6,909 distinct languages.

There were six thousand nine hundred and nine classified distinct languages in the world as of 2009.

If we add to that body language, the various dialects, conlangs (ASL, Klingon, Na’vi, and Tolkien’s many languages), jargon (legal, medical, craft, etc.) and internet speech (inclusive of emoticons and text-speak), it is possible to see that human beings have spent a great deal of time and effort attempting to communicate with one another.

Still, we manage, oftentimes enough, not to understand each other.

Even though we hardly need another language, I propose to add another “speak” to the mix:  Fibromyalgia|Speak or FMSpeak for short.

Why?  Because I realize that there is some clarification needed for certain expressions that I use when discussing my well-being.  So, I thought I would share some of my entries here.   My hope is that it will be useful (and perhaps amusing) for you.  Here we go.

The first 5 entries: 

When I say…

• “I am tired.”

I mean…

• “My body feels as though I do not know how I could possibly move it another inch.  My brain isn’t forming thoughts clearly.  My eyes are not sure when the last time they closed or opened themselves was.  Even if I had/have the opportunity to sleep, I can’t sleep.  I am too exhausted to move, sleep, think, talk, cry, laugh, care, be, feel, eat, drink, deal, know, want, need…Please, don’t ask me anything else about my health, because if you do, then I just might fall apart.”

When I say…

• “I am not well.”

I mean…

• “Every movement makes me nauseous, tired, hurt, cry, angry, desperate, and scared of what will come next.  Every thought is no thought, and I’ve probably forgotten your name or what we were last talking about when we met.  Every minute feels like I am being pierced by hot needles all over (or, if I am lucky, just some parts of my body).  My brain is splitting apart and I am sensitive to light, sound, smell, motion.  Please, don’t ask me anything else, because it will be too much and I am barely holding myself together.  I want to cry and sometimes I will…if you keep asking me if I am okay.  I am not, and you already know that.”

When I say…

• “I am sick and tired of being sick and tired.”

I am mean…

• “Why me? I thought I was feeling better.  Why won’t this go away?  Why can’t I get it (medication, work, relationships) right–why does my illness get in the way?  Please, don’t ask my anything else, because I won’t be able to deal.  (See last two entries).”

When I say…

• “No, I can’t.”

I mean…

• “No, I can’t, physically and/or psychologically. What you are asking of me is counterproductive to keeping myself well. The conditions are inauspicious.  It’s winter.  I haven’t slept in four days (literally). It’s been raining and dark for days.  Walking is a challenge–smiling, too.  I don’t want to be around others when I am like this.  I don’t want to bring others down with my illness…and you can’t bring me up, because you can’t make me better.  It’s impossible at the moment.  I mean ‘no’ at this time, this moment, but who knows about the future.  So, please, ask me again, even though I may say ‘No, I can’t.’ Okay?”

When I say…

• “Yes, I can.”

I mean…

• “Yes, I would like to and think I will be able to, if the conditions are auspicious, i.e. the weather is good, my stress level is low, the season is right, and I have actually slept.  I am really happy that you asked me and I want to do it–really, I do.  Please, believe in me.  Please, give me time to do my best.  Please, help me to challenge myself to do more than I think is possible.”

And so there we have it.  A bit tongue-in-cheek, but quite true for many, if not all, people who have fibromyalgia (see video below).  At some point or another, we have had thoughts like these–And I am sure that most people have had thoughts/feelings/experiences like these…the thing is that we just happen to have them more often. 🙂

I hope that these entries will help to spread more awareness and give some insight into what it feels like to have fibromyalgia.  It’s no walk in the park. 😉

People with fibromyalgia, we are strong and we show that every day.  Regardless of who we are, where we are, what we do, how we live; we are trying…and in trying, we survive and eventually thrive.

Below, I leave you with “Voices of Fibromyalgia”, the video that inspired this post.  Many thanks to its creator!

Until Next Time,

Diedré