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 

Sunday, June 10, 2012


One of the hardest things to convey to people (aside from the daily agony) is how isolating this life is.  For an adult, it is bad enough, but most of us that are "chronic" started our suffering as children and teens.  If there is little understanding for us, as adults, there is none at all for children and teenagers.

We all want to belong.  As teens, it is especially hard. They're already struggling to find out who they are, learning to become independent, to make the transition between childhood and life as an adult. They're very influenced by their peers at this age - what others think or say about them can be lead to elation...or devastation...  Children can be very cruel in their comments (a trait that's all too often learned from their parents).  Now imagine that you are 16, and no one wants to bother with you because you are always sick with an illness no one can illness that sometimes even your family doesn't understand. You can't participate because the added activity makes you want to throw up, makes your head pound, makes life if it wasn't bad enough to have to give up your youth, you have to give up friendships, too... The teen years are difficult enough without adding in chronic migraines. Chronic migraines are debilitating enough without adding being a teen.

The world is a hard place.  That lesson shouldn't have to be learned at such a young age.  Please check out the blog of Caitlin, a high school teen, trying to deal with life while suffering from chronic migraine.

Sunday, June 3, 2012

Welcome to Chronic Migraine Time

Stephen King told a story called "My Pretty Pony Time."  Wikipedia gives us a summary of what this means - do you remember when you were little, how everything took s-o-o-o-o-o long, but "how when you grow up, it begins to move faster and faster, slipping away from you in great chunks if you don't hold tightly onto it. Time is a pretty pony, with a wicked heart." Time does seem to speed up as we get older.

The thing is, just as I am sure there is Pretty Pony Time, there is also Migraine Time.

Migraine Time is the time it takes to get things done vs. the things we want to get done and when they are actually accomplished.  In real time, you wake up, brush your teeth, maybe take a shower, and go about your day.  In Migraine Time, it feels like you are moving through Jell-o, making choices that require extra attention and extra time, all while playing a game of "how bad is the pain" followed by  that "uproarious" *cough* sequel, "Do I Have Enough Medication to LAST?" *sigh* Always a crowd pleaser, right?

Migraine Time happens in a fog. Migraine Time happens in THE Fog. A person in real time doesn't think twice. They're able to just DO things. We HAVE to think twice before we CAN do things. Sometimes we even have to think twice while we're doing. The whole time...

Migraines don't care about deadlines, in fact working under the added pressure is sure to bring on another attack, or, if we're already working with a deadline and a migraine both, to make sure that migraine is every bit as awful as it can possibly be.  We have to learn how to do things in other ways.  We can't just do things the way non-sufferers do.  Everything we do is more of an effort; it requires Special Handling.

By the time you read this blog, as of June 3rd, 2012,  we have launched a website:  Chronic Migraine Awareness  is now a live site for anyone with access to a computer can learn and feel at home.  With the help of many suffering friends, we have worked hard through our pain.  Most of us are unemployable because of the level of our disease, it's hard to make an employer happy when you're not even able to sit at a computer for more than 15 minutes at a time. Case in point - we have all tried to hard to have this site launched by the start of Migraine Awareness Month. This is a site about migraines, after all! But it's a site about Chronic Migraines...and with Chronic Migraines, we laugh...and remind ourselves that we're living with Migraine Time. We remind ourselves that The Migraine always has other plans... *sigh* With us, we can plan on the very real possibility that our (almost- to completely-constant) migraine will ratchet the pain up, throw in some auras, maybe a bit of vertigo - there's no END to the fun! *cough* It will keep us in bed, or in the bathroom being sick, or like me, in my "cave" - to everyone else it might be my laundry room, but to me, it's a refuge...the quietest, darkest room in the house. There we are, unable to do anything, existing on the sidelines, in Migraine Time again.  It will last for hours, maybe days, and that is just ONE migraine.  For us, though, "she" never comes alone!!!  Every month, for people with chronic migraines, "she" brings 15 or more of her friend along with the "party"...

So, the point is that, our new website is going to be done in Migraine Time.  It is a work in progress, we are doing our best while suffering and looking through one eye.  Welcome to Chronic Migraine Time!!.  Things get done when they get done, because that is the only way we can do anything.......BUT WE DO!!!!!!