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How I've Restarted My Life After Being Diagnosed With Fibromyalgia

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I sat with a friend yesterday catching up on life as we hadn’t seen each other in a while. I told her about the long road to a diagnosis and the battles I faced while fighting for answers.

After validating that I’m in a very terrible situation (because the backstory left her fairly speechless), she then asked me, “How do you plan on regaining your life?”

Though slightly taken aback by the question, it didn’t take long for an honest, crisp, clear, fibro fog-free answer:

“I honestly feel like there’s nothing to regain. All I’ve known for the past 10 plus years of my life is pain, sadness and exhaustion. The only difference is now there’s a name for it. It’s not like I was this perfectly healthy 20-something-year-old who suddenly fell ill and hasn’t been the same since. So there’s nothing to regain. All I can do is try to figure out how to move forward and live life the best way I can knowing these illnesses are going to get worse over time.”

It’s only been about four months since my official diagnoses, but I’ve already taken steps in reconstructing and reprioritizing my life as I see fit. I know as time progresses, new perspectives will arise and I will have to add to this list. But here are things that changed for me after finally getting diagnosed.

I have zero tolerance for negativity. Being sick all the time is extremely difficult in and of itself. Why would I accept any form of negativity? Good vibes only, over here! I run from negative people, negative situations and anything that drags me down. Life is too short… and painful… I literally have no time.

My honesty level has risen. The filter has been partially removed. No, I’m not a jerk, I’m just very honest about how I feel in regards to sickness. If I’m having a bad pain day or I’m in a flare, I make it known (especially at work, but even more so with family). When people comment on how bad or tired I look, I’ll tell them about the three hours of sleep I got the night before or how my pain level is at seven headed for a 10 and I’m contemplating taking a trip to the ER. I used to hide how I feel for a number of reasons. But, now, what’s the point? Nope, don’t feel well… but here we are. I’ve suffered in silence long enough. Time to speak up.

I’m learning as much as I can about my illnesses. Along this journey, doctors have told me not to research my illnesses or symptoms. You mean to tell me I’m not supposed to be knowledgeable about the ailments that will plague me for the rest of my life? That’s not going to work! I’m trying to educate myself about fibromyalgia and RA as much as I possibly can. I’ve been looking at common symptoms as well as symptoms that are not as common. I’ve been looking at different treatment options and different ways to manage pain. I’m still trying to figure out (or predict in some way) what causes my flares or when they will come. Since so many other issues are brought forth by fibromyalgia, I make sure to keep track of my symptoms. If something seems fairly “new,” I make an appointment with my doctor to either confirm or deny that fibro is the culprit. I write questions, then I ask those questions when I go to my appointments in hopes to gain clarity.

I put myself first and continue to advocate for myself. I’ve spent most of my life putting myself last – serving myself last or, sometimes, not at all. Now I must place myself first. I have my own back. If it doesn’t benefit me, I most likely won’t participate. And there is absolutely no more running myself ragged for others. I’m learning to say “no” and leave it at that. Being “selfish” was never one of my strong attributes… I’m working on it.

I fought for seven months for a diagnosis; and I was symptomatic the entire time. Nothing hurt like getting those “you’re silly” looks and the heartless, unapologetic “sorry, I can’t help you” statements from doctors. I had to fight for myself. I mean really fight. So now it’s all about me. If a doctor doesn’t work, on to the next until I find one that does! No one will fight for me, but me.

I would love to hear what you are doing to regain your life after diagnosis – or, if you’re like me, just trying to figure out how to restart your life. Either way, I would love the feedback! Keep fighting, peeps!

This post originally appeared on The Antisocial Butterfly.

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Thinkstock photo via Merlas.

Originally published: November 16, 2017
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