I Have Fibromyalgia: It Doesn’t Have Me

it’s invisible

It took twenty years to be accurately diagnosed with Fibromyalgia.  I remember years ago someone saying that it isn’t a real thing, so they made up a diagnosis.  Clearly that person was extremely uneducated.  When we see someone with a visible disability or an obvious disadvantage, it tends to be easier to understand.  For those of us who have an invisible illness, there is definitely more judgement and misunderstanding.

My experience

For so many years I have hidden what I truly encounter.  I wish I could tell you why I’ve hidden it but I can’t.  The only thing I can come up with is that I’ve always been of the mindset that if I put something out there, it comes right back only in abundance.  I’m not the type to talk about negative things or blast social media when I’m feeling miserable.  No one likes to hear that.  Did you hear that? NO ONE LIKES TO HEAR THAT.  I personally feel that if I don’t tell my friends or family how I am truly feeling, then I am saving them from unneeded worries, and saving myself from the guilt of giving them said worries.  Diagnosing this monster has been a constant nightmare.  I’ve been told I have everything from cancer to Lupus to nothing at all.. that it’s imagined.  Okay, so I’m IMAGINING feeling like I got hit by a bus? I’m IMAGINING that my hips don’t want to support my body? I’m IMAGINING momentary bouts of forgetfulness?  Nope.  It’s just that doctors actually have an extremely difficult task of diagnosing this.  There are no clear cut symptoms and no two people have it identically.  We all probably have similar symptoms but it is different for everyone.  The actual definition of fibromyalgia is the body’s response to pain in the soft tissue.  I was diagnosed by a world renown Rheumatologist and researcher at the National Institute of Health (NIH) in Bethesda, MD.  Once I got the diagnosis I had such peace of mind but knew I was in for a rough ride.

I can wake up feeling absolutely glorious one day, wanting (and planning) to take over the world and then within a few short hours, feel like the world has taken over me.  There’s no way to predict it, there’s no way to fix it, and there’s no way to explain it.  I just feel miserable.  It feels like the flu has hit my entire body with one swift blow of a breeze.  It feels like little knives are constantly stabbing me in all my sensitive parts.  It feels like there’s a tiny person inside my chest using my heart and lungs as a speed bag.  It feels like any light source is a piece of sand in my eyeball.  Any noise, whether it be the sweet voices of my beautiful children, the calm, nurturing sound of my adoring husband’s voice, or the beautiful music I’d ordinarily love, is going to make my eardrums implode.  The soft touch of my babies’ hands, the playful jump on mommy’s back or the soft caress by my husband’s warm hands feels like I’m being slowly burned alive.

The very thought of explaining this to someone is exhausting because it takes energy to do so.  My emotions and my heart want so badly to be included in outings and fun events, but the body is always the first to RSVP with “no” because canceling something is even worse.  I want so badly to pick up my feet and go for a run but I have to calculate what is required of me for the next few days and determine if it’s worth the sacrifice.  When I have a good day, I usually end it knowing I’m going to “pay for it tomorrow” and without fail, I do.

Planning EVERYTHING whether it’s a party for the my kids, a meal for my family, or even a cup of coffee with a friend, takes a great deal of checks and balances.  My instinctive thought is, “if I say yes to this, how will it leave me feeling in a few hours? The kids will be home from school soon I better get home and rest up in order to be present for them.” This thought process leaves me saying no to most things that don’t involve my kids, because I refuse to give them the leftovers.  Because of that, maintaining friendships is a lot more difficult these days.  Once upon a time, I was the girl who was the first on the dance floor and the last one off.  I was the  ultimate yes girl, and the girl who would do anything and go anywhere.  Knowing that about myself and still being that girl on the inside can leave me feeling like I’m a shadow of what I once was.  I only feel that way when the fibro attacks my brain and nervous system and that gives way to anxiety and depression.  Fortunately, fibro does not give me depression.  I know the anxiety comes from caring way too much what people think.  I want so badly to be with the other moms and be able to hit the gym, go food shopping, run errands, plan vacations, and just be as present in “things” as I want to be.  Fibromyalgia, coupled with my diagnosis of LCAT Deficiency, a rare kidney disease, leave me having to choose and prioritize things that someone without chronic illness doesn’t have to.

Sometimes I feel like I can do better.  As a mom, as a wife, as a human being.  In fact, I KNOW I can, but I FEEL I can’t.  It’s not a matter of knowing my limits, as I am very well aware of where I’m limited. It’s a matter of having to always contemplate those limits.  Anyone with chronic illness will tell you they’re well aware of their limits.  Sure, not everyone accepts those limits, but eventually, we do.  The craziest part about all of this is that fibro is so common that 1 in 4 people have it.  ONE IN FOUR!  That means that if you’re at a dinner with friends and its a set of couples, one of you has this.  It’s most commonly found in women, but the guys can get it too.  There is also a genetic component.

 

Mindset

I truly believe that a positive attitude will help conquer anything.  But here is my truth about that.  Having a positive attitude does not mean I’m in denial.  It means I am choosing to have balance.  It means that even though I struggle with it, I have to allow myself to have a flareup.  I have to allow myself to not feel well.  Fighting it makes it worse.  This is why I plan events and parties and even vacations well in advance because I am fully aware that anything leading up to those things will have to take a backseat if I want to experience them.  I also have to be aware that after the event is over, it will take me days if not weeks to recover from it.  Sometimes it can be portrayed as I’m disappearing or introverting, but it’s only because I’m not the type to say, “hey there, I’m feeling like I got mowed down by a fleet of vikings with steel toe shoes on, so I’ll catch up with you in  few weeks, mmkay?” How do you actually explain that your entire body feels like one big bruise? It sounds ridiculous even to myself.

If you’re new to my site, or new to my life, welcome.  If you’re here and new to Fibro in any way, albeit you yourself having it or someone you know, please keep this all in mind.  If you were just diagnosed or think you have it, my best advise to you is to get to the point of accepting it.  I’ll be honest, saying “it could always be worse” will make you feel terrible.  That’s true to a degree and we fall into that pattern of thinking because we think we are being realistic and humble, but you know what you are actually saying with that? You are saying you aren’t validated for how you feel.  You are saying you don’t have it rough when you do.  Sure others are dying needlessly with other terrible illnesses, but what does that have to do with you? Nothing at all.

If you see me in my house without my lights on or see me wearing sunglasses indoors or even wearing noise cancellation headphones, this is why.  I look ridiculous, I know.  BUT I’M ALIVE! I have found tons and tons of alternative methods to help myself feel better, and I choose to ultimately start and end with my mind.  The mind is a powerful too you guys.  It is in line with the body.  Without the mind, the body wouldn’t be around, feel me?

I’ve tried chiropractic care.  For me, it causes flare ups.  For other sufferers, it can be very soothing.  Massage also sets me back a few days.  Because of this, I’ve discovered that for me personally, yoga and pilates do make me feel better.  You have to know your body.  You have to do what’s right for you.  Again, I could easily lay in bed all day.  I mean, even on a good day I can lay in bed all day.  That’s because I just love my bed.  We have an excellent relationship.

 

resting doesn’t help

No matter how early I go to bed, no matter how much I prepare myself for a good night’s rest, I do not get rested sleep.  Anyone with fibro with tell you their biggest complaints are insomnia and then day fatigue along with generalized “pain”.  I can sleep for twelve straight hours and feel like I haven’t slept for days.  The reason for that is because Fibro prevents the 3rd sleep cycle.  Then, there are days where I can function on six hours of sleep.  I will feel powerful.  I will feel ready to party.  Then, *if* I party, lol, you’ll never see me again.  Despite these truths, I still listen to my body.  I still rest when I have to.  I am a lucky one where I can work from home and make my own hours.  I’m also extremely lucky to have my husband who just understands me.  He needs no explanation.  There have been days where he has had to literally carry me.  As a person who prides herself on helping others and empowering others, that can be mortifying, but at the same time, it’s an object lesson in humility.

 

how you can help

Do you know someone who has this? Here are some facts for you.

  • As sufferers, we have guilt.  TONS AND TONS OF GUILT for various reasons.
  • We want to be checked on.
  • We want to say yes.
  • We want to be included.
  • We want to be normal.
  • We want sympathy, but
  • We don’t want sympathy.  It’s a weird place.
  • We want help under the guise that you want our company.  That works every time.
  • We are harder on ourselves than you need to be.
  • We know what’s happening but we may not admit it.
  • Invite our spouses out for fun without us, we can probably use the quiet.
  • Help us with our children but don’t tell us you’re helping us.  You want to spend time with our kids.
  • Don’t expect anything
  • Don’t expect anything in the mornings.
  • We are just like you, just in pain.

I will be making this a recurring series, and I feel compelled to document my journey through it.  I want you to know I am okay.  You will be too.

One thought on “I Have Fibromyalgia: It Doesn’t Have Me

  1. So sorry you have to deal with this. It’s remarkable to me what you accomplish despite what you are dealing with! Truly inspirational❤

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