I Have Fibromyalgia…And I’m More Competent Than Ever!

I’ve been competent for as long as I can remember.

And I’ve been seen as competent for as long as I can remember.

And I’m still seen as competent…in every area of my life…EXCEPT ONE…it seems…

That I have fibromyalgia.

So let me explain.

I was competent enough to know when I had broken bones. I was competent enough to know when I should seek consultations resulting in advised surgery for a muscle hernia…for required surgery for an ovarian cyst…for surgery to diagnose‎ severe chronic endometriosis…and recommended surgery to remove it. I was competent enough to guide my three sons and my husband through navigating countless ‎health situations including some serious medical crises for well over three decades.

For competent is defined as “having the necessary ability, knowledge, or skill to do something successfully” and I’ve had the ability, knowledge and skill to make good judgement calls, successfully, on ALL these health and medical situations for well over three decades now.

So I am left wondering…why then, when it comes to my fibromyalgia…does it seem I suddenly become incompetent, according to others…a woman seeking attention…making up things…unable to tell what’s real and what’s not, regarding my health?

Why then, am I seen as not competent enough NOW, to know that there is seriously something wrong with me physically, in the way that my brain and/or body is functioning? Of course, I can’t know the cause, or where exactly it originates, but I KNOW SOMETHING’S DIFFERENT…SOMETHING’S WRONG. I knew it all those other times with all those other health situations that I’ve made the right call on for myself and my family (and continue to make the right calls on!) …and I know it now. I knew it sixteen years ago with my first vague fibromyalgia symptoms and I’ve known it every day for sixteen years since…AND I STILL KNOW IT NOW.

But it seems there’s a stigma attached to fibromyalgia; it seems the question “Is fibromyalgia real?” hangs over me (and everyone else suffering from it) in the eyes of many others. And honestly, it just gets too ridiculous for me to even dignify it with a response anymore!

But I see it. I see it in the changing expression on the face of someone that I venture to offer this private information about myself to. I see it when a health care professional suddenly backs off taking my health concern seriously when I disclose that I have fibromyalgia. I see it when a paramedic gives a knowing glance at their partner upon hearing that I have fibromyalgia.

I see it.

And I can’t lie. It is often frustrating, sometimes infuriating, but most of all…insulting…extremely insulting.

Because…I’m still as competent as I’ve EVER been.

After sixteen years of what I’ve been through…and endured…persevering through battling fibromyalgia, day in, day out…no, I’m MORE competent than ever. Because, as a matter of fact, it takes incredible competence to master life with fibromyalgia!

Yes, it takes incredible competence to master life with fibromyalgia.

I’ve had to pull out all the stops…use all the ability, knowledge, and skill I have…to figure out how to successfully function in my every day life…every hour of every day for sixteen years now. And when I’m not so successful at times, and I feel I’m totally at a loss (done!), as inevitably happens with the excruciatingly difficult illness that is fibromyalgia, then I need to dig deeper and discover some new reserve of even more competence to pull myself back up again.

I’ve had to slowly and painstakingly, on my own, through extraordinarily slow trial and error, hone my ability to figure out how fibromyalgia works…what helps it and what hurts it…by constantly assessing the symptoms and their potential causes…while at the same time, continually seeking out and gaining the knowledge to deal with these multitude of difficult, ever changing and ambiguous symptoms as they appear…daily…even hourly…still, all on my own.

I mean, the working knowledge I now have about all sorts of issues…things that can affect experiencing pain, ways to battle fatigue, sleep issues (especially restorative sleep), benefits of exercise (including many less obvious ones), tips for a healthy diet (including many specific targeted foods), eating for IBS, the tremendous effects of stress on us, fighting chronic illness without ongoing medications, battling depression, harnessing our mental power in many ways (and the value of mental power in battling illness!), dealing with vertigo, numbness and a whole host of other unlimited number of ever changing symptoms.

Now, I don’t pretend to be an expert on any of these, far from it, but it dawns on me that I have built up a wealth of information from fighting fibromyalgia for sixteen years now, when I’m at a social event and I hear “regular” people start talking about what to do about their aches and pains or being unable to sleep, tired and overloaded, or trying to discipline themselves to eat healthier, exercise, deal with IBS, deal with stress, vertigo…etc. etc…and when I wish to, I can certainly competently add to the conversation. Having fibromyalgia over the last sixteen years, I’ve tackled all of these (plus more)!

So yes, I feel more competent than ever!

It’s unbelievable how skilled one needs to become to try to get anything at all done in the face of almost constant crushing fatigue while experiencing any combination of a whole myriad of downright scary to uncomfortable or annoying symptoms.

I need to be ON MY GAME more than ever; I need to be SUPER competent at walking the tightrope wire of managing fibromyalgia. For example, I can’t afford more than half a glass of wine with dinner, or good chance I’d be fast asleep on the couch all evening instead of helping my kids with something or getting work or chores done for the next day. But I can’t have a coffee either, for I may not sleep a wink all night, possibly setting off a vicious circle of fibromyalgia symptoms, (a flare), that could last days, weeks, or even quite possibly months.  I need to persist at exercise four to five early mornings a week to help manage my symptoms and help keep me positive (holding off depression), even though pretty much every morning my body aches all over and feels totally immoveable, “the block” (as best I can describe it), from constant chronic fatigue.

Yes, if it’s not competence…at so many things…to have the ability to keep getting up…and dragging myself through pretty much everything…day after day, year after year, even decade after decade‎…while walking this fibromyalgia tightrope wire…to continue to accomplish what I need and want to do in life…I don’t know what it is.

And maybe the most important ability I’ve had to develop is the ability to keep my MENTAL game on…as much of the time as I can…made especially difficult in the face of “fibro fog” and chronic fatigue…because I’ve learned that I need to stay focused and disciplined so I am able to keep doing everything that helps me to function (exercise, good diet and good sleep) while also trying to stay positive to help reduce stress, which I’ve slowly realized to be the major trigger of my symptoms.

So I’ve learned all sorts of ways to keep my mental game on…I’ve learned that I can change what I think and that I become what I say.  I’ve learned to “minimize it” (fibromyalgia), to live in “deliberate denial”, and to “fake it ‘til I make it”, all of which play parts in helping to keep me afloat.

And I’ve certainly become more competent than ever to navigate my health care now, because so many of my fibromyalgia symptoms can be symptoms of other serious and ominous ailments too. I need to be skilled and knowledgeable to make the right call of when to seek medical aid and then I need to have the ability to convey my health situation in a way that I am taken seriously by the health practitioners whom I depend on (for I have fibromyalgia).

‎So yes, I’ve had to use and develop MORE SKILLS, ABILITY and KNOWLEDGE these last sixteen years with fibromyalgia than ever before.

No, don’t look to me for incompetence…MY competence is fairly intact.

And honestly, knowing that, is enough for me.

I learned a long time ago that life is too short. I just have no room in me for holding onto any negative stuff. Period. That’s not who I want to be. And it feels so much lighter to just let it go. Gone. I need to lift myself above it, not get invested in things I can’t control (that’s a recipe for stress), stay positive, deal in things I CAN control.

I can’t control all that ignorance about fibromyalgia, I need to keep my focus on my own mental game, my own positiveness and “what I know IS real”. I won’t allow others to shake my confidence; I have a much graver, more daunting battle to fight, than fighting them.

So I keep and harness my power…I don’t let it seep out in negative emotions brought on by the misinformed ignorance of others. No, I won’t be frustrated, infuriated or insulted anymore. Instead, I CAN change how I think about them…instead of frustrated, maybe I’ll feel sorry for them for their ignorance, and small mindedness in some cases. It’s (really) their problem, not mine.

I can’t control how others think or what they do or what they say. But I CAN choose how I think and how I conduct myself and what I do with my life.

And what I know is real is I CAN continue to be a competent steady advocate for myself and my fibromyalgia, and in doing so…an advocate for all of those with fibromyalgia.

Each one of us with fibromyalgia, if we stand tall, if we continue to advocate for ourselves, we are advocating for each other as well…and I believe we will stand the test of time.

We have to…we aren’t going anywhere.

 

 

 

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