Identity Crisis

Although I have had Migraines since childhood, it was not until about four years ago that they became chronic and intractable causing me to have to leave the career that I loved behind.  As I began this journey, I purposefully set out to walk through this on my own terms.  The chief among these was not to live with a victim mentality.  While I had no choice about the severity of my Migraines, I realized that I did have a choice about my attitude and my behaviors.  

While I am open with people about the severity and chronicity of my Migraines, I want to somehow live "above" them.  I know inside that my attitude and behaviors will determine my psychological well-being as I walk this journey.  To that end, I strive to be as upbeat as possible, to refrain from complaining about and cataloging my pain, and to have an attitude which focuses on hope.  This frequently means that I present a face to the world which may not show the severity of my pain and disability.  

However, over the last few weeks, I have had a bit of an identity crisis where a number of people have mentioned to me or to others that my Migraines were not as severe as x person's.  Now, I'm not one to get into a "who has the most pain" match with anyone.  In fact, I deliberately try to act and speak as if I am not in pain - not because I don't want anyone to know but because it is what I have to do for my own psychological well-being.  The simple fact is that if I focus on my pain and give into my desire to moan, cry, curse and despair, I have but a very bleak life to behold.  I don't think I would be able to endure such a life.  However, when I "act as if" I am feeling better than I am, it helps me to get through the moment.  This has led to some people questioning the severity of my pain and to others questioning my authenticity.  

There is a part of me that wonders if I lived and acted how I really feel if others would take me more seriously and put more effort towards helping and understanding my illness.  I have to admit to wondering if I've shot myself in the foot because of this.  Would others (including doctors) help me more if I wore my "sick face" and retreated to bed in tears?  Has my choice of attitude presented an oxymoron to others that tells them something different than what I truly experience?

This is something which now lies heavily on my heart.  But it is also something which honestly makes me a big frustrated.  Yes, when I had episodic Migraines, it was natural to moan and groan and go to bed due to the pain.  But now that pain is a daily, 24/7 experience, maybe I've become accustomed to it - maybe I've developed some coping strategies which help me to give quality to my life.  These include hiding my Migraines when I can because I don't want a life that is defined by Migraines.  I don't want to be a walking billboard for all the effects of Migraines. It also includes me smiling even when I'm hurting; it means that I try to look for the good and for things for which I can be grateful.  It means that I try to participate in life to the degree possible and that I save my suffering for private moments as much as possible.   I have also found that in reaching out to others to encourage and support them that I take the focus off of me which, at least, psychologically lowers my perception of pain.  Does this mean that my pain is any less real or severe?  Not a chance!

I'm not suggesting that I am doing it the "correct" way - how could anyone know that?  I'm just saying that I'm doing what works for me a large amount of the time.  Are there days when I can't function at all?  Are there times when I weep because of the pain?  Are there times when I dread the future because I can't see a life without pain?  Yes, but I can't live focused on that.  If that makes doctors, friends, and family second guess the severity and frequency of my pain, I guess that's the cost I have to pay for I know that if I give in to this

on a regular basis that I will also be inviting despair, depression, suicidal ideation, and anxiety into my life.  And I choose not to do that.  It does not make me a "strong" person nor does it make me a malingerer or exaggerator - it simply makes me a person who is desperate to do whatever it takes to manage and to preserve some quality of life.  The bottom line is the question as to whether I will let Migraines dominate me or if I will find a way to live at peace with them.  Do I want a cure? Yes!  Do I wish things were different? Yes!  Am I going to let Migraines define my attitude toward life? Absolutely not!!

But I would ask that before you judge me that you take the time to ask about my experience.  I am willing to share that - I'm just not willing to live it out loud.  

New Year, New Strategies

New Year, New Chances for Migraine Treatment Strategies is the topic of this month's Migraine and Headache Blog Carnival hosted by the Headache Disorder Blog Network (Go to Blog Network).  This is a difficult topic for me to address as I have been dealing with Migraines for 45 years and with Chronic Migraines for at least five of those years.  In this time, I have tried well over 90 medications and tried physical therapy, accupuncture, chiropractic care, nerve blocks, biofeedback, massage, hypnosis, and many other things.  

I have to laugh inside when someone without Chronic Migraines asks me if I've tried "x" new treatment.  I can laugh rather than scream because I know most of them are well-intentioned in their questions; however, I have made the search for successful Migraine treatment into both an art and a science.  If there is an article out there about Migraines, I'd be surprised if I haven't seen it.  If there is a treatment that has any plausibility behind it, I doubt I haven't tried it (unless it's medically contraindicated or unavailable).  

So, the question is what chance do I really have for new treatment strategies in 2013?  I think, for me, this has more to do with mindset than with the actual treatment.  I cannot give up hope that my doctor and/or I will find something that will help better manage my Migraines.  My focus has to be on progress rather than on a cure.  Unfortunately, too many people without Migraines think that there is some "cause" for my Migraines that can be identified and treated so that I can be cured.  It's just not that easy.  Migraines are a complex neurological disease.  It's hard, if not impossible, to identify what caused my Migraines or made them become chronic.  Additionally, there is no cure for Migraines at this time.  The goal for treatment is to manage Migraines and to reduce the number and severity of them- not cure them.

So, what needs to change in 2013?  Aside from the development of new drugs and treatments, as well as research into the etiology of Migraines, I need to be willing to persevere in doing those things which I have found to  help my Migraines.  Those things include getting proper rest, eating right, engaging in some physical activity, utilizing biofeedback and mindfulness, tracking my Migraines with a Migraine diary, and open communication with my doctor.   I also need to focus on consistency in doing each of these things.  Like many New Year's resolutions, it is easy to say that you are going to do these things but to get stopped by circumstances - including not feeling well.  

My mindset has to stay focused on positivity, hope and education.  If I lack perseverance in any of these areas, I doubt I will be successful in gaining any new insights regarding treatment for my Migraines.  Positivity, hope and education are positive and proactive ways to address my Migraine treatment.  They are each choices.  While some may view positivity and hope as feelings, I believe that they are choices about how I choose to view things.  I have to consciously choose to be positive and to focus on hope.  I have to choose to educate myself and to interact with my doctor as a partner in my treatment and not as a recipient of care.  

So, will there be new strategies in this New Year?  Absolutely, but even more so, I think my focus of this year will be on refining what I know works and employing it on a more consistent basis.  

Oh, and if anyone has a solution for barking dogs, I believe that will also help my Migraines a lot!  :)