I Can't Always Be Strong

A couple days ago I was in a really bad place.  It's been a while actually since I had the thoughts that I did that day.  We all know how it feels when the pain is hurting way too much and for way too long.  It changes us.  It changes the way we think and the way we act.  It changes everything.  When I was in a dark place that day I wrote this.  It's not the way I feel all the time, but I can't always be strong.

It’s so hard to keep fighting when it all seems to be in vain.  My body’s broken and feels as if it’s already been slain.  Why am I still here, trapped behind this slamming door?  There’s nothing left for me to do here anymore.  I just want to run away.  I have to run away from the pain, but no matter how hard I try it follows me everywhere.  I feel there’s nothing more for me to gain.  It won’t be long before I go insane. This monster exists in my reality and follows me into my dreams. All I ask for is a moment of peace, but I know that I’ll never know what it feels like to feel no pain.  I wish I could remember what it felt like to be free.  I wish I could remember what it felt like just to be me.  The pain is relentless…I live it, breathe it and dream it. I’m trapped in a broken body-a prisoner, with no hope of release.

This might eventually turn into something a little more put together.  This is just an extreme rough draft of my thoughts and feelings.  I hope everyone is having a good day despite the pain. *Gentle Hugs*

My Journey with Fibromyalgia

This is my journey and no one else’s.  Those who choose to walk beside me, I will embrace.  Those who try to dictate my life, I will discard.  No one fully understands what my life has become and most will never care enough to find out.  No one knows my story because I’ve never told it. I’ve never told it because no one has ever asked to hear it.

I’ve had the symptoms of an invisible illness since I was ten years old.  It sounds kind of silly, but it’s true.  You can look at me and it appears that nothing is wrong.  I appear to be a healthy woman with a few extra pounds.  There is no way for you to imagine the degree of pain I’m in every minute of every day.  I laugh, I joke and for the most part I’m happy, but all the while this invisible illness is raging on inside of me.

On a really bad there are visible signs, but chances are you won’t notice unless you pay very close attention.  On these days I walk a lot slower, I can’t bend over and most likely I won’t have the energy to take a shower.  Some will notice this and assume I’m just being lazy.  They have no idea what it feels like to wake up in the morning feeling more exhausted than the night before.

My eyes are blood shot, my vision is blurred and my words are slurred.  Instead of asking, most assume I’m drunk or high, but I’m just in a flare and the symptoms of my invisible illness are ten times worse than they usually are.  I thought it couldn’t get any worse than this, but I was so wrong because it was after this point that I lost abilities that made me who I wanted to be. Read More...

Good Morning! Is it Really? Ummm Sure Why Not?!

I just woke up and I’m laying here because my knees hurt so bad that I’m scared to get up.  I hate mornings like this.  I never know if my legs are going to be strong enough to keep me from falling.  I never know if they’re going to work like they’re supposed to.  I just never know and that’s enough to drive me completely crazy if I let it.  I can’t count the times that I’ve sat on the side of the bed praying for enough strength to be able to make it to the bathroom and I can’t count the times that I’ve gotten up only to fall right back down and I also can’t count the times that I’ve gotten dizzy and ran straight into the wall.

Living with any chronic illness is full of so many uncertainties, frustration and confusion.  The only way I’ve learned to cope with all of this is to laugh at it.  Laughing feels so much better than crying and it’s not that I don’t take being sick seriously, because you have to.  It’s just that if I spend every day worrying about what’s going to happen to me, or crying because I couldn’t function the way I needed to I would be a totally miserable person and that’s just not me.  How can I successfully survive this illness if I lose who I am in the process?  I can’t.

Everyone deals with being sick in their own ways and there’s nothing wrong with that as long as they are successfully dealing with it.  Our lives may look insufficient to you, but we’re happy just to be alive.  Anything we’re able to do past that is a bonus.

I hope everyone is having an awesome day. *Gentle Hugs*

Those Who Don't Believe...

I have Fibromyalgia.  Of course that’s no surprise to those of you who actually read my insane ramblings, but to some members of my family it’s the biggest joke they have ever heard.  They seem to think that I’m just a depressed, lazy chick who is scared of the world and if I would just push myself then I would magically be cured.  Now why didn’t I think of that?  I’ve had chronic pain and a whole host of other symptoms since I was 10 and to think it can all be cured by just pushing myself a little harder.

If this sounds angry, I apologize because I try really hard not to let these kind of things get to me, but sometimes I just need to let things out so that I can let them go.  Those people who don’t think Fibromyalgia is real or those that think it’s not that bad are just ignorant.  I know that’s a harsh word, but damn our battle is hard enough without having to hear this retarded crap all the time.

The thing I hate the most is being called lazy.  Like I’ve said before in other posts, I wish I was lazy because then I wouldn’t care when I have to refrain from a “normal” life.  I could be happy sitting on my ass all day.  I hate that I can’t work a regular job.  I hate that I can’t hang out with my friends near as much as I used to and I hate that when I do I have to worry about how long I’m going to be gone, if I’m wearing comfortable clothes and which meds I need to take with me.  I hate the days I can’t drive.  I hate barely having enough energy to dress myself after I take a shower.  I hate being sick, but most of all I hate being ridiculed because I’m sick.

No one chooses to be sick and no one chooses to give up a life that they were perfectly happy with in return for a lifetime of pain, extreme fatigue, nausea, lack of sleep, sensitivities to everything, muscle spasms and the list goes on and on.

Someday the world is going to know what Fibromyalgia is and how bad it is, but the relationships with some people in my life will be too damaged to repair.  If they can’t support me now, then I won’t want their support when they finally get the proof they need.

I’m a fighter and I’m a survivor and it’s because I do have people in my life who understand that I’m sick and support me a 100%.  I’m so thankful for them, because if it wasn’t for them and my faith I wouldn’t be here.  I would have given up before I even got my diagnosis.  I’m glad I didn’t give up, because I still have a lot of life to live even though it’s not the life some people think I should be living.

That’s just my thought for the night.  Hope everyone is as pain-free as possible.

Total Fibro Weirdness

Chronic illnesses always tend to throw out little surprises along the way and Fibromyalgia is no different.  It always seems that when I feel I have things under control and have grasped some understanding of what’s going on something totally weird pops up out of nowhere. 

It was a few years ago when I first experienced the red burning skin.  The first time it happened on my left upper arm.  The second time was on my face and now this morning I woke up with it on my left arm and face.  It’s absolutely horrible.  If you have experienced this you know that it’s like a very bad sunburn and you start resembling a tomato.

I realized today that it seems to occur when I’m extremely stressed.  Have any of you experienced this?  It gets to the point where I want to pack myself in ice.  The burning can get extremely intense and the redness is just so weird.  Fibromyalgia is just weird.  I would end up with an illness that makes absolutely no sense whatsoever. 

I hope everyone is as pain free as possible.  JGentle hugs J

I'm Not Crazy...

I’ve come to the conclusion that no matter how much research proves Fibromyalgia is a real medical condition that there are some people who will still refuse to believe it.  I will never understand this, but everyone has the right to believe what they want to believe.  This is my life though, and it’s my choice on whether or not to associate myself with these kinds of people and my choice is to disassociate from them.  I can’t learn to cope when there are so many people in my life telling me that all I need is a psychiatrist and I’ll be just fine.

Over the past couple of years I have let people bring me down, break my heart and make me feel absolutely crazy.  I refuse to let that continue.  If I have to get mean, even if I have to yell and push people away, I will stand up for myself.  Those people I push away obviously don’t have a place in my life anyway. People might as well have a reason to call me crazy.  I have kept quiet for so long and I’ve spent too many nights crying myself to sleep.  If I don’t learn to be stronger for myself then I won’t be able to survive this monster.

I hope everyone is having a good day.  *Gentle Hugs*  

Don't Give Up on Us

Accept the fact that I am sick and I will show you that I’m still capable of many things despite my illness.  Ignore my illness and treat me as if I’m simply crazy or lazy and I will disappoint you countless times.  In the lives of those who are chronically sick acceptance and understanding means hope for a better tomorrow. We’re not asking for you to throw us a pity party and we’re not looking to be saved.  All we want is to not be shunned for having an illness that we have no control over.  No one in their right mind would ask to have a chronic illness especially an invisible one like Fibromyalgia, Chronic Fatigue Syndrome, ME or Lupus.  The only thing worse than having an incurable disease is having one that no one believes is real.  Not to mention one that has no effective treatment.  We didn’t choose these lives, but it’s what we were given and we’re learning to accept our fate and live our lives as best as we can.  Our goal is to keep living…keep surviving even though we’re faced with the thoughts of wanting to die on a regular basis. We don’t want to give up, so please don’t give up on us.