Sunday, November 23, 2008

Fibromyalgia and What I Learned

When I was first diagnosed with fibromyalgia, I tried to tell myself that many other people were much worse off than me. This is undoubtedly true. As bad as my worst flare-ups would get, I knew that eventually I'd feel at least a little better. I learned that fibromyalgia is not degenerative. It can be debilitating but it wasn't going to kill me. So, I told myself to suck it up and get on with life.

That worked for me ... uh, not at all. I never fully admitted that my life had to change. I threw myself into the vicious cycle of doing too much, having a flare-up, crashing, recovering, doing too much, and so on and so on.

I was depressed, in pain and exhausted all the time. I finally broke. I took advantage of my company's employee assistance program and made an appointment with a therapist. She told me something that changed my perspective. She said that it didn't matter that other people were worse off than me. She said that there would always be someone whose situation was worse. That didn't mean that I had to discount what was happening to me. It didn't mean that I couldn't feel bad about what was happening to me.

I got permission to feel sad and angry and afraid about the changes in my life. Sometimes I still feel sad and angry and afraid. But you know what? I don't feel guilty about it. I learned that masking my feelings about my illness is not productive. I learned that I have a right to mourn the life I lost. When those lessons sunk in, I started to see that I could make a new life for myself. I could see myself living a good life even though I have a chronic illness.

5 comments:

Sherril said...

Hi again, Alice. I'm doing a page on the FFC and I'd like to include a link to your blog posts on the subject, if that's OK with you. Here's the link: http://www.theiciexperience.org-a.googlepages.com/fibromyalgiaandfatiguecenters. Let me know if you DON'T want to be included, and keep up the great work; I was diagnosed 20 years ago as of April 2009. It's a constant process, learning to deal with living with CI. I like the Oprah analogy of peeling the layers of skin on an onion...

Unknown said...

How do you actually deal with the pain? I was diagnosed in Aug of this past year and I have been in a bad episode of pain for a week and a half now. Debilitating pain and I refuse to take pain meds.

Thanks :)

Alice B. said...

Hi Sherril - I'm honored to be linked to your site - it's one I read all the time.

Hi Endless Possibilities - dealing with pain is tough. I find pain meds don't really help me so I don't take them either. Heat does help and so does gentle stretching. Sometimes I just go back to bed.

Sherril said...

Thanks Alice!

I also get a lot out of warm water (at least 87 degrees) exercise.

Unknown said...

Thanks so much :)