Archive for the ‘FIBROMYALGIA AND ME’ Category

like,quotes,thought,txt,life,moment-5883bba7d4638f2ed6a2fdbf964f22b0_hA name forgotten, an appointment missed,
a recipe that must be read and reread.
It sometimes frightens, that feeling that something is lacking,
that my mind will never function
as it did in younger years.

“Play sudoku,” someone suggests.
“Use your brain more,” another adds.
“Don’t type. Use a pen. Read.”
There is no
end to their cures.

But a brain is like a sponge, I tell myself, and mine is saturated
with images of a man on a bike laden with a hundred orphaned hubcaps,
and another who cheerfully pulls a tall wagon behind him, a free ride
for a grown woman, her legs stretched out, her gap-toothed smile pure glee.

Sounds vie for space here.
The rich tones of church bells at noon, the rush of sirens in the distance,
the rattle of carts and wagon wheels as the more resourceful, the more desperate,
scour the curbs for returnable bottles before garbage day,
the quiet voices from neighbouring verandahs on summer nights.

If my brain can only hold so much,
let it be this,
And let the random lists and names of unimportant celebrities
seep away.


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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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Try to imagine spending twenty-four hours inside a 30-inch cube. Once free, you are completely stiff. Your joints ache. Your muscles go into spasm when you walk. Your fingers hurt to straighten and have no strength. You can’t think clearly and all you want to do is rest.

Now imagine it happening for no reason other than increased stress, or a few hours of lost sleep, or time spent directly near air conditioning.

For the past few days, I’ve been sidelined by this invisible condition that few people understand. While not fatal, it cuts productivity, destroy careers, strains relationships and drains self-esteem.

These vague, “here today, gone tomorrow” pains have been a part of my life since early puberty. Before then, I was like any other child, able to run and climb and hang upside-down on our jungle gym. But at eleven or so, muscles in my legs started to spasm. Then, my mother labelled it “growing pains” and massaged rubbing alcohol into my hamstrings and calves to stop the cramping. In a family of seven children, I was the only one who seemed to have pain issues, and though no one said it aloud, I believed the perception was that I was a crybaby or hypochondriac, or simply desperate for attention. It was the beginning of the “stigma” I would feel for the rest of my life as various parts off my body mysteriously turned against me.

Despite being the picture of health, shooting, burning pain and numbness in my left trapezius muscle plagued my teenage years. Sharp stabs shot down my arm, up my neck, and down the left side of my back. Our doctor diagnosed mild arthritis and mild scoliosis and joked that at fifteen, I had the body of a forty year-old woman. He arranged regular physiotherapy sessions for me but it only seemed to make matters worse. Eventually, chronic pain kept me from participating in activities that other girls my age could easily do. Doctor’s notes made me exempt from any physical activity that aggravated the problem, and I soon began seeing myself as “different.”

Everyone wants to feel strong and capable and vibrant, and I am no different. But over the years, nearly every new activity or increase in physical work backfired on me, causing bouts of pain that lasted months longer than the activity. I’ve been in therapy for knee, jaw, shoulder and neck issues more than I can count. They’ve exrayed, scanned or “MRI’ed” every part of me. I’ve seen chiropractors and rheumatoid specialists, and had traction and acupuncture. During two years of right shoulder problems, the muscles atrophied and the joint “collapsed. ” I’ve been told my muscles are “twitchy,” meaning that they overreact to stimuli. And I’ve been through the gamut of medications, from muscle relaxants to cortisone injections, Oxycontin to Demerol to Darvon, morphine to anti-seizure drugs, sleep aids to antidepressants. Then finally, less than ten years ago, came the diagnosis – fibromyalgia.

I realize now that my absences from work, all of those times when my body ached everywhere, like the start of a bad flu, were, in fact, fibro flares. And the entire time, I felt embarrassed and defensive because I was always sick, or aching, or exhausted, when to the rest of the world I seemed perfectly healthy.

Throughout all of this, I’ve learned that the best thing I can do is pace myself. Like someone with digestive problems, I have to avoid too much of anything, so I exercise, but can’t push too hard. I sit, but never for too long. I stay mentally engaged and active, but try to guard against too much stress. Move outside of moderation, and I risk a sudden episode of pain or brain fog. And though I miss earning a good wage, I’m hesitant to commit to anything that would prove too demanding. I don’t feel sorry for myself, because I am alive. Many dear friends have died too young, and they would gladly trade their illnesses for mine.

You could say that I’ve learned to live with it but there is one thing that never gets easier. It’s the lack of validation connected with this illness, just as with other invisible illnesses like MS or Lupus or Crohn’s. Our conditions don’t define us, but none of us wants to be made to feel less stoic than everyone else while we’re in pain, or when we have to curtail our activities to avoid a flare-up. In my case, it might even be nice if occasionally, someone else brought up the elephant in the room instead of pretending that fibromyalgia – or at least mine – doesn’t exist. Just sayin.’

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