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/

Trapped

This has been a particularly difficult week.  My migraines have been out of control which has led to emotions which are all over the place.  When I am down physically, it generally leads to my feeling down emotionally.  We all respond differently to the stressors in our life - the dark stormy periods of our life.  I tend to go to a place of self-doubt.  I ruminate over what I've done to cause this period of pain and isolation in my life. I doubt that I have anything of any worth to share with anyone.  I tend to believe that anyone who is still in my life is there because of some sense of obligation and is merely tolerating me.  I am vividly aware of how difficult it is to be a friend with me - I am not reliable; I am not predictable; I need help that any other "normal" person my age should not need. I have little purpose.  I spiral into depression and self-condemnation and wonder what the future could possibly hold for me.  I look at the things that hold me down and feel overwhelmed at times.  I convince myself that these negative beliefs and feelings are the truth and that I cannot escape from their inevitability.

Last summer, a friend was driving me to physical therapy.  As we were driving, a storm was brewing.  The sky became dark, and the wind was blustery.  We were too far from home to turn back and were on a part of the road where there were no places to pull of to ride out the storm.  All of the sudden, a huge crack of lightening lit up the sky and hit a tree about 100 feet in front of us.  As the tree fell, it also brought down the power lines and the power pole complete with a transformer landed 10 to 15 feet in front of my car resulting in a huge explosion of fire that travelled toward the car along the electrical wires.  The pole behind us also fell, leaving my car tangled in live electrical wires.  The sounds of our screams still resonates in my head.  After calling 911, we looked around to try to assess our situation.  We were literally trapped.  The electrical wires were wrapped so tightly around our car that the doors and windows were both pinned shut.

Quite honestly, both of us feared that we were not going to make it out of the situation.  We didn't know what to do.  After about thirty minutes, several fire trucks, two ambulances and a number of police cars were on the road across the way from us.  However, no one came near to help.  Through a combination of lip reading and yelling, a fireman told us that he could not come any nearer to the car because the electrical wires were still live.  At that point, help and hope was so close but yet elusive.

After being in the car for over two hours, the electrical company finally came and turned off the power so that the fire fighters could cut the wires which had trapped the car.  Later we were told how fortunate we were that the wires had trapped us in the car which seemed a very odd thing to say since the last place we wanted to be was in that car.  However, what we discovered was that the transformer that fell contained 50,000 killowats of power and had we been able to open the door to escape to what we saw as freedom, we would have probably instantly died from stepping on the wet, highly charged ground.

As we look back on it, there are so many things for which we have to be grateful.  We were together and not alone.  We were able to contact emergency services and although they couldn't provide immediate help, they were close by.  We were trapped in the car with wires which we later learned saved our lives.  We both called and heard the reassuring voices of our dads.  The rain stopped shortly after we were trapped so we were able to see what was around us and didn't have to sit in fear of what might fall next.

At the time, however, we weren't thinking of gratitude - we were wondering if we were going to die.  I am a lot like that in my everyday life with migraines.  I see the obstacles; I feel trapped; and I feel like I have no future and hope.  I let my fears spiral out of control, and I let my thinking become extraordinarily negative.  It is so hard to see hope when one feels trapped.  I know that I personally let my mind engage in catastrophic and unproductive thinking.

There is a Scripture that says
     "Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable.  Think about things that are excellent and worthy of praise." (Phil 4:8).

I don't know about you, but for me, this is sometimes easier said than done.  However, when I "force" myself to think about the positive rather than the negative, I find that it makes a difference in how I view my disease and my life.  It doesn't change the fact that I am in the midst of the storm, but it helps me bring to mind the things for which I do have to be grateful.  Just like my friend and I found many blessings as a result of our experience of being trapped, I choose to believe that there are blessings which will occur as a result of me being trapped with migraines and fibromyalgia.

What we all need is a sense of hope.  My sense of hope in the car came from knowing my friend was with me and that emergency personnel stood by.  It would be easy to share with you just the traumatic aspects of that event, for they are very real and, as I said, I will always hear those screams resonating in my ears; however, I would be telling only part of the truth, part of the story, if I left us trapped in the car fearing for our lives.  We found that in our time of greatest fear that hope was near.

My dear friend, Kelly Wahle, a fellow migraineur has just developed an exciting endeavor called "Project Migraine Hope."  Kelly, whose most recent post on her blog Fly With Hope, candidly shares the weariness she often feels.  Yet in the midst of this, she has sought out a means to allow us as fellow migraineurs to share what brings us hope so that we may learn from each others' experiences and mutually encourage one another.  Just as I  could not have made it trapped in that car without my friend Kris, we can't make it in this journey with out others who journey with us.  I encourage you to visit projectmigrainehope.com where Kelly shares the following:

"Project Migraine Hope is a community of videos where individuals who have Migraines(chronic or episodic) and loved ones/caregivers/friends of those who have Migraines of all ages and backgrounds share their stories with Migraine disease and share a message of hope for others going through what they are going through."  


I am excited about Project Migraine Hope because it is to be a compilation of true experts - we- the migraineurs who deal day in and day out with our disease but who someone how in the midst of it find the hope to live victoriously.  It is my greatest desire that many, many migraineurs and their family and friends will take the time to create a video or post their story of hope.  I could say it is because I want Project Migraine Hope to be successful, but the truth is, I need to see your hope during the times when my hope is low, and I hope my hope can encourage you when yours is low.  Thanks Kelly for undertaking such a wonderful project!

What Is Your Refuge in the Storm?

***This just in from the National Weather Service*** Hurricane Megrim is closing in on the shores of the Mississippi River with winds of 150 miles per hour resulting in massive destruction along the Mississippi Valley.  We had hoped to take you live to ours news anchor, Tim Witt, who was standing by at the Memphis Harbor.  Unfortunately, we have been unable to contact Tim who we last saw hanging on to a light pole as large pieces of debris from nearby homes were being swept into the river, and Tim was being buffeted by twenty foot waves.  Please join us in prayers for the safety of Tim and his crew.


Yes, I know that theoretically there are no hurricanes on the Mississippi River, or in the Memphis area; however, I have certainly been through my share of hurricanes, as I am sure many of you have regardless of where you live.  The winds of migraine have buffeted us and threatened to carry us out to sea along with the debris.  Frequently, that debris that we longingly watch as it is being washed away consists of our jobs, our financial security, our independence, friendships, and many other things we hold dear.  And like Tim Witt, we continue to hold onto the light pole hoping that our grip is strong enough to save us through this storm.


However, the bottom line is that we will never have a grip strong enough to keep us safe in Hurricane Megrim on our own.  Just like a regular hurricane, Hurricane Megrim comes with more than just rain - the accompanying symptoms of the storm are staggering and frequently overwhelming.


What is your refuge in the storm?  Or do you, like Tim Witt, hang on by the tips of your fingers hoping and praying that you will once again survive another storm without being washed out to sea?  I know many of us frequently feel like we are that sole person in the midst of the storm hanging precariously to whatever pole is close by; however, I urge you to develop your own hurricane evacuation plan so that you might find refuge in the storm.


As the winds begin to grow and the water swells, what are your first instincts?  For some, it is to climb under the covers and cry "not again, please not again, I just can't take this anymore."  We succumb to Hurricane Megrim and just pray that we come out alive.


However, we all have at hand an evacuation route that allows us to get through the storm with the least amount of damage.  We cannot escape the storm, but we can survive it.  My evacuation plan includes a number of safe houses along the way.  These safe houses are reached by phone or internet where I can call a friend who will ride out the storm with me and share their own strength to help me get through it.  Some of these are friends from my pre-chronic migraine days but some are also friends that I have developed because of my migraines - people I have met through My Migraine Connection, Migraine.com, Facebook and other networking opportunities to get to know other migraineurs.  These people are frequently my lifelines, my anchors, in the storm.


I turn to these people when I need someone to hold onto hope for me.  I turn to them when I need to know that I am not alone in the storm.  I turn to them to learn from their experiences with their own storms.  We share survival stories and gather strength from one another.  When I am unable to think rationally, they provide normalcy for me.  They speak words of truth to me, reminding me of other times when I have successfully made it through the storm.  When all I can do is sit and cry in despair, they sit and listen without condemnation.  They don't offer easy fixes or trite platitudes, but they do remind me of the resources that are available to me and help me to find hope and laughter in the midst of the storm.  These safe houses on my evacuation route are a place where I can be me - I can be vulnerable and know that I will not emerge hurt because of my willingness to risk the truth.


While my evacuation route includes a number of other stops - medication, biofeedback, prayer, deep breathing, ice packs, there is nothing like reaching out to someone who is also in the midst of the storm and who is surviving with grace, hope and dignity.  If you are alone in Hurricane Megrim, I encourage you to reach out to others who are in the storm.  I've mentioned a couple of ways to find these fellow journeyers, but if you need help finding safe houses for your evacuation plan, please let me know.  I am happy to share the abundant resources that have been shared with me.


Once several years ago, I read a book about migraines written by patient advocate and fellow migraineur extraordinaire, Teri Robert.  I contacted Teri because her book exuded hope and potential to me and as I read I knew she understood my storm because she lived through her own storms.  She was speaking not from theory but from the heart.  She helped me to connect with other migraineurs who have since become dear friends and safe houses in the storm.


We are all in this together.  We can share our experiences, our strength and our hope and be the refuge to one another that we so desperately need.  You do not have to stand in the midst of Hurricane Megrim holding onto the pole on the harbor by yourself.  You too can have safe houses along a proven evacuation plan.

Choosing Grace

I have been planning this blog for quite a while now, thinking about what I would want to say in my blog and why I would even want to have a blog. It's not exactly like I have great wisdom or knowledge to share with the world - there are plenty of good blogs and sites that do that! I write this not as an expert, but as a co-journeyer. I have come to realize that my greatest challenge in dealing with migraines and chronic pain has to do with my coping skills or how I choose to weather the storms of the life I lead.

I use the word "choose" with some discretion as I don't believe that one can "will" themselves to be well. Let's face it, if we could, most of us would have already taken that route. (And platitudes such as "you just need to get out in the sun," "pull yourself up by your bootstraps," "choose to get over this," "it can't be that bad, have you seen a therapist?" all make me quite ill.) What I have come to know, however, is that the quality of my life largely depends on where I put my focus. There are certain truths I can't ignore:

1. I have chronic, intractable migraines (as well as some other conditions)- which cause me to be in pain 24/7.

2. I have set out to educate myself about my conditions and have pursued the best medical help I can and have followed that advice. The conclusion has been that I am a "complicated patient." (Don't you love it when the doctor says that to you?)

3. I have had to give up my career and am pretty much homebound.

4. These conditions have impacted me physically, emotionally, financially, spiritually and socially.

These are the facts, and I could very well focus upon them - which I frequently do. I refer to my migraines as "the beast" and I find myself frequently battling the beast. More germane, however, is that I find myself often giving into the beast. This blog is really just my journal of how I am choosing to not give into the beast. I'd love to welcome you along this journey with me, for there are other things that I have also found to be truths. These truths that I equally can't ignore are:

1. I have a loving heavenly Father who is constantly seeking to strengthen me physically, emotionally, and spiritually.

2. I have much for which to be grateful. I have a wonderful and loving family; I have the best friends in the world; I have a virtual migraine family and small group that brings me encouragement, joy and support everyday; I have the world's best fur baby (Marlie), my financial and personal needs are faithfully being met, and many, many other blessings.

3. There are a number of things available to help me with handling my pain even when medications fail me. They include prayer, mindfulness, rest, stretching, exercise, eating right, adopting an attitude of gratitude, reaching out to other migraineurs, looking for ways to help others and, most importantly, a pair of world class sunglasses! (Oh, let me not forget to mention the full shelf in both my freezer and my refrigerator dedicated to ice packs!! God bless the inventor of ice packs! I believe I probably have every style and model available, but just in case I don't, I am always open to suggestions.)

The bottom line is that I cannot make my migraines miraculously disappear - I've tried. If only I could be like Bewitched and wiggle my nose and make everything right! Unfortunately, it hasn't worked. So, for now, what I fervently want to do is to learn to live with chronic illness with grace, hope, dignity and peace. This is not a passive task, but one to which I believe I must set my mind, my intentions and my actions. That certainly doesn't mean that I won't have the occasional meltdown, pity party, or temper tantrum. In fact, they may not even be that occasional. I admit it - I am human, fancy that? And I am quite sure that there are individuals reading this now who are rolling on the floor laughing because they have been witness to my meltdowns, pity parties, and temper tantrums and know that when I do it, I do it right! lol

However, the bottom line is that I intend to pursue and find grace in the storm by taking advantage of all the means available to me. For today, that means starting this blog.

I hope you will also find success in finding grace for the storm.

Thanks for listening to and for sharing in this journey with me!

Cyn