When Life Sucks Make Suckers!

Let me begin by saying that I really don't like the term "life sucks."  However, since it is used all the time, I thought I'd give you my take on it.  In this case, my purple sucker and ribbon represent migraine awareness and the reason migraine awareness is important to me.  I'd love to say that I have some grand aspirations of changing the healthcare system and the ways doctors interact with patients, as well as getting money and attention for migraine disease research.  These things are important to me and I really do wish I could do those things, but when I think about why I spend time writing about migraines and posting information about migraines, I find that my purpose is often much different.  

For me, awareness is about giving people hope - letting people who suffer from migraines and other headache disorders know that they don't have to live in despair or travel their road alone.  Yes, having migraines does suck, but who doesn't have something in their life that sucks? I have a strong belief that when we come together as a community of migraineurs and advocates that we can literally change that "suckiness"  into something can have positive ramifications in our lives, in the world and in the future.

Like a sucker which is sweet and long lasting, my involvement in migraine awareness has allowed me to get to know some people who I consider to be dear, life long friends.  Their battle with migraine disease hurts me to watch, but they are my cheerleaders. I gain inspiration from them to keep on going in the face of pain, loneliness, and frustration.   This has been life-changing for me and has been the result of other migraine advocates who have introduced me to the migraine community and have cared enough to reach out to me. Without this influence in my life five years ago when I first became chronic, I honestly don't know how I would have survived.  

Every time I post something about migraines on Facebook or in my blog, it is with the hope that someone who feels as lost as I did five years ago will see that they are not alone.  It is my desire that in building these relationships that individuals will become empowered to find the best medical care they can, but also that they will see hope in the midst of a very, very difficult situation.  

I don't post about migraines because I feel like the world owes me something or that they should understand me.  I write about it because I find personal strength in knowing that every time something is written about migraines in a positive, hopeful and educational manner that somebody's life might be touched and changed for the better.  That person may be a migraine sufferer, a friend, a family member or a member of the medical community.  Regardless, I kind of see migraine advocacy as a rainbow of purple where each link in that rainbow is the influence and caring one person gives to the next.  By joining forces, we become that purple rainbow that can be see by others - migraineurs and non-migraineurs alike.  They see it and hopefully gain strength, inspiration and hope from it.  Hopefully, they look upon it and are inspired to make a difference, to learn more, and to add their voice to the choir of migraine advocates.

There are some people who are destined to make a grand difference in the world and the system regarding migraines, but I believe we as migraineurs all have the ability to become advocates and make a difference in someone's life.  My personal philosophy is that we do this best through support, encouragement and education of the public that de-victimizes us and gives us power over our own healthcare, our lives and our emotions.  That positive approach seems to be contagious to me.  It draws others into it and makes them want to be a part of it, and they then become beacons of hope who pass it on to someone else.  

Basically, my goal as an advocate is to become a candy maker - a sucker expert extraordinare!  I hope that my advocacy might in some way make at least one person's life a little bit sweeter,  a little bit more hopeful, and a little bit more positive.

In Hiding

This is Milo, my newly adopted dog, hiding under his bed. 

Hmmm, is he already emulating me?

Have you ever felt like just hiding from the world?  There are many days when it is frankly easier to stay in bed than to get up and function with pain and the emotions associated with it.  I know intellectually that this is not a positive coping mechanism.  However, sometimes it seems that staying in bed is all that I can handle.  When I am hurting or feeling down, I tend to hibernate rather than to even try to use the things in my "migraine toolkit."


While there are certainly days and times when it may be appropriate to stay in bed, my experience has been that many of us deal with our feelings and our pain by sleeping - by seeking some kind of psychological or physical reprieve from sleep.  While sleep does make the day go by faster and protects us from dealing with our feelings, it is also something which can actually make our depression and pain worse.  It increases our loneliness and our sense of having no purpose.  


Most migraine specialists will talk with you about the importance of good sleep hygiene.  When we think about this, it is usually associated with having a regular sleep and wake time and getting enough sleep. It's easy to wonder what the harm is in getting "too much" sleep.  This article on WebMD shares some of the effects of too much sleep. Click Here

Here are some of the things I try to do when all I want to do is hibernate:


1. Reach out to other migraineurs through on-line forums, phone or Facebook.  Two great sources are Helpforheadaches.com and Migraine.com.


2. Reach out to my local friends and plan a low key activity.  I regularly hold a "movie night" at my house where my friends are invited to come (fragrance free) to sit in the dark and watch a good movie together.


3. Do something I enjoy such as playing with or training my dogs, beading, listening to a good book on the Ipod (reading is difficult for me with my migraines), watch a good movie or listen to music.


4. Take a short walk outside.


5. Stretch or use a yoga/tai chi video.


6. Journal/write.


7. Send cards to encourage friends.


8. Give myself a good (but positive) talking to!

Feeling Frustrated!

I have to admit that I am perplexed, even frustrated.  I know from looking at statistics that over 38 million people in the US suffer from migraines.  In fact, the World Health Organization classifies migraine disease as being among the most disabling illnesses, comparable with quadriplegia, dementia and active psychosis.

Migraine does not just impact the individuals who suffer from migraines but also impacts their families, their friends, and their co-workers.  Migraine has a signifiant and dramatic impact on one's life financially, socially, vocationally, physically and emotionally.

So the question I, and many others, are asking is "If so many people suffer from migraines, either directly or indirectly, why do we have so few signatures on a petition from the Alliance for Headache Disorders Advocacy (AHDA) which is asking for Congressional Hearings on the impact of migraine and headache disorders?  There are currently about 7,000 signatures; however, 20,000 are needed in order to present this to Congress.

This quite simply and bluntly makes no sense at all to me.  We cannot afford to assume the passive patient role or the victim role when it comes to migraine advocacy.  We need to make our voices heard.  There is an opportunity here before us to get our Congress to investigate the impact of migraine, just as they have many other diseases.  There are people, including patient advocate Teri Robert, who are planning to hand deliver this petition to Washington D.C.

This is a gift and opportunity which is within our grasp and means.  However, we must take advantage of it.  It isn't a lengthy or involved process.  All it requires is for each of us to go to the link below and enter our name, email address and zip code.  That's it!  Really, how easy can that be?

Please don't let this opportunity slip through our fingers!  If you've never asked friends or family members to do anything for migraine advocacy, now is the time to do so.  Forward this link to everyone you know and ask them to make a difference in your life by signing the petition.

http://act.allianceforheadacheadvocacy.org/5624/urge-congressional-hearings-on-impact-migraine-headache-disorders/