I was invited by my friend Kathy over at The Fibrochondriac to participate in her blog carnival. The theme of her carnival is: What do you want people to know about you?

I was surfing around through my old posts, looking for an appropriate one to share, and I came across this post I originally published October 13, 2008, the same month I began my blog.

Selflessly Selfish

I struggle every day with who I am. I am different because of the Fibromyalgia. I am not the independent, fiercely productive person I once was.

Every morning I envy (but am grateful for) my husband and his ability to jump out of bed, hop into the shower, and rush out the door on his way to a destination where he knows his purpose and is able to perform at a high level. I lie in bed with muscle soreness, a dizzy head and complete exhaustion and wonder, “how am I going to contribute today?”

And it is not simply how am I going to contribute to my house and my husband, but how am I going to contribute to my physical and emotional wellbeing, and how am I going to contribute to the world around me.

Sometimes it is the smallest things I do that contribute the most and make me feel the best. I dry my hands on a dishtowel rather than a paper towel. Yippee! I just saved a tree. I pick up the wrapper from a straw that a fellow patron at the coffee shop has let the wind take away. She doesn’t know it, but I do and it makes me feel good.

There are days when I let the wrapper blow away. Days when I tell myself I am in too much pain to bother, but I never feel good about those moments. I always feel that I have given up or given in to the Fibromyalgia. If too many of those moments build up I get depressed, and then it becomes even harder to live productively with FM.

That is the point I am trying to make. I struggle to be a better person for myself. To be someone that, in spite of all that is different in my life, I still feel useful and productive, and that in very small ways I am contributing to my world. By trying to be conscientious and selfless I am being selfish, because I am the one who benefits the most.  And the small things add up.  They really do make a difference.

So what did I do that was so great today? Nothing so far, but the day is not over. I still have time.

Wow! Rereading this post really took me back. It really made me take a moment and reflect on how much has changed in the 18 months since I began this blog.

And that is what I want you to know about me: I have changed. I am different. I am improved.

I am no longer at the mercy of Fibromyalgia. I am a participant in my health, not an onlooker. And I got here by making many small changes:

I created a community, starting with this blog, which brought people like Kathy into my life. I began sharing more and worring less because I have a greater support foundation to rely on.

I began doing research and filtering the abundance of information on Fibromyalgia to determine what fit best for me. I determined a holistic approach was more appropriate for me than the pharmaceutical approach taken by most doctors.

I added supplements to my daily care.

I began practicing yoga and cut gluten out of my diet. Through research, trial, and error (and believe me there were years of error) I found what works for me and my health.

I slowed down…… and took many baby steps to avoid making those painful leaps.

This has been a true journey, and I am so grateful for how far I have come. It was not without work, setbacks, and a lot of effort. But the foundation for my change came from the belief that I could improve, and that it was up to me to figure out how.

I am still frequently tired and dizzy in the mornings. I still have daily symptoms. I am not always able to contribute. But my progress is discernible.

I hope this encourages you. I hope you are able to look closely at your daily habits and routines, and distinguish what nourishes you from what holds you back. There are many components to Fibromyalgia we cannot control. Take a look at what you can, and honor yourself by making the best choices for your particular situation. You can change. You can improve. Believe it!

There is a lot of Fibromyalgia information on the web. In the same day – same hour really – you can read seven “expert” and yet conflicting articles. One blog (maybe mine) will tell you to try yoga, while the next will tell you to avoid all types of exercise. One expert will tell you the condition is rheumatological, and the next will tell you it is neurological. One article will tell you your symptoms will never go away completely, the next will say you can heal completely if you do this, and don’t do that. And some articles simply take all the conflicting information out there and regurgitate it in a way you know the author researched Fibromyalgia the same day they wrote the article.

How do you filter all this information?

Who do you believe?

Where do you go for your expert advice?

Fibromyalgia has slowly become current. And by that I mean with FDA approval of drugs to treat FM, and with the marketing that comes along with it – to us via media, and to health practitioners via free samples and kick backs – Fibromyalgia is visible. So of course every health expert and health blog must have something to say on it or they are not being current. This benefits us in a lot of ways, but it also creates a problem of authority.

Who do you trust?

Who do you believe?

I recently received an email asking me about a current book on Fibromyalgia. Is it authentic? Is it worth the read? Is the author simply looking to cash in on the newest hot topic?

Having not read the book myself I could easily have said “sorry I have not read it” and moved on, but by creating this blog I have positioned myself as a type of authority on Fibromyalgia (and I believe patient experts are the best experts), so I shared with her my general opinion on all Fibromyalgia related information out there:

Knowledge is power. If you are interested enough from researching the book, I say get it and read it. It may turn out that you disagree with the authors findings/opinions on FM, but it can often be just as helpful to read literature we disagree with, as it is to read a tried and true information source.

But be a savvy reader. Blind faith, blind trust in “authority” is just scary. Especially in this age of the web when anyone can write and publish an article, and call themselves an expert. A healthy amount of skepticism is good. Trust yourself first, and then take away from your research the things that serve you best. I have had several people tell me that yoga sucks! I disagree, but I leave it at that. It is not up to me to convince them otherwise. Because truly, the only thing I am an authority on is my daily battle with Fibromyalgia. Keep this in mind when reading all the “expert” advice out there; you are your own best authority.

And the sign said everybody welcome, come in, kneel down and pray
But when they passed around the plate at the end of it all,
I didn’t have a penny to pay, so I got me a pen and a paper and I made up my own little sign
I said thank you Lord for thinking about me, I’m alive and doing fine ~ Five Man Electrical Band

When I thought about what my first post in over a month should be, I could only think about how difficult it has been to balance my new professional career with my on going FibroHaven responsibilities.

First let me start by saying I am thrilled to be working again. Thrilled that my body is cooperating for the most part. Thrilled to be out in the world, making connections, networking, and feeling like a productive person again. Is it horrible that my self worth is so closely tied to my ability to make a paycheck?

All my work on FibroHaven was satisfying emotionally and spiritually, but never financially. I LIKE MONEY! I like the freedom it brings. I like contributing to my household again. I like seeing a light at the end of our Debt Highway.

That being said, I have missed FibroHaven – missed my blog and facebook community, missed tweeting with the FM community on Twitter, missed the local members of my support group and our therapeutic meetings. It has all been neglected.

I think we all clearly understand about how hard it is to find balance living daily with chronic illness. It is always a matter of “If I do this, I know I will not be able to do that.” Prioritizing, making sacrifices, coming to terms with limitations, and on and on. Living well becomes a matter of balancing options and making smart choices.

I can tell you the smart choices I have been making for the better part of a year are really paying off now. I completely contribute my ability to work to the elimination of gluten from my diet and to my practicing yoga. My body has responded and rewards me every day. Even on bad days, I recover more quickly and have new tools – breathing exercises, stretching, etc. – to help me through.

But my heart is still in FibroHaven. So now it is up to me to find the balance. I know I can. I know I will.

And breathe…

I was standing in my favorite Starbucks last week. My mood was heavy and pensive – wondering about my current path and recent choices, lamenting my time away from FibroHaven – and then I read this on the cover of a beautiful book of quotations:

Throughout your life there’s a voice that only you can hear. It’s a call to the true value of your life – a call to make a difference that only you can make. If you never hear it, something magical will be lost. But if you hear it and heed it, then your life will become a wonderful romance and adventure. Now is the time. Jump in. Make a splash. Change the world.

Romance, adventure, a magical life – isn’t that what we all want? What we all hope to achieve? My voice is telling me I am not currently on that path, but that is okay, because I can hear my voice, and I trust it to guide me back. I trust me. I trust my journey, with all its offshoots and distractions. Today my splash is little, a ripple really, but I am building up momentum for a giant cannonball.

What is your voice telling you? Are you ready for a little romance and adventure?

What did you do?

I’ve been asked this question a lot since returning to work. What did you do before this? It is an interesting question and I don’t think I have decided how to answer it yet.

Do I tell them about the accident that brought my life to a screeching hault? Do I tell them about the months spent struggling to regain my ability to speak coherently? Do I tell them about the pain, the bouts of depression, the fatigue, and general disconnect from life? Do I tell them about starting this blog? Do I tell them how I was so inspired by this blog I started FibroHaven Foundation?

No, I don’t think I should. Essentially what they are asking me is how are you qualified to be in this position? What have you done in your past to allow you to do what you are doing in your present? They want to know what I have done, not what I have been through.

I had many successful years working with Fibromyalgia before the accident. I am plenty qualified. But I am also concerned about how my illness may be perceived. It is something we have discussed at support group meetings in the past. Do you tell your employer/prospective employer that you are living with a chronic illness? If ever there was a slippery slope…

My current employer knows all about FibroHaven and seems completely unphased by it. He is actually quite impressed with what I have accomplished. But early on in my job search I am certain I was not chosen for a position because my potential employer read my blog. He basically patted me on the back and said “You are doing great things with FibroHaven. Keep it up.” This came shortly after he mentioned he has two close relatives with Fibromyalgia. Do you think his experience with them prejudiced his value of me? I do.

So how much do I share? I am not sure. The only thing I am certain of is that I do not want my diagnosis of Fibromyalgia to influence what my colleagues think I am capable of doing. I want my actions to determine my value, not my diagnosis.