Saturday, May 30, 2015


I've never been big on the rah-rah stuff.
I'm still not.
I just want to be out standing in my field.

I've always disliked going to motivational speakers. When I was selling homes it never failed; about once a year they'd have some yay-hoo come in to pitch about attitude and then sell the tickets to his "show." I'd be the one in the back with my arms crossed listening to the crap they'd spill and waiting for the subject of money to come up.

It always did.

I do believe that attitude can help or hinder just about everything in your life. It can push us beyond "the can't." I understand that. Having said that, however, I do not believe that attitude can cure Fibromyalgia. I believe it can definitely help with the management but I don't believe it can cure. Wouldn't it be nice if it does? We could sprinkle fairy dust and, voila! Now it seems that we are bombarded by Fibromyalgia and Chronic Fatigue motivational speakers. If we just improve our attitude then our symptoms will go away. 

It makes us sound like we are the masters of our own demise. What I find reprehensible is that they still make reference to depression and how people with Fibromyalgia aren't in touch with their own emotions or how to manage those emotions.

That really pisses me off. 
See how in touch I am with my emotions? 

There are many people with Chronic Fatigue and Fibromyalgia that can pinpoint the onset of their symptoms to major physical or emotional trauma or an episode with an illness. It seems that we've been dismissed because it couldn't possibly have started in this way.

HOWEVER........for just 29.95..................

If we change our diet we can be cured! JUST buy the book. There are tons of nutritional supplements out there and if we'd just take them we'd be cured. Everyone has the answer but somewhere they always manage to place the fault of Chronic Fatigue and Fibromyalgia squarely on our shoulders. Somehow we have trouble with our emotions, depression, vitamin deficiencies, marital problems, childhood issues, abuse problems, diet problems and a myriad of other issues that we can't control. 

I think no one in our society is allowed to be tired or sick. It's weak. We're supposed to just suck it up and multi-task our little stressful lives to the fullest. We're supposed to be tough and push through pain and fatigue. It's not too much to ask is it? Life is supposed to be lived and if we can't do that we're a burden and a weak sister. 

That's what we are.


Just cut us from the herd.


Sunday, May 24, 2015


Are we so in control that we're out of control?
What are we really dealing with here?
Control and Perfection.
And I can't have either.

I have control issues. I fully admit it, revel in it and have even tried to fix it. I think I came out of the birth canal with control issues.

Let's actually start there.

I weighed 2 lbs. when I was born. Back in 1952 my survival rate wasn't real high. Given my birth weight I was probably about 29 weeks when I was born. I was in a incubator for 3 months and only allowed to go home when I reached five pounds. Knowing what I do about premature babies there were all sorts of health issues that I could have had but didn't. I must have started fighting at birth.

One of the earliest memories I have is falling face first into a glass bowl filled with potato chips when I was four. All around me was chaos. No one knew if the glass was in my eyes and blood was streaming down my face. Someone had gone to get the doctor that lived across the street but I wanted "to see me bleed." The doctor came over and stitched me up right on the table. He threatened that if I moved I was going to the hospital. Evidently, I didn't move a muscle. My brother told me the only one who was in control that night was me.

Control morphed into perfection issues and organization issues. I would alphabetize my records and subsequently videos and then DVD's. I created my own Dewey Decimal system for my books. Even the spices in my spice cabinet were in alphabetical order. When I got into new home sales I would be like a whirlwind creating the perfect organizational system for my office.

Where did this get me?

I have been rocked to the core when I found out about chronic illness. Suddenly, after a car accident that I couldn't control, I found out that my body was not under my control anymore either. I always know that it could be a lot worse. The pain that I feel on a daily basis is nowhere near the pain of cancer and the subsequent therapy that goes with it. It's nothing like the emotional pain that people deal with when they experience the trauma of great loss. This is more like a constant, nagging pain that reaches up to slap you in the face every time you get a moment of life that is pain free. This pain never wants you to forget that it's still around and will take every opportunity that it can to steal your joy. 

I think from the moment I opened my eyes for the first time I was engaged in battle. It was a control issue for my life and to this day I think control means survival. To let go of the control means I am at the mercy of God and I don't think I've ever done that. I don't mean that you let caution go to the wind and figure everything will be fine. I cannot see myself as Pollyanna; I mean, it's just not me. I'm definitely not made that way, however, I have to learn to see the bigger picture.

Life experiences bring all those traits we were born with to the forefront. The loss of control makes me feel imperfect and weak but isn't that what humanity is really all about? We are really perfect in our imperfection. This constant quest for perfection ultimately ends in never finding it. Even if we think we have it will never be quite good enough. I think part of letting up, even a little bit, is becoming flexible. Did I say I trouble with that as well? 

Usually people who tell you change is good are the very same people who came up with the whole idea to change something that worked perfectly.  I have never been big on it because it always meant something icky was going to happen. Life is filled with things that are out of our control. I've lived that and you'd think I would have learned that lesson by now. 

I didn't. 

So what did I do?

I freaked.

Then I attended my pity party for one.

I denied it.

I got mad at it.

But I still haven't accepted it. 

(i'm working on it.)


Tuesday, May 12, 2015


Chronic pain.
It makes you invisible.
It's Fibromyalgia Awareness Day

Sometimes it isn't wise to be strong. Sometimes we shouldn't pretend that we feel "fine." Sometimes the smile shouldn't reach our eyes. Sometimes we should just let it all out.

I know it goes against everything that we used to be. Everything in us tells us that we need to mask the pain. We are better than that and it cannot win. We have too much to do to be sick.  We were movers and shakers. We were the typical Type A that plans all, thinks all, and believes that we can do all things and leap tall buildings in a single bound. 

We were Superwoman or men.

Limitations. This is a word that we don't like. Maybe because deep down we think we shouldn't have them. We actually feel bad that we have to describe a shopping cart full of symptoms to anyone, whether it be doctors, friends or family. Limitations should not be synonymous with weakness. I'll admit that I have trouble making that distinction. I forget that the words determination, perseverance and an incredible pain tolerance also come into view. 

I think I help perpetuate the viewpoint that this is an invisible illness. Because I consider some of my limitations as weakness, I have a problem letting people see the pain that I live with on a daily basis. I want people to see me the way I used to be. I know that's not right but I also hate appearing weak. When I do have a good day, I like to make the most of it. I break the cardinal rule of chronic illness all the time.

If you push you will pay.

I've always felt I could control my body. Well, not only my body. I love control. Whether it be my body or the environment around me....control is me. That is a huge part of my personality and that has been the hardest part to relinquish. I've had to realize that I can control my body about as much as I can control the weather. 

Speaking of...........I hate humidity.

But I digress. I hate the invisibility of this illness but I also wrap it around myself like a cloak. I'm not defined by this illness but the struggles of it all are tough. Just when I think I've moved into the stage of acceptance I find that I still struggle. I struggle with the fact that there will be days when the pain takes over. I struggle with the fact that technically I am disabled (whew, that was tough to write). I still struggle with the fact that my memory is not what it used to be (it isn't even close). I struggle with the muscle spasms that hit me mostly at night. I struggle with the feeling that I'm a slug.

Mostly, I struggle with being afraid of my own body.

Maybe it's time to take stock of those big girl panties.

Maybe it's not time to put them on.

Maybe it's time to take them off.

Saturday, May 2, 2015


Societal pressure?

Sometimes we are our own worst enemy. Every day we have to fight a war. War against pain, war against fatigue, war against an invisible illness that most don't understand, war against indifferent doctors and war against pharmacies just trying to fill our prescriptions.

Why then do we turn the war on ourselves?

I've been to support meetings and read blogs and hear people talk about medication. Some even seem proud that they don't and haven't given in to prescription medication. That's good if it works for them but to make anyone else feel less than human for taking them is wrong. Using medication that you might become physically dependent upon isn't a sign of weakness. That is an unfortunate side effect of maybe feeling normal and productive. I know I am intensely aware of the fact that I am dependent upon them. 

Dependent not addicted.
We, however, err on the side of the addict.

Maybe we're trained to believe that it's greedy and selfish to want something for ourselves. All I know is every time I swallow a pill I feel weak. 

And that, my friends, is stupid.

If we are responsible and knowledgeable about the power of the pills, if we "follow the rules" then there shouldn't be any self-loathing about using narcotics or pills that help us get the restorative sleep we need or take away intense pain. When did it become the norm that suffering is noble? 

It isn't.

We can do so much more when pain isn't creating havoc in our bodies. If we can sleep then maybe, just maybe, we won't be as stiff and sore in the morning. If that happens maybe, just maybe, we can get the exercise that we need. Don't people get it? It's a vicious cycle. We need exercise but it just hurts too much to start. There are days that I'm at the gym with tears running down my face. 

I think we need to like ourselves a little bit more and not look at medication as weakness. There are a lot of therapies out there and every one of us need to tweak them for our own use.  I don't think we should feel bad if we use medication to feel better. Having said that, there is a fine line between believing the pill will keep us out of pain and knowing that it will never eradicate the pain. The difference between a tool and a crutch is huge.

We fight a war every single day.

And sometimes it feels like we should give up.

We can't.

And we shouldn't be one of the civilian casualties.