Wednesday, June 27, 2012

This one goes to 11

What makes having chronic migraine disease different from having episodic migraines? People who have chronic migraine disease suffer from 15 or more migraine days per month a month, lasting for 4 hours or more. That means that each and every month, at least half of the time you see these people, chances are they are in extreme pain.  But, really, this is just the tip of the iceberg. This definition says nothing about what living this type of "life" can mean.

When I was first diagnosed as chronic in 2003, it was really just putting a name to what I already knew. At that time, I had high hopes that it was the beginning of feeling better. In reality, what happened was the start of months, month after month, of doctors telling me "we" would this medicine or that therapy and see what happens.  At that time, I was still able to push through, go about my life, continued to train in martial arts and do all those mom things.  As time went on though, this became more and more difficult.

People don't realize just how hard it is to "push through the pain," but it's hard. By 2009, I had to quit doing the thing I loved most, martial arts.  Next to my family, Kempo Martial Arts was my biggest love.  I had found something that gave me joy, and now it was becoming impossible instruct classes; it was equally impossible to even take classes myself.  

I had always been that reliable person.  If you needed something I was there, but now I was no longer that woman; I had become less reliable.  Chronic migraine took my job, and my enjoyment of life. Also, because it has become more difficult to drive, due to pain and auras.  The medications that were tried did nothing but pack on the pounds. I may have worked hard at keeping them off, but the medications made short work of that. This is what being chronic means...that, little by little, your life is stolen from you.  You are no longer the person you once were.   

Now, we add the pain!! Pain is so subjective. We are given a pain scale numbered 0-10. Zero means no pain, 10 is the worst pain you've ever felt.  I used to compare it to child birth - being I wasn't lucky enough to have an epidural, I felt it all. Back in 2003, my daily pain, according to this scale, was about a 4-6; by 2009, it was 8-10 DAILY.  It was so bad that I agreed to be a part of an experimental treatment for a peripheral nerve stimulator (it is soon to be approved by the FDA, and similar devices are already being used).  

Even this isn't enough to describe what being chronic means.  At some point, we begin to realize that how we once got by is no longer good enough.  We can no longer push through, because now the migraines push back, and we pay for it with more pain.  We actually go through a grieving process, mourning our old lives and who we used to be, what we used to be able to do.  Support for us is needed now more than ever, but instead, we are often treated as whiners and malingerers - as if we wouldn't want to do anything and everything in our power to NOT have this happen to find a way to end the pain.  

But back to that pain scale.  Anyone living in chronic pain, any kind of chronic pain, uses this scale.  Some people will say they have never had a 10, because they can always imagine something worse.  This maybe true, or it could be a way of coping/denial that things aren't really that bad.  People that are severely, or intractably chronic sufferers, will tell you that there is no doubt that they have experienced a 10.  Often we feel that 10 doesn't even begin to express how agonizing we feel.  What comes to mind is the scene from "This is Spinal Tap".  We need a scale that goes to 11. Or more. Because we HAVE been there.

For us there is no doubt that the pain we have is a 10, and we PRAY that there is nothing worse than this.  Everyday we wake up to experience and put that 10 to the test.  There is a great blog called Hyperbole and a Half...she came up with an incredibly good pain scale, and believe me, some of us find it so much more appropriate when dealing with real pain on a daily basis.

There are many of us that LIVE AT 10 DAILY!!!!!  Their doctors tell them they don't want them to have pain medications because they are addictive, or because they (the doctors) don't believe in them. Imagine now being faced with agony, an 11, every day.  There is no life for you.  You cannot participate in the simplest things. Sitting at the table for a family meal is often quite beyond you. Really, all you can do is cry because of the pain and knowing it isn't going to get any better for you.  Tomorrow will be the same, and the day after that, and so on.  Life becomes bleak, and we mourn over and over, the life we used to have.  We dream of the days we could push through the pain.  We wish for death just to have an end to the pain.  

In 2004, my family took a trip to Las Vegas.  I didn't know at that time that change in air pressure and weather were my biggest trigger.  Our plane was caught in a cloud to cloud thunderstorm.  The Flight Attendant was strapped into her seat and said it was one of the worst storms she had ever been in.  I was in agony.  I wished that the lightning would hit the plane and kill me.  My husband and children were with me on that flight, not to mention all the innocent people there as well.   I didn't care!!!  I can not convey the horror of the type of pain that would make me wish death on those I loved the most!!!!  That is my 10.  How can anything be represented by just numbers, when words aren't enough to describe it???

I understand the need to have parameters to measure pain. I also understand the need to regulate drugs and prevent drug abuse. However... When it comes to being chronic and intractable there needs to be more understanding.  Yes, we are drug seekers, but not in the way you think.  Drugs don't get us "high," they go to the pain. Mostly. They address the pain. Incompletely. But they make it just a bit better. We want an end to our pain.  I have been one of the lucky ones.  The experimental stimulator has done wonders and brought my daily 10's to 6 1/2; with Botox, there has been more improvement, a 5, but that doesn't mean I'm still with out pain.   There is a whole other level of pain in my head, aside from what they are treating at the surface.  Migraines can move.  Just because I'm not feeling them in my head, they are still effecting my body. There are still feelings from the auras, prodrome effects, the hungover feeling, lethargy, and more.  I'm not "better" just improved. 

I don't know that if I will ever be "better."  I can't give up hope that I can have some kind of life again. As of now, I don't go anywhere other than my cave...aka the laundry is the darkest and quietest room in the house.  This is where I spend my days, eat my meals, and live my life when I'm too sick to move. I continue though, thanks to the availability of social media, to try to raise awareness in the hope that my daughter doesn't end up with this life.

I am happy to announce that will now be working along with  Advanced Migraine Relief and Treatment Center, LLC (AMRTC) to help raise awareness and help people get the help the so desperately need 

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