“I Breathed Today”

Posted: November 5th, 2014 | Author: | Filed under: Chronic Fatigue, Fibromyalgia, invisible illness | Tags: , , | Comments Off

Living with an invisible illness can sometimes give cause for some serious head trips.  On the outside you may look like a picture of vitality and health. But on the inside, your entire nervous system can be screaming, as if it was set ablaze with Napalm.

00 sometimes its okay if you must breathThe head trips aren’t just from other people assuming that you’re perfectly fine. That you’re making up lame excuses as to why you aren’t going to do XYZ. Or, that you’ve swiped your grandma’s handicapped parking placard, because you’re just a lazy louse.

Speaking as someone who has dealt with full-blown Fibromyalgia and Chronic Fatigue for over 15 years now — I could share countless negative stories about how misunderstood and mistreated people with invisible illness are usually treated. Often by well-intended people who think they’re helping by pushing you to push yourself. But more often by strangers who make visual snap judgements and get downright mean towards you.

But actually, some of the biggest head trips are internal, from self-doubt … “Just push yourself a little harder. You’re going to hurt anyway, might as well make it count, right?” This is what I go through on a daily basis. But I’ve been actively having to push extra hard for the past four days now while experiencing a very serious Fibro flareup.

I’ve decided to start writing about my invisible illness experiences in an attempt to possibly inspire others who wrangle with one too. You’re not alone! And, an even loftier goal, is to possibly help bring awareness to those who don’t have to live with one. In other words, for sure I’m not writing this article for sympathy. Typically, I keep pretty quite about my daily invisible illness struggles, especially so during flareups. But if we don’t share information, how do we all learn?

Sunday, all day the winds blew steady and were sometimes gusting up to 45+ mph. Often when the barometric pressure varies wildly like that my Fibro and/or Chronic Fatigue will flareup beyond my being able to gloss over it with a good attitude.

Early Sunday morning I regrettably had to bow out of a family football feast. My family did their best to be accommodating for me to be there — even offering for me to spend the night. But, I find it highly embarrassing to be in the midst of people while I appear like listless human lump.

A head trip of self doubt set in. Should I have pushed myself to go? Was I not being tough enough? It turned out I had made the right decision with staying home. By game half-time my energy gave out. I literally couldn’t stay awake. I even had to take my socks off because they were literally giving cause for serious pain felt throughout my entire body.

Id go out of my way youre okaySince then, all week long, I’ve done my best to muscle my way through this flareup. Take my pain meds, ignore self-doubt and keep pushing. This morning I attempted to keep moving forward, to go spend some time with my folks and get in a ride on my motorcycle.

I was all dressed to go. Double layered everything, pants, shirts, socks. All I needed to do was empty the trash before heading out the door. I grabbed the trash bag with my right hand, it hurt but I did my best to ignore the intense pain shooting through every single finger.

Halfway to the dumpster, smack in the middle of the street, my hand gave out. The pain was so intense my fingers literally couldn’t hold onto the trash bag anymore. The full bag thumped onto the double yellow line as my body involuntarily winced.

The best I can figure is that my face was filled with shock and horrific pain. A neighbor saw all of this happen and rushed to my aid. He looked at me in disbelief while asking if he could help by taking the bag for me.

Doing my best to remain self sufficient, I grabbed the bag. Intense pain shot through all of my fingers again, my hand and arm self-protectively recoiled from the bag. Too-independent-me grabbed for the bag with my left hand. That wasn’t much better, but using both hands I got the trash bag into the dumpster. In hindsight I should have just taken my neighbor up on his sweet offer.

The neighbor’s kind eyes were still looking at me in disbelief, like he couldn’t believe I’d be having such extreme difficulty emptying my trash. I caught my breath, smiled at him and said, “Thank you so much for offering to help. Seeing someone with an invisible illness struggle is often hard to understand. We look perfectly healthy, but usually we’re not. I’ve  been in a bad flareup for several days. Guess it finally got the better of me. But thank you for your offer of kindness.”

Happiness loving what you have butterfliesHe beamed a huge smile and said, “Allow me to quote you, “if we behave like a community, we’ll survive as a community.” His concern and smile refueled my hope. His kindness mattered.

I thanked him again and called my folks to say I wasn’t coming over, yet again. If my right hand can’t keep a hold of a trash bag, it wouldn’t be safe to try and keep a hold of the throttle and front brake of a motorcycle.

For this flareup, there is no more self-doubt head trips … Now there’s just a head trip of trying to coast through the pain of my entire nervous system finding no relief from any available medicines. If I was dumb I’d probably drink alcohol or do hard drugs, in an attempt to gain relief by numbing out. But, I’m not dumb, so, I’ll rise above it by meditating, breathing, sharing my truth here, taking short walks and riding this flareup out.

These are the type of days that I actively remind myself to focus on blessings. There truly is so much to be grateful for … I got to take a hot shower, sip on cardamom chai tea, munch on organic carrots dunked in ranch dressing. I got to share love with people!

I may not have accomplished all that much today, but I breathed. I may be in horrific pain, but I’m happy.

So, after a really bad flareup like this one, I make a special point to actively remember — Whenever possible, be kind, because you never know what someone else is going through.

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