Going Off Course

Today I’m going to go off course for this article and talk about a question that I’m asked over and over. The glaring question I face almost daily is, “As someone with Fibromyalgia, how do you do everything you do?”

That’s a very tricky question for me. It’s a question I have to answer cautiously. Why you ask? Because to explain it means baring my deepest fears, my insecurities. Yet, I will address it for you.

So you can better understand why that question is so prominent for me, I’ll tell you a little bit about me. My family includes, my husband, my son (a college student), and 2 young daughters. My husband travels during the week so it’s just me and the girls. This means I’m totally responsible for the house and taking care of the girls on my own in addition to continuing my career. That in itself is a job as both of my daughters are extremely active.

In addition to being a writer for FOG magazine and a political advocate, I’m also a copywriter and novelist. My novel was published at the end of October 2008. I’m currently working on 3 more simultaneously. Up until my family moved this past June, I also coached a competitive cheerleading squad.

I realized after the anger at my diagnosis that the only way to reclaim my life was to face it head on. Luckily I had an open-minded doctor who was willing to allow me to try different combinations of medications, etc. I finally found the right treatment plan for me: one that included medications, vitamins and exercise. This allowed me to focus on the most important medical decision I made throughout this painful and frustrating process.

The decision I made had absolutely nothing to do with medications, doctors or any other treatment. I had to change the way I thought.

I had to change the way I looked at life. That has been what made a difference in my life. I had to bring myself to the point where I allowed myself to be “sick”. What do I mean by that?

Crazy as it seems I spent a lot of time lying to myself. I kept ignoring all the flare warning signs. I just kept going until I crashed. I knew everyone who knew me knew I was sick and I felt like they looked at me differently. I was going to prove to them that I could still be me, that I could still do everything. Boy was I wrong! That frame of mind and attitude kept me sick and flaring constantly.

I would do really well for a week and cram a month’s worth of chores, errands, etc., into that week. Then I would pay for it for the next several weeks.

I didn’t think I would ever get out of that routine. The problem was I wasn’t the only one suffering. My family was suffering as well. They are the ones who had to watch me in pain unable to do even the slightest thing. Then one day my husband said to me, “This has got to stop”.

As the one who took everything personally since I got sick, I assumed he grew tired of dealing with my medical problems. Again, I was from looking at the negative in everything. Fibromyalgia meant I carried the stigma that I was less than my normal self. I couldn’t live with that. What I didn’t understand was that I was the only one looking at it from that perspective.

What my husband meant was he was tired of watching me make myself worse by trying to do everything the same way I had before. He wanted me to find the peace inside myself to cope with the changes to my life. He wanted me to find myself again. Funny thing was, I didn’t know I was missing.

I wish I could say I found myself quickly. Saying that, however, would be a lie. It still took the better part of a year for me to get to that place. The place where I actually liked myself again. To get there though meant facing all of the fears I’d kept deep down where no one else would look. I was afraid of so many things.

I was afraid of letting my family down. I was afraid of giving in to the Fibromyalgia and losing who the real me was. What I didn’t understand was that I was doing exactly that by trying to pretend I wasn’t sick.

I always thought I had to be perfect. Make sure my house was spotless, that my daughter’s clothes were ironed with that crisp look to them. I had to be the mom that was at all the parties and spent the night before baking and decorating all the cupcakes.

Basically I thought I had to be supermom and wife, and then adding in friend, daughter, sister and aunt to everyone else. I was the mom who never missed a practice or game or open house–anything that my kids were even remotely involved in.

It took realizing (with my husband’s help) that my life was spinning out of control for me to understand the damage I was doing. I heard the words Fibromyalgia and pretty much lost my mind. Yes it’s ok to laugh at that. I look back now and laugh a lot at how stupid I was. I wasn’t helping anyone, especially myself with the way I was acting.

So I took a long hard look at my life. I thought about what was most important to me and my family. It wasn’t until I did that that I understood that things around the house don’t have to be perfect for my family to be happy. It took them having a happy mom. How did this crazy, perfectionist who was sick constantly get to be the well rounded, happy and fairly flare-free person that I am today?

The main thing I did was give up the notion that having Fibromyalgia meant I was less than I was before. I woke up and finally accepted that I can be me and still have Fibromyalgia. I can take a day when the aches become worse and lie around resting to try and stave off a flare without feeling guilty. The main thing I gave up was guilt. Guilt drove me. Guilt defined my life. The guilt of being sick, the guilt of not always being able to say yes, the guilt of feeling like my husband was no longer getting the wife he’d married. Guilt can be a powerful emotion. One that needs constant supervision or it will destroy any chance you have at being happy.

You have to accept that having an illness doesn’t define you. You are you, the illness just is. It’s nothing more, nothing less. Once I understood that it was my mind set holding me back, making me sick I could focus on getting better. Not cured, but better.

I’ve learned to watch for the warning signs. I’ve learned to see a flare coming and allow it to be without fighting it. If I’ve learned anything from having Fibromyalgia, it’s that fighting a flare will only make it worse. You have to accept that, deal with it and move on. You have to get to the place where you can say, “This too shall pass”.

It’s been this life lesson that has done more good for me than any prescription. There is already too much that is misunderstood about Fibromyalgia. Don’t perpetuate the myth! Live your life your way. Not the way you think others think you should.

When your body says rest, do it. Learn to listen to your body. It does talk to you. Once you do that you will find that you will be able to build your energy, and build on your happiness.

Until next time, live life with hope and faith…

_________

About the Author:

Kelly Cozzone is a regular contributor to Fog Magazine. Besides writing, she is an ardent disability advocate in the state of South Carolina, where her efforts have changed lives.

Advocacy Plans

I’ve shown you through my work in South Carolina that change is attainable. With perseverance you can and will make a difference. After all the hard work, now South Carolina can make the claim as the first state to formally recognize Fibromyalgia Day.

Now you have finally made the decision that you want to get involved as a political advocate.

What should you do?

You’ve discovered ideas, opinions, and laws that require change. The kind of change that has the potential to positively affect the lives of others. Getting involved drives you, so what do you do first?

Let me take the time to try and help you get started.

My first piece of advice is to let you know that it is of the utmost importance for you to become entirely versed in the topic you’ve chosen. Obviously this isn’t the exciting portion of the job. Research is extremely tedious and can sometimes be the boring aspect of political advocacy. However, learning the ins and outs will give you the edge you need.

You will come to understand that having all the facts at your disposal will be a necessity. This data is the most vital tool you’ll utilize when you begin to constantly combat the arguments you will face. Locating and organizing all the information is a huge job. If done accurately and completely this process could take months. Advising you that this step is time consuming would be an understatement.

I’m not trying to discourage you, that’s the last thing I want to accomplish. However you need to enter the political arena fully aware of exactly what it takes to be successful. Otherwise you’ll wake up one day so frustrated you’ll want to quit. My main focus with this information is to try and spare you the level of aggravation I personally faced. To be successful as a political advocate, knowledge and perseverance are the keys to making change happen. Throw in a dose of determination and you’ll be unstoppable.

Let’s use my work as a disability advocate as an example for the steps I’ve just discussed. The term disability advocate is a broad and general term that requires you to decide which area of disability is your “hot spot”. The specific area you want to focus your attention. Once you’ve made that decision you’ll need to figure out the exact change you want to enact and which laws will be affected. The next step is to form an opinion as to how the law needs changed for the better. For example, is the law out-dated? After you’ve completed this step, it’s back to research. Yes unfortunately I said more research.

Now that you’ve formed an opinion and concluded which laws need changed you need to formulate a plan of attack. What I mean is you need to come up with an alternate law. Start by deciding how the law you’re challenging can be altered in order to make it more effective? This is the area that requires more research. You need to completely research the exact law you’re trying to change. Or exactly what is needed to have a new law enacted.

You will need to be specific in this area. The politicians you will be confronting need to see the value in the bill you are proposing. In other words, they need to see the positive effect the new bill will have on their constituents. They have to be able to sell it to the other members of the either the House or Senate. They also have to be able to see that this won’t have a negative impact on their own political careers. It’s up to you to convince them.

Okay, you’ve done your homework and have your game plan ready. The next step in this endeavor is to reach out to one of the politicians in your area. If you begin with the ones who represent you then you are more likely to be able to establish an open line of communication with them.

If you don’t know who your local politician is then visit your states website for either the Senate or House, which ever branch you are pursuing first.

For examples purpose let’s suppose you’re starting with the Senate, on your states website you will find a list of Senators, the area they represent, their party affiliation, and their contact information. I would suggest you chose more than one to write to. That way you aren’t limiting yourself.

Begin by drafting a letter that will not only introduce yourself to them but will also introduce the topic you wish to discuss. Be specific. Let them know the concerns you have and that you would like to talk with them about the change you are seeking. One main fact you need to keep in mind when communicating with Senators and House Representatives. They are very picky about the way they are addressed.

The proper way to address a politician is “The Honorable” then follow with their title which will either be Senator or Representative. So if you are writing to a Senator, the addressee should be “The Honorable Senator and then list their name. The other area that goes with this is making sure you are using the right title. If you are writing to a Senator, use Senator. This can seem like a small detail but if you want to be taken seriously then you MUST know who you are speaking with.

Don’t be discouraged if you don’t get a response right away. However, don’t be afraid to write more than once. Again, determination is a key factor. They need to see that you aren’t going away.

Your goal at this point is to find a Senator willing to sponsor the bill you want to see enacted. In my next article I will discuss what you need to do once you’ve found someone willing to sponsor your bill.

Until next time, live life with hope and faith…

_________

About the Author:

Kelly Cozzone is a regular contributor to Fog Magazine. Besides writing, she is an ardent disability advocate in the state of South Carolina, where her efforts have changed lives.

Sweet Carolina

The day I’ve worked for the last year and a half has finally arrived. Read more