Fibromyalgia: It's Not Just About the Pain

I had a thought once, but I lost it.  The Fibro fog came in and stole them all away.  Fibromyalgia is cruel like that.  People assume that the pain is all we have to worry about it.  I would rather be in intense pain 24/7 with no relief than to deal with the myriad of other Fibromyalgia symptoms.  I could stand to live without the blurry vision and the ringing in my ears or how about the dry itchy skin and the nose bleeds. It would be nice if my hair wouldn’t fall out or if I didn’t have bright red cheeks.  The constant dry mouth and yes of course the Fibro fog are two more of the symptoms of Fibromyalgia that push me closer to the edge.  The list goes on and on and even the pain can’t be described as just pain.  It’s more like burning, aching, stabbing and throbbing.  So next time you meet someone with Fibromyalgia take the time to look inside of them.  Remember that Fibromyalgia is real and that the pain, most of the time, is the least of our worries.  Our lives are changing so quickly and it’s hard to keep up.  Most of the time we are able to be happy, but sometimes we just want to die.  We spend a lot of time alone, not because we want to, but because most of the time it’s just easier. We don’t try to be difficult.  Our illness is just difficult to deal with.  It’s lonely.  It’s frustrating.  It’s our new life whether we like it or not.

Stop "Complaining"!

How many times have you been told to stop complaining while talking about your Fibromyalgia symptoms?  I’ve personally lost count.  This is something that I will never get use to and it’s something that breaks my heart a little more every day. 

We wake up with pain and exhaustion and we go to sleep with pain and exhaustion.  We are so confused by our illness that we talk about it a lot.  This isn’t complaining people.  We are trying to understand what’s going on inside of us and sometime’s talking about it is the only way to make some sense of it. 

I get angry when people tell me that it’s just crazy and they don’t understand it.  How the hell do they think we feel?  That’s why it’s constantly on our minds.  Every day it seems like something else malfunctions and it’s scary and we feel alone. 

If you want to call what we do complaining then so be it, but I hope you never have to be in the place we’re in right now. It’s easy to say oh just forget about it and get on with your lives.  Every day I wish I could and I know everyone else with Fibromyalgia or any other chronic illness feels the same way.  Don’t judge us.  Don’t condemn us.  We didn’t do anything wrong. We’re sick and we just need everyone in our lives to accept that because it’s not going to go away. We don't want to be sick, but we are and we're dealing with it the best we can.