a huge contributor to the flare ups, and it was just bowling me over at that moment.

“Mary Jane is being such a bitch,” I said. “I can’t believe how much she’s changed from when I was here before.”

“Really?” my supervisor said. “I just noticed her expressing concern for you.”

She was right, and I felt terrible for having said anything.

The next day, Mary Jane came by my desk, full of the milk of human kindness. “Are you okay?” she asked again.

“Yes, but Mary Jane, I need to apologize for melting down in front of you. I was just hurting a lot, and I knew if I talked I would start crying, and that’s just what happened. I’m so sorry.” And I meant it.

“Oh no,” she said, “I’m just concerned about you.” She asked me some questions about Fibromyalgia, and said that I looked exhausted. I told her that because of the Fibro, I often don’t get a lot of sleep. “Well, I was just worried about you, and wanted to make sure you were okay.”

Wow. How nice. Apparently, my radar had been all wrong. Beneath that angry exterior was a coworker who cared. I realized that I needed to get my thought process in check– that my intuition could sometimes be faulty.

Within fifteen minutes, my supervisor was at my desk. “Do you have enough work?” she whispered.

“Oh God yes,” I told her, and showed her all of the things I had going on. Believe me, many trees have died to provide me with enough paperwork to keep me busy throughout the day.

“Good,” she said, “because Mary Jane just went to her supervisor and told her that you needed more to do.”

I was shocked. I told her about Mary Jane’s visit to my desk, and of the concern that was oozing from each of her pores; about how guilty I’d felt for misjudging her, and that I’d apologized.

But my intuition had been dead on, and the feelings I was picking up on were correct. A coworker later told me that a couple of weeks ago, Mary Jane had cornered her, grilling her on why I was getting special treatment, and quizzing her on exactly what my medical condition was. She’s crazy-angry, and my presence just adds fuel to her fire, despite the fact that my work has no impact on anything she does.

I’m not kidding– just being around someone like this is extremely hard for me. In my stronger days, I could put up my force field and ignore crazy, negative behavior– in fact, in the past, I’ve held positions where I actually diffused it. Now I’m at a low ebb, and I find that instead of being able to fight it or ignore negative energy, it just sort of gloms onto me and leaves me weaker and hurting more. It drains me of my super powers.

“You know, I hate it when I’m right,” I told my supervisor, referring to my comment the previous day. And I really meant it.

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I hope some of this makes sense. This is my long-winded way of saying that I think that there’s a connection between this hypersensitivity, empathy and intuition, and my Fibromyalgia, or at least the flares. Are any of you wired in this way?

Note: I realize that I’m dumping here, but my Fibro blog is my official dump station.

I feel horrible. Poop. I get so excited when my body feels better, then WHAMMO! The fibro kind of chuckles and says, “Not so fast there, toots.” Yes, it calls me toots.

Anyway, the weather took a sudden turn for the colder, and I think that may be the reason for this. There is no part of my body that doesn’t hurt, except for maybe a few eyelashes. I’m going to go back to bed, and hope that tomorrow’s better.

Today…

April 17, 2008

…I feel like a human shin splint.

This post is from my other blog. I’ve decided to post it here too, because it has a lot to do with fibromyalgia. From time to time, I’ll be writing follow-ups to this story on this blog and I wanted you to know the back story, so that it would make sense. So here it is:

Angels Angels Everywhere

April 8, 2008

For some reason, I’m having a hard time putting this post into words, but I’ll try. It’s probably going to sound all new-agey or hocus pocusy, m’kay? I have to say it though, so here goes.

Of all the great mysteries in my life, the one that has always puzzled me most is how fortunate I am. Things can get stinky bad, but really, the number of incredibly good people I’ve known and the kindnesses that I’ve witnessed have often left me feeling amazed and hopeful. Of course, when I’m on the receiving end of the goodness, I feel amazed too, but it’s mixed with a sense of being undeserving. Maybe that’s the Catholic maternal/ Jewish paternal genetic double-whammy, or some Wayne’s World “I’m not worthy” thing, but it’s true. When it gets right down to it, no one owes me anything, and the good stuff is just icing on the cake. I’ve gotten so much icing, and I can’t for the life of me understand why. This isn’t some sort of false modesty, it’s just fact. Over and over again, just when I feel that I’ve reached my lowest ebb, something wonderful happens.

My supervisor e-mailed me last week to see if we could get together, “to discuss business and because I miss you!” I missed her too– we hadn’t spoken for months. She is one of the feistiest, smartest people on the planet, and I learned so much from her. Unfortunately, my physical health dwindled considerably while I was working for her, and I felt less competent and productive than I ever had. I took a leave of absence last summer, thinking that I’d rest and regain my strength, but I never did. What started as a short term leave, ended up being forever. I felt exhausted, depressed and embarrassed, and when my long term disability claim was rejected by the insurance company, I didn’t appeal their decision. I had grown tired of jumping through hoops trying to prove my case, and of struggling to retain my job, because the more I fought, the worse my condition became. I’m embarrassed to admit that I gave up. Not just the job. I gave up my self-esteem, my identity as a competent worker, and my refusal to succumb to Fibromyalgia. While I was with this corporation, the department I was in was outsourced. Most of us became contract workers, and there was a severance package involved at the end of the assignment. So, I gave the severance up too.

I e-mailed my supervisor back and told her that I had a doctor’s appointment in Columbus on Wednesday. We agreed to meet for lunch afterward.

“So what are you two going to talk about?” Tom asked.

“Well, I imagine that she has to ‘officially’ fire me at some point,” I told him. “So, we’ll get that over with, and then we’ll just catch each other up on life.” I was mentally preparing for it. Although I knew I was already canned, I promised myself that I wouldn’t cry when I heard the word “termination.”

We met. We hugged. We ate. We talked. She did not terminate me, although she very nicely offered it as an option. She also said that I could resign. But what she wanted me to do was to try coming back to work, not even for the entire length of the contract, which is probably sometime in July, but just until the end of May, so that I can collect my severance.

Okay, I’m crying. Hang on a second.

Okay, I’m back.

I told her that my body may not allow me to work as long or as steadily as I could before, but that I really wanted to try. We discussed the fact that I no longer live in Columbus, and she said that she’d check to see if she could find a place for me to live during the week. I said that I’d check around too.

The following morning, she e-mailed me back. A supervisor and a co-worker had each offered me places to stay, and another one offered today (I’ll still come home on the weekends).

I know I’m not explaining all of this well, but things have been so crazy this past week, and I’m kind of rushing through, trying to explain.

Here is the short version:

Just when things seemed that they couldn’t get much worse, I’ve been offered an opportunity to work for a few weeks at the job I held before my Fibromyalgia got so bad. We need the income, and if I can make it through to the end, I’ll have a small amount of money which we can use to move. If possible, I’m also planning to earmark a small portion of it for a teacup pup!!!!!!! It’s not a lot of money, but right now it seems like a fortune.

Time after time, this woman has gone to bat for me. She’s not only my supervisor, but my friend, and she never gives up on me. Her actions, and the fact that others have offered to open their homes to me overwhelms me. My coworkers are incredibly sweet. No one gains anything by doing all of this (in fact, they’re giving up some things). It’s just kindness, pure and simple, and it makes me feel very humbled and emotional.

See what I mean? I’m not kidding about all of the “Touched by an Angel” stuff that happens to me. I’ve been so lucky to have known so many angels.

Obviously, my life’s going to change drastically for about a month and a half. I’m not sure how often I’ll be able to write, but I’ll post when I can. I’ve been reading your blogs, but my brain’s been a little too scattered to comment right now. I promise, I’ll play catch up soon. The people at work aren’t the only angels I know.

I’ve got to go start packing.

Note: The guy in the photo has nothing to do with any of this. I just love the picture.

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.