Migraine and Headache Awareness 2015 #6- Song of Hope

Day 6 Prompt- Song of Hope: What song gives you hope to hold, despite your Migraines or Headaches and how?

Music has many purposes for me as I move through my life with Cluster Headaches and Migraines.  When I am really in need of some HOPE I tend to listen to what I call anthem songs.  To me these are songs that fit the moment I am in and just make me want to sing at the top of my lungs (usually reserved for when I am home alone). 

Today I want to share two songs with you.  Each song speaks of a different time in these 5 1/2 years.

My First Song...... Sara Bareilles- Brave (live)

This song is so powerful to me because the words speak to the earlier days when my Cluster Headaches had taken over my life and I was unable to leave my home or even express to anyone how I was feeling.  I didn't hear this song until well after I made it through that period of my illness.  As soon as I heard the words, I thought to myself how honest they are. 

LYRICS:

You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up
Nothing’s gonna hurt you the way that words do
When they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

Everybody’s been there, everybody’s been stared down
By the enemy
Fallen for the fear and done some disappearing
Bow down to the mighty
Don’t run, stop holding your tongue
Maybe there’s a way out of the cage where you live
Maybe one of these days you can let the light in
Show me how big your brave is

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

And since your history of silence
Won’t do you any good
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave

With what you want to say
And let the words fall out
Honestly I wanna see you be brave

I just wanna see you
I just wanna see you
I just wanna see you
I wanna see you be brave

See, in my life it didn't really matter what others said to me.  My inner voice was constantly beating me up.  To overcome this, I had to be brave enough to look at myself in the mirror and find the good in myself.  In the past, my self worth was always about my level of education and my career.  Once neither of those mattered I didn't know who I was anymore.  So I had to get out there and see what else the world had to offer. 



My Second Song.... Rachel Platten -Fight Song

This is a new song to me.  But the second I heard it, I knew it would quickly become my new anthem for where I am at this moment in my life and illnesses...

LYRICS:

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep (in too deep)
And it's been two years
I miss my home
But there's a fire burning in my bones
And I still believe
Yeah I still believe

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

A lot of fight left in me

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong (I'll be strong)
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

Now I've still got a lot of fight left in me

Whether I am fighting the pain, others' opinions or my own demons; this song speaks to how strong I am.  There are days where I don't know that I can make it through to another.  When those days come around, I put this song on and know that I have so much more fight in me!!!!

 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." 

Migraine and Headache Awareness 2015 #5- Symbol of Hope

Day #5 Prompt- Symbol of Hope: What symbol helps give you hope for living with Migraine and Headache?

The symbol that helps give me hope for living with my Cluster Headaches and Migraines is personal to me.  A few years ago I received a gift from my sister at a time when I was really in a difficult place with my pain and life.  I was trying at the time to hide my struggles as well as possible.  But my family is always able to see past that.  Below is the image of the necklace that my sister sent me.  On one side the charm says strength and on the other side it says courage.  So when I find myself struggling, I can either wear this necklace or just keep it close at hand. 

 

 

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." 



Migraine and Headache Awareness #4: Large Migraine and Headache Hopes

Day #4 Prompt: Large Migraine and Headache Hopes: What large thing gives you hope for living with Headaches and Migraines?

The large thing that gives me HOPE for living with my Cluster Headaches and Migraines is my family (parents, siblings, husband and stepdaughter).  Over the last 5 1/2 years my life has changed so drastically.  Sometimes I look around and I can't believe that I am living this life.  I had big dreams!  Right at the time everything became so bad for me, I had just graduated with my Masters in Mental Health Counseling and got married.  It was at that point in my life where everything I had worked for was finally happening.  And then the next moment it all stopped.  I had to leave my job and my husband became my caretaker.  What a blow that did to me.  And I will be honest, I still struggle with the grief from 'what could have been'.  But through it all my family has supported me.  I live every day because of them.  I keep seeking out new treatments because of them.  And I find the bright side of things in life because of them. 
I hear so many people talk about living life for yourself.  I don't understand that.  When I couldn't see the other side of all of this, it was my family who lived for me, fought for me.  Now I live for them and fight for them.  It is because of my family that I have HOPE of living.  This life may not be what I envisioned, but with them by my side it's perfection. 


"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." 

Migraine and Headache Awareness 2015 #3- Small Headache and Migraine Hopes

Day #3 Prompt: Small Headache and Migraine hopes:  What small thing gives you hope for living with Headaches and Migraines?

For me this prompt is an important one.  As one hits the level where their pain becomes chronic and debilitating, it is so easy to lose sight of HOPE.  There are moments when I am in the midst of severe pain where I can't see the other side of it.  Trying to think in that moment that this pain will end at some point and things will be good again, is just to overwhelming.  So in those moments I think of the small things.  If I can just think of one small thing in the moment that brings me happiness or HOPE, I can get to the other side. 

Here are some of my small things that give me HOPE:

-Getting out of bed
-A good night sleep
-A piece of chocolate
-Hearing my cat purr
-Getting through an attack without overdoing medications
-Taking a walk
-Having a good conversation with a family member
-Seeing my family smile
-Smiling myself
-Walking my stepdaughter to and from the bus stop
-Cleaning my house
-Talking with my fellow pain warriors
-Reading a book
-Doing a puzzle

The small things that give me HOPE are things that I used to take for granted.  If I can get up in the morning, then no matter what else happens that day, I am already a winner!!!  I have learned that Hope is only as far away as my last good memory!



"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." 

Migraine And Headache Awareness 2015 #2: Who Helps You Hope

Day #2 Prompt: Who helps you Hope? Which person in your life has helped you most to hold on to hope, despite your Migraines or Headaches and how?


It is hard to pick one person who has helped me most because I have such a great support system with my parents, siblings, and husband.  But if I had to pick one person in my life who has helped me hold onto my hope, it would have to be my dad.  When my Cluster Headaches and Migraines started taking over my life and I started seeking out treatments, it was my dad who began accompanying me to my doctors appointments.  In two years we traveled the state of Florida from Miami to Jacksonville looking for someone who could offer me some kind of relief. 

In the beginning, each new doctor held renewed hope for me.  I remember our visit to Shands in Jacksonville.  I know deep down that we all felt that this doctor was going to bring me an answer.  So my dad and I loaded up his car with all of my medication and my oxygen tank to make the 4 hour drive to Jacksonville.  My appointment with the doctor consisted of 30 minutes of him telling me that  he was not going to be of any help to me.  I walked out of that office, sat down next to my father and just cried.  I was so defeated and felt that I had let down my entire family.  The last thing I wanted to do was to return to reality.  Somehow my father could tell, instead of turning around for home, he treated me to a nice dinner and gave me the evening to get my head back on straight. 

My dad has laughed with me as I got 32 injections of Botox in my face and neck.  He has kept me company during countless hours in waiting rooms.  Most importantly, he has allowed me to lean on him during those moments when I begin to doubt that there is still a reason to hope.  My dad has always taught me that no matter how hard life gets, no matter how severe the pain is; just give it a moment and see what the next moment brings.  Through his support and encouragement, I can always find hope. 



"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." 

Migraine and Headache Awareness 2015 #1- Favorite Hope Quote

Day #1 Prompt- Favorite Hope Quote: What's your favorite quote about hope, and how does it apply to your Headaches or Migraines?

"Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all"    Emily Dickinson


Hope to me is the only reason that I am alive today.  The Emily Dickinson quote above reminds me each and every day how simple it is to live.  When I am tired from the countless doctor appointments, sick from the piles of medication, and annoyed by the lack of progress; I still have hope.  You see, I have heard too many times that a doctor doesn't know what to do with me.  I have been told over and over again that there aren't any current treatments that I can try right now.  And my body likes to send me not so subtle hints that I am pushing myself too hard.  People can disappoint me, doctors can avoid me and life can have bumps at every turn; but HOPE just is.  It exits in the darkest corners.  It soars to the highest points.  And it survives the most painful of days.



"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." 

4 Years of Lessons

"Courage is found in unlikely places."  -J.R.R. Tolkien

 

 

Almost five years ago I was diagnosed with Cluster Headaches (The Beast).  Four years ago today I was forced out of my fulltime job as a mental health counselor due to the chronic pain of The Beast.  November 8, 2010 my world was rocked.  I never understood how much of ME was defined by my work.  It took me a long time to find my place in the world, being a mental health counselor was it.  No one could tell me that I wasn't good at what I did.  And walking away from it that day was completely devastating.  I fought with my devastation for a long time.  There are still days that I am smacked in the face by it.  Not a day goes by that I don't fight to get back to it.  Sitting here now I have tears in my eyes as I mourn what was.....

 

 

While I do allow myself time to mourn what was, I no longer punish myself for what isn't.  That sounds strange.  Why would I punish myself for a situation  I had no control over?  See that's just it, for so long I believed that if I had just tried harder I could have pushed through the pain.  It has taken me a long time to understand that I gave work my all, right up until the day I walked away from it to take care of myself.

 

 

Through these last four years I have realized for the first time in my life how strong I am.  There is not a day that goes by that I don't fight for each moment I am living life.  I accept small wins as big accomplishments.  I find a way to make a difference, even if no one else realizes it.  And I allow myself to be who I am.  I am not perfect.  I make mistakes.  There are days that the only thing I can do is get out of bed only to move to my chair, and in my world, that is OK.  I have found others who also battle The Beast and understand exactly how devastating all of this can be.  I am here today, with an amazing family who has cheered for me when I'm struggling, fought for me when I can't and put me back on track when I have veered to far off course.  For all of these things I am one lucky lady.  Today I celebrate all that I have gained in the last four years.