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Archive for June, 2012

It’s hard to believe that it’s nearly four weeks since I last wrote anything here. The days pass too quickly. Time is getting away from me.

Not to say that my days aren’t full. They are. But recently, I watched a video called “Living with Fibromyalgia” (see below), and I had a bit of an epiphany. Since then, I’ve been living life a little differently, listening to my body, pacing myself on good days and taking it easy on days when I really need to. And it feels good.

Basically, the video explains the way the illness works and how five individuals deal with it. It really hit home with me. The bottom line is that I’ve wasted too much of my life being mad at my body. It turned against me early on. Rather than accept the way my system works and treat myself with the same patience and compassion I would to another person with fibromyalgia, I’ve let it get it embarrass, depress and anger me. That attitude has probably just made me worse.

Those angry days were wasted days. The days when I felt stupid because fibro affected my concentration and energy and shortened my education? Those were wasted days too. I’ve been embarassed by my clumsiness and my lack of athletic ability for my entire adult life. I shouldn’t have been, but I didn’t understand the way fibro worked.

I realize I need to treat fibro more like childbirth. All of my deliveries were natural. By the time I had my youngest son, I was a whiz at Lamaze. I’d learned to breathe with the pain, find a focus point to distract me, relax my limbs. Fibromyalgia requires the same plan of attack. So, instead of resenting the times the pain is bad, and feeling I have to make excuses to people to explain why I’m unable to do certain things, I’m going to just “go with it.” I’ll work, rest, work, rest. On days when I feel like crap, I’ll have a hot shower, put on my most comfortable clothes, gather together heating pads, cushions, my laptop, and favourite videos, and RELAX. And I won’t let myself feel guilty.

I’m going to apply the same philosophy to the days when my husband’s away on business – which is often. Rather than let myself feel lonely or act like a recluse, I’m going to do the things that I’m free to do because he’s away. That means I can go places he wouldn’t usually want to go. I can have meals when I feel like it – or not. I can eat what I feel like and forget about his favourites. Last week, I had poutine for dinner – first time ever!!! It’s sinfully fattening and unhealthy and delicious!

The specialists in the video “Living With Fibromyalgia” suggested friends and family should watch it too and I understand why. Perhaps it’s hypersensitivity, but I’ve often felt like I was being judged. I’ve been put on the defensive so many times. I wanted people to see the video not for their pity, but for their understanding. That way I’d never have to explain again. Diabetics don’t have to constantly justify their insulin injections, right? I’m so tired of people saying things like “I just ignore my pain,” I don’t let my pain hold me back,” “I just keep going even though I’m exhausted,” because all that says is “You’re a wuss, Linda.”

Just as irritating is having someone say “I’m sure I have it too.” That bothers me because once again, it invalidates what I’m experiencing. Someone else saying that they surely “have it” too basically minimizes my situation. Let’s face it. Specialaists say that 5% of the population has fibro. Now, people who are over 50 have certain aches and pains at various times – because of old injuries or osteoarthritis or lack of flexibility or extra weight on our frames. Menopausal women experience difficulties concentrating, mood swings and even panic attacks. That doesn’t necessarily mean that they have fibromyalgia. It’s possible they do, but the odds are still against it.

OMG. I am rambling, aren’t it? Better here, though, than to those living with me.

Anyway, I did something very empowering. I wrote a letter to family members, explaining that I was going to take another tactic with fibromyalgia and part of that was wanting the important people in my life to understand exactly what it was about. I was very careful with the wording – no recriminations, no pressure, a polite request.

One brother watched it immediately and wrote back. A sister-in-law left a phone message saying she wanted to know more. One of her closest friends suffered with it for the last twenty years of her life. One sister wrote back and cautioned that I “mustn’t let myself be defined by my illness,” and I wrote back that my purpose is to change that feeling.

One person wrote to ask if the video took as long as it said it did to download. Someone else wrote three days later with four words: “the link doesn’t work.” (by then it was no longer active). As far as I know, no one else actually saw it. They didn’t write back. My husband hasn’t watched it yet, but said he will. He’s already very supportive, though I think sometimes he needs his own support. Chronic illness can be hard on marriages. One son was unable to watch the video as he’s away on a military base. The other did call and we had our first real talk about it. I wrote to everyone aagain to say that the link to the video was no longer active and I’d try to send a copy of it when I figured out how to send a large file. I may be better off just saving a couple of copies on memory sticks in case anyone actually ever asks to see it.

So far they haven’t, but at least I’ve had the courage to bring my feelings out into the open.

So, back to the rest of what’s going on around me. Actually, there’s not a whole helluva lot. The weather here is perfect, we’re slowly adding more perennials to our gardens, my husband’s new job is going really well, our sons are healthy and happy, Cadeau is trying to get over fireworks trauma from this past weekend, Marcel (my son’s cat, who we’re “grandparenting” while he’s training at a military base) is building relationships with neighbourhood strays on the other side of our windows, and Cleo is still hanging on, enjoying what is surely her last summer on the back porch.

Life goes on, and life is good.

Learn more about “Living With Fibromyalgia” at http://www.livingwithfm.com/.

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