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.

Advertisements

Thing One and Thing Two

April 19, 2008

There are two things I want to share with you.

Thing One: Ruby Shooz over at  A Piece of Peace has written this gorgeous post.  I found it so beautiful and so true that I printed it off and hung it above my desk. Thought you might enjoy it too.

Thing Two: Kendall left this comment on my other blog:

I just wrote on my blog about my new-born theory that migraine (the bane of my existence) might be a result of over-stimulation…and that led me to wonder if fibromyalgia, CFS, and similar difficulties might also be. I will stick with what I know, which is migraine, but I’d be very interested to have you check what I said on my blog (which is Kendall’s Quest) WHEN YOU HAVE TIME (no hurry!) and see if it resonates for you.

It’s a very interesting post, and I think that there is a lot to what she’s saying. After I read this, I thought about how much worse my fibro has gotten since I’ve been at work. I started pondering how the work itself isn’t stressful at all right now. They are being so good to me there. I’ve been given light work, I stay at a place that is peaceful and has wonderful energy, and I’m getting plenty of rest. Still, my body has been screaming, my exhaustion level is off the charts, and my brain’s been pretty foggy.

After reading Kendall’s post, I realized that what’s different is the amount of stimulation. I commute in rush hour traffic for almost two hours each day. Our office is full of noises, lights, technology, people, hustle and bustle, and although my work is not stressful, I push myself to get a lot done. What’s changed is the amount of stimulation, and I believe that what Kendall’s saying may be a factor here.

A couple of days ago, I was driving home in tears. I was hurting, mentally exhausted and semi-depressed, because when I’m feeling this way, I worry about how I’m going to get through all of this– not just this particular job, but earning a living in general. My supervisor had said earlier, “You’re pushing yourself too hard. You even have a doctor’s note that specifies that you should be working less hours than you have been. Why don’t you come in at eleven tomorrow?”

So yesterday, I did just that. I spent a leisurely morning drinking coffee on the patio of the person I’m staying with. I did my bird/ tree/ sky watching thing. I read a little. I took it very slowly. I slowly packed my things for my weekend return home. Then I went to work, and as soon as I started hurting, I told my boss that I was leaving. I wanted to get home before my pain overwhelmed me, and before the rush hour traffic commenced. I worked a grand total of four-and-a-half hours.

It made all the difference in the world. When I got home, I was tired, but not pummeled. I was not hurting at all. I slept well. And today, I feel pretty good.

Of course, I will never be able to do this type of thing in the “real world,” but this has given me a wonderful opportunity to experiment. I’m going to really start paying attention to overstimulation, how to pace myself, how to start noticing these sensory overloads to see if there’s a connection. I also have to get this balance thing down better.

I won’t be able to do the four-and-a-half hour work day regularly, but maybe I can on Fridays, so that my entire weekends aren’t spent recuperating.

Anyway, it’s definitely food for thought (which has no calories by the way). If anyone has noticed a similar link, I’d love to hear about it.

Today…

April 17, 2008

…I feel like a human shin splint.

My first few days of work were wonderful and awful. It was so good to see all of my co-workers, and to get so many hugs. They’d actually left my desk intact– I couldn’t believe that it was still there waiting for me.

Half of the department is gone now. This contract was supposed to last a year, but it’s dragged on for almost two. Many people have become impatient about putting their lives on hold, and they’re moving on, finding new jobs and foregoing their severance. The people who remain seem tired and stressed, but still as kind and funny as ever.

I’ve been staying at the home of Kim, a supervisor in the department whom I love. Her house is almost an hour from the office, and it’s just beautiful. I go out on the deck in the mornings and drink coffee, listen to the birds, and watch old dead leaves float from trees, making room for new ones.

My body has not been holding up well through this, but my supervisor told me on my first day back not to worry about anything. She’s given me an unbelievably easy job to do, so there’s no stress involved. She also made it clear that I am to leave whenever I need to, and she doesn’t care if I’m late. “I just want you to get your severance, and to have a proper going away lunch like everyone else.” I heart her.

I have mixed feelings about it all. I’m so thankful for the opportunity, but I’m angry at my body. I’m coddling it, and in a way, so is everyone at work. Stress exacerbates fibromyalgia, but there’s absolutely none involved. I can sit or move around, or do anything I need to do to relieve the pain if it gets bad (including going home). If standing on my head would help the fibromyalgia, they’d provide me with a pillow and the space to do so. But nothing seems to matter. The fibro does what it wants to do, and what it wants to do is wipe me out with exhaustion and send pain shooting through my limbs. I find it all so frustrating. People can see the effects of this written on my face. I don’t want them worrying about me, or having to deal with this at all. It’s embarrassing to feel like a forty-seven year old ninety-two year old.

“I think the worst part of it is the mental aspect,” I told a couple of work friends. “The fact that I can’t control the pain or anticipate when it’s coming or how long it will last drives me crazy.” I try to keep it in the background, but it keeps screaming at me.

There are great lessons in all of this. I’m learning to let go and accept this gift that I’ve been given by the people at work, and to try to do it gracefully. I’m beginning to understand that I will never understand this syndrome, and that, try as I might, I’ll never be able to fully predict what it’s going to do. I’m trying mightily  not to hate my body for what it’s doing, but to instead listen to what’s it’s telling me, and to try to obey its orders as much as I can. I’m trying to learn to not be humiliated or feel “less than” because of all of this, but that’s been a little more difficult. Right now, I’m missing the part of me that was energetic and fun. I hope it comes back soon.

Quite honestly, I’m a bit terrified. I will never have an easier job, or one where I am accommodated to this degree. This wasn’t even a full work week, and I’m not holding up well. I’ll try again next week and the week after that, and hopefully, my body will respond better. But this experience has made me decide that I need to think much more seriously about the future, and how I’m going to survive financially with this uncooperative body of mine.

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.