Help Me Fight this Battle or Get the Hell Out of My Way!

I spent another hour of my life trying to explain why you can’t compare two people with Fibromyalgia.  I don’t know why I waste my time.  I hate when someone tells me that so-and-so has Fibromyalgia and they work and they do this and they do that.  My first question is…How long have they had it?  My second is…What medications are they on?  If they can answer the questions then I tell them my story and why I’m different from that person or how I used to be that person a few years ago.  If they can’t answer the questions then I usually just say we’re all different and we all react differently to the treatments.

The last thing I thought I would be doing when I finally got diagnosed was defending the fact that I’m sick.  It’s ridiculous, but yet we face it every day.  I was thinking about it today and I started wondering how many of the Fibromyalgia-related suicides could have been prevented with just a little more understanding and support.  I’m to the point now where I’m saying either help me fight this battle or get the hell out of my way.  I don’t have the time or the patience for ignorance anymore.  I’m sick.  There’s no need to discuss it.  It is what it is.  Until you can walk in my shoes, you can’t judge my capability so don’t pretend you have me figured out because I assure you that you never will.

I hope everyone is having an awesome night/day despite the pain and all the other evil symptoms.  Gentle hugs and lots of love!

Is it Monday?

It has been a Monday on a Thursday all day today.  If I could get by with it I would never go to another doctor for the rest of my life.  I’ve been working on an application so I can get assistance at a clinic and I went today to finish everything and set up an appointment and I get there and I’m told they lost my application.  Now I have to wait till Monday for the girl who normally does all that paperwork to get back.  It’s really not a huge deal but it pissed me off to the point of tears for the simple fact that it took a lot of energy that I haven’t had lately to get dressed and make myself look good enough to leave the house and on top of the Fibro I have a severely sprained ankle that is refusing to heal.  It just took a lot of effort and to do it all for nothing made me angry.

People who aren’t sick hear things like what I just said and their first thought is oh my god can she get any more dramatic.  I know because I used to be that person.  I was already sick but I didn’t know what I had or the impact it was going to have on my life.  My aunt has Lupus and I thought she just used it as an excuse to get out of doing things.  Now that I know exactly what she’s going through I feel horrible for every thought and every comment I made about it.  I was one of the mean people that I battle against every day now.  It’s so easy to judge someone else instead of looking at your own faults and limitations.  I guess it’s just human nature, but it’s something that everyone needs to work on a little harder.

Well that’s just my ramblings for the day.  I’m going to continue sitting here with the heating pad on my back and the icepack on my foot wondering at exactly what point did I turn into an 80 year old.  I hope everyone is having an awesome day/night.  *Gentle Hugs and Lots of Love*

Pain!

The pain is horrible tonight.  It’s been pretty bad for the last couple of days and tonight it’s quickly becoming unbearable.  It still kills me every day that I can’t remember what it feels like to not be in pain.  If I would have known at 9 years old that my world was about to change forever, I would have done so much more.  I guess that’s pretty much everyone else’s story too.  At 10 years old my whole world turned upside down.  I went to bed one night being a healthy and extremely active kid and seemingly woke up with pain and frustration.  I really thought it was just the pain for a long time, but looking back now I also had horrible insomnia and anxiety.  It’s pretty obvious why pain, insomnia and anxiety travel together.  When you put them all in a 10 year old, they become a nightmare.  That’s a nightmare I’m still waiting to wake up from 22 years later.

It’s life-changing to the least, but regardless this is still my life and I’m going to continue living it the best way I know how.  The first time I typed the last sentence I left out two words. I’m doing that more and more.  Maybe I need to stop writing when I’m in a flare and the fibro fog is bad.  Don’t get me started on fibro fog.  The last few days I have felt absolutely crazy.  It’s frustrating!  I left out another word.  I should at least get credit for catching it, but it makes me wonder how many times I don’t catch it.  Oh well that’s a whole different story.  I’ll get into that when I can actually think and have a memory span longer than a goldfish.

I hope everyone had an awesome day or night depending on where you’re at.  Gentle hugs and lots of love.

The Insanity of Fibro

I had a pretty good day, but the pain is getting pretty bad now.  I’m in bed packed in pillows with the heating pad at the moment.  My spine feels like it’s on fire and it’s impossible to get comfortable with pain like that.  I’m having muscle spasms just about everywhere and those are never fun…except I still get a kick out of the muscle spasms in my boobs because I’m a weirdo like that.  I have to find a way to laugh at this insanity so it doesn’t break me down.  Laughter is good…especially on the really bad days.

I don’t talk about the specific things I’m going through very often because I feel like I’m complaining and that makes me feel weak.  I already have a weak body so it’s important to me to have a strong mind because that’s what keeps me here.  It’s literally a matter of life or death.  I shelter myself from the world a lot because I have to protect my strength.  I can’t handle drama, excessive sadness or anything like that.  People think I’m rude and that I don’t like to socialize.  It’s not that.  If I’m already feeling weak inside then I can’t risk losing what strength I have left. 

It takes a lot of strength to handle the pain and all the other insane symptoms of Fibro.  That’s how it is with any chronic illness, but some people don’t understand that because they’ve never had to deal with it.  It’s easier for them to judge and make false accusations than to try and understand what it’s like living in a world full of unwanted limitations.  We can’t change how people view us.  All we can do is be who we’re meant to be and live our lives the best way we know how to. 

I hope everyone is having an awesome day despite the insanity of Fibro.  Gentle hugs and lots of love!

I Hate Fibromyalgia!

Considering I just put myself and my feelings totally out there on my personal blog I decided to do the same thing here.  I hate being sick and I hate Fibromyalgia!  It is the stupidest, most retarded illness there ever was.  It makes absolutely no sense and then on top of that we get called crazy because we have it.  Most of us probably are crazy as hell, but it’s because we have been dealing with the insanity of our illness for way too long.

I get angry and I really try not to, but sometimes it’s unavoidable.  I know that this could be so much worse, but at night when the pain is really bad it does feel like the worst thing in the world.  It’s scary and lonely and that’s when all the emotion comes out.  I’ve prayed to die so many times and when you get to that point it changes you forever.  A few years ago I didn’t understand why so many of us give up and commit suicide.  I was one of those idiots who said “it’s not that bad”.  One night I found out why and now I’m reminded every day.  It’s bad.  There’s no other explanation needed…it’s bad…end of story.

I hope everyone is hanging in there today.  Gentle hugs and lots of love!

Fibromyalgia Poem

I find a lot of comfort, strength and hope in reading poetry, especially poems about fighting and surviving Fibromyalgia.  It’s easy to get depressed and lose hope, but we have to keep on keeping on no matter what.  So many with Fibromyalgia have lost their lives because they simply had no more strength to keep fighting…they just couldn’t bear the pain for one more day.  Those of us still here have to keep fighting for them because we can’t let them die in vain.

Here’s one of my favorite Fibro poems.  I’m sure I’ve posted it before, but it’s worth posting again because it says it all.

“Fibromyalgia is Real”

Fibromyalgia is real

There is no doubt

If you don’t believe it

Here’s what it is all about !

It’s about being a professional

At the top of your career

And losing your future

In less than a year

It’s about having unrelenting pain

No one can figure out

Having test after test

That shows nothing but doubt

It’s about knowing your pain is real

And fighting for your rights

Being so upset and frustrated

Getting no sleep so many nights !

It’s about trying to find the right doctor

Who can offer you some hope

Who knows what it’s all about

Who can give you what you need to cope !

It’s about learning to live again

With a whole new personality

Letting go of the person you once were

And facing a whole new reality !

It’s about losing friends and family

Because they think “it’s all in your head”.

But truth be known, there are days

You hurt so much, you can’t get out of bed !

It’s about setting new priorities

“So what if there is dust”

You have to take care of yourself now

And do only what you must !

It’s about holding on to hope

Each new day could bring a cure

It’s holding on to this hope

That will raise your mood for sure !

It’s about being thankful for the few

Friends and family that are true

Believing and hoping for a miracle

Praying for strength to make it through !

© 2004Kammy Salmon

I hope everyone is having a good Sunday.  Gentle hugs and lots of love!

Anger and Frustration

The frustration is overflowing!

I've been having one of those “kiss my booty” kind of days.  I had an excruciatingly painful night and I woke up on the wrong side of the bed.  Hell I think I woke up on the wrong side of life.  Everything and everyone was pissing me off.  I hate feeling like that, but it’s not something I can control, which leads to even more frustration.  I’m feeling a little better now.  I just have to stay away from anyone and anything that has the potential to piss me off.  Maybe I should just go to bed…yeah that sounds like a good plan.

What do you do on those days when anger consumes you?  I hope everyone is having a good day/night.  Gentle hugs and lots of love!