Migraine & Headache Awareness Month 2014 #5- Not Just a Fairy Tale Anymore...

Day #5 prompt: The fairy tale or character that best describes you.  Tell us why

Ok.  This answer will bring about a chuckle and probably a few jokes from some of you (Aimee)...  But to me this fairy tale says it all.  When I think about what fairy tale that best describes me I think of Hans Christian Andersen's The Ugly Duckling.  (Ok- insert joke and laughing here)

I actually identify with this fairy take not in the traditional sense- the ugly duckling who doesn't belong becomes a beautiful swan.  The way I see it is that The Beast (Cluster Headache Attack) changes me from who I am into something very ugly.  

Many people think of migraine or headache and they think of going to a dark, silent room and retreating until the pain is gone (for hours or days).  With Cluster Headaches comes aggravation, agitation and the desire to put your head through a wall or window.  People with Cluster Headaches have been known to seek other forms of pain during an attack to find some kind of relief from the attack.  When I am in a massive attack I have been known to scream, sob uncontrollably, hit my head against any object that will not break (and some that will).  I do not want to be touched, talked to or looked at.  Any number of insults, curse words and threats can come spewing from my mouth.  An attack is a VERY ugly thing to see and a big reason why I hide myself from everyone.  

Migraine & Headache Awareness Awareness Month 2014 #4- A New Me

Day 4 prompt: Maya Angelou recited her poem "Still I Rise"

I hope you take the time to listen to Maya Angelou recite her poem before or after you read this post....

This poem brings me to tears every time I listen to it.  To me it makes me think of two areas of my life; my battle with The Beast and my battle with perception- mine and others.

For those of you who have read earlier posts of mine, you know that when I speak of The Beast I am talking about my Cluster Headaches. This is my monster that haunts me every day.  This is my pain that is so severe I believe I am dying or wishing I would.  The Beast has made me question my belief in God at times, my will to live and my ability to keep pushing forward.  The Beast has made me feel rage, depressed and alone.  The Beast has changed my reality.  But The Beast has not won.  I am still alive, loved and determined.  I have experienced one of the most painful conditions known to medical science and lived to talk about it.  While The Beast wakes me up every morning and keeps me from sleep every night it has not taken my dreams or hope from me.  The Beast has made me more patient, more compassionate, and stronger than I ever knew was possible.  The Beast has rattled me but it has not won!

One of the hardest things about being a chronic Cluster Head is accepting MY limitations.  It took me a long time to learn what those were and to live despite them.  It also took me a long time to understand that I am the only one who truly knows what those are.  For years I let others tell me what they were.  I let others tell me when I should stop working.  I let others determine my course of treatment.  I let others define what disabled meant to me.  And I let others tell me how I should feel.  It took me a long time to wake up and realize that only I could do these things for me.  Please don't get me wrong, my immediate family has NEVER done any of the above, but I did allow many other people to have too much control for way to long.  Most did it with the best intentions, but not always in my best interest.  I learned the hard way who trusted me to be exactly who I needed to be.  It took me a long time to see power when I looked at myself in the mirror.  Now that I found it, I will never give it away again!!!!

Migraine & Headache Awareness Month 2014 #3- What dreams?!

Day #3 prompt: Tell us about a recurrent dream and what it might say about, or mean to your diagnosis.

This is a pretty easy blog for me to write....

I do not have a recurrent dream because I do not sleep on a regular basis.  Cluster Headaches bring daily attacks.  For me my night time attack is at 3:30am.  Even if I am lucky enough to skip my nightly attack, my body still wakes itself up at 3:29am daily.  I am not sure if this has become my body's defense mechanism or what.  I get in patterns where I have a tendency not to try to fall asleep before my nightly attack.  I keep convincing myself that if I can just prepare myself it will get easier; it hasn't.  I did take sleeping pills for years to just calm down enough to fall asleep, but even those did not keep me from being ripped awake by my 3:30am monster.  Eventually my body became used to the pills and no longer worked.  I currently use meditation, biofeedback and yoga to try to help me relax.  Needless to say I spend most nights out on the couch so I don't keep my very loving husband awake!

Migraine & Headache Awareness Month #2- Hope

Day # 2 prompt (and forgive me but I have fallen behind due to attacks) is read the poem A Bed of Clouds by Ashley L. May and write what it brings to mind for you.  

The poem begins:

I sleep in the clouds, dream in the sky, I'll keep dreaming as life passes me by.

I think my dreams keep me sane, I dream of happiness, a life without pain...

I hope that everyone takes the time to read this poem before or after you read this post.  

For me it is a very fine line between dreaming and living a lie.  I spent the first year after my Cluster Headache diagnosis pushing forward.  In my mind, if I ran fast enough I would be able to outrun what was happening to me.  I learned all to quickly that my pain was way faster than I could ever be.  When I finally stopped running and faced myself I didn't know where to go or what to do.  I spent almost two years of my life living in denial, believing that tomorrow would return me to my "normal" self.  Those two years only lead me into a deep depression that I almost didn't come out of.  I shut myself in my home, away from family and friends.  I decided that I had to live up to my label of disabled, which to me meant that happiness was not okay.  I kept telling others that this would not last forever, while secretly knowing that my life was over.

I wish I could tell you what pulled me from my nightmare, but to this day I am not sure.  I know that my family played a HUGE role, as well as a support group I found online.  My family let me know that I may not be able to run faster than my pain, but they are here to carry me when I can't run any further.  My support group showed me that I was not alone in my pain.  I was also lucky enough to find a doctor who cares about me and hasn't given up on me.  She recently told my husband and my father that I am "the model patient, I do everything I can to try to get better".  I wear that compliment as my badge!!!  To me hope/dream are one in the same.  I do not accept that where I am is where I will always be.  

Migraine & Headache Awareness Month 2014- #1 What If......

It’s been said that patients who are able to talk about what they would do without their Headache or Migraine, tend to be less depressed and more hopeful. Some patients have lost the ability to dream about their lives without the present taking hold and destroying their ability to dream of something better.  

"What would you do if your dream of a pain and a completely symptom free life, came true?” 

This years blog theme 'Dreaming of a World without Headache & Migraine' is a tough one.  As a little girl I was taught to never give up, dream big, anything is possible.  As an adult, I have learned the cruel reality that dreams don't always come true.  That hard work doesn't always pay off.  And that some things just aren't possible.  I don't mean to come off as negative, I have just learned that while I can control the way I react to life; I can't always control life.  

I have struggled for the last 5 years to stop wishing for what my life used to be and to not hope for things outside of my reach.  I try to face every day as a new opportunity within itself.  I wake up each morning to meet who I will be that day.  This is the way I seem to be most successful at keeping the dreaded depression at bay.  

When I first read the theme for this years blog challenge I considered sitting out because dreaming tends to lead me to more pain.  But at this point I am up for anything.....

If I could wake up tomorrow and I was completely pain free and symptom free I would join the land of the living again.  I would make plans more than 2 hours ahead of time.  I would go and get a job and work towards achieving my license in Mental Health Counseling.  I would spend as much time with my family and friends just enjoying life.  And I would try to have a baby.  

That being said, if I wake up tomorrow and my dreams do not come true, I will continue to grasp every bit of hope I can find to keep putting one foot in front of the other.  I will continue to be thankful for those who support me.  I will keep looking for the lesson I am supposed to be learning.