Sunday, April 22, 2012

Prisoner of War

In the news a few years ago, there was a big debate on whether or not torture was an effective way to gain information from prisoners.  

Once, during some of my worst pain, I had to fill out paperwork for a new headache specialist.  I realized the next day that, when I was filling it out, I wrote things that weren't even true.  It wasn't intentional, I just couldn't think through the pain.

This thought comes back to me often.  It makes me think of the Spanish Inquisition and the torture those people had to endure, all to "save their souls".  I can tell you that it wouldn't have taken all that long to make me a convert.  If they want to make people talk, give them chronic migraines, at a "10" day after day, and they will tell you whatever you want, just to make the pain stop.   I don't make light of the pain of others when I say that the only difference between then and now is that we are being tortured daily for no reason at all...

Imagine what it must be like to be a prisoner of war.  Day after day you are held in a cell without light, without contact of other people, and knowing that at some point the pain will come.  You will be suffering the agony of the torture.  How bad will it be today???  When will it happen???   Is there a chance that a day could go by and you could actually feel "good".  Good, in this case, is just a day with out being tortured.  You still bear all the scars from the last session and the one before that; the scars haven't quite healed so everything is still fresh and raw. It is hard to live in the moment because even if there isn't any new pain, there is the anxiety that pain just around the corner, ready to start up once again...that knowledge just won't let you forget.  With any sound or light change, it makes you flinch because it could be a sign of something coming.  Will we get away without pain today???  If I make myself small, maybe it will forget me.  

This isn't the story of someone in a prison camp.  This is what a someone with chronic migraine disease faces day after day, every day.  A day out of the "hole" doesn't mean we are feeling better, just less hellish.  We don't know what it is like to be able to just wake up and go about our day.  We wake up and the first thing we do is assess the damage and pain level.  Everything we do has a consequence. Existing sometimes is all we can manage.  

Being a victim of long term abuse from our own bodies takes a toll on us physically, emotionally, and mentally. We look to those around us to help us, to liberate us from our pain.  Often we are treated as though we haven't been suffering at all. Often this treatment comes from those closest to us. Often, it comes from doctors.  We are not easily treated; we are the exception to the rules.  We want nothing more than to be freed of our prison and return to the life we had before this disease captured us.  Many of us can't. But we'd give anything, if we could.

Thursday, April 19, 2012

Denial isn't a river in Egypt

Denial is something that chronic migraine sufferers live with daily.  We pretend that we don't feel as badly as we do in order to get through the day.  We fake feeling good so we can attend parties or other gatherings, or we have to miss them altogether.  

We are living a lie and this takes a toll on us physically.  We push through our pain so that we can be the spouse, caretaker, sibling and/or mom.  There are responsibilities that have to be met and the fact that we are suffering doesn't stop them from having to be met.  So we pretend that we are okay and go about our day.  People see us and think that we must be feeling good if we are out and maybe even look like part of the human race.  They leave us not knowing that inside we are crying and can't wait to be back in the comfort of our dark room.  

We get very good at this.  So good in fact that when we say we are sick people don't believe us or think it couldn't really be that bad.  Just because we are upright and breathing doesn't mean that we are feeling good.  People tend to project their own feelings onto the people they are with.  If you are angry you might snap at someone around you for instance.  When we meet up with someone and they are feeling good they think we must be feeling the same.  Even if we are asked "how are you", we play that question over in our heads before answering.  Do we tell the truth and explain all the things going on in our life, or do we give the short answer because we don't think the person we are talking to really cares to know.  More often than not, we lie and give the short answer "fine".

Worse than the denial we feed ourselves is the the denial from our family and friends.  They can't comprehend that we could be THAT sick EVERY day.  They have never experienced the level or duration or pain that we do, so we might as well be speaking a different language.  They think "how bad can it be, I've had headaches and went on with my life".  This isn't a headache; according to the World Health Organization and the Migraine Trust, "Severe migraine attacks are classified by the World Health Organization as among the most disabling illnesses, comparable to dementia, quadriplegia, and active psychosis  (Shapiro & Goadsby, Cephalalgia, September 2007)."  Imagine dental work with out pain medications or being numbed first.  That is crazy, right????....Yet we are told every day that our pain can't be that bad, and we are just seeking drugs.  Well, we are, but it's to end our pain.  It is real!!!...It is AGONY!!!!  

Please, we beg you to try to understand things from our point of view.  The pain, day after day, with little or no relief.  It is like being a prisoner being tortured day after day.  Not only does the pain wear on our bodies, it weighs on our minds and spirits.  We need those around us to leave this state of denial that things aren't that bad and join us in reality. 

Tuesday, April 17, 2012

For Non-Sufferers

Have you ever had the flu?? Have you ever been so sick that when you move you can feel your blood pressure in your head and have the sudden urge to throw up??  Have you ever whacked your shin on a coffee table or been kicked and saw stars??  If you add those two feelings together, then magnify them by 100 and place the pain from your shin in your head.  The pain from a migraine can feel like a knife in your head.  Sometimes it feels like there is so much pressure our heads are going to explode, or we wish they would to feel better.  This isn't a headache!!!

For someone that has Chronic Migraine as a diagnosis, it means 15 or more migraines a month.   They can last for hours or weeks at a time. One can end and another will start.  There is no break.   It isn't something that will just go away or is easily worked through.  In order to get this diagnosis we have seen a specialist and have had MRI's, EEG's and have tried multiple kinds of medications, acupuncture, food eliminations and anything else that sounded like it had any merit.   Things that you can buy in the store or this magical cure that worked for so-and-so's mother or cousin, isn't going to work for us.  We are exceptional people!! We seem to be the exceptions to the rule. Our pain is not typical. We are desperate for a cure!!

There are different types of migraines.  An average person can have a migraine induced by dehydration or starvation and never suffer another. Some people have them more frequently, several times a month.  They are usually lucky enough to be able to take a medicine like Excedrin and go about their lives.  Then there are those that suffer from one or more the list below.

Some researchers say that once pain has found a route it is more easily transmitted each time after.  Like water flowing, once the path as set it flows easily.  So as time goes on our pain becomes more efficient.  

The migraine is not just only an agonizing pain in the head, it effects many parts of our body.  We have visual disturbances such as blurriness, sensitivity to lights and sounds, confusion, dizziness, loss of words, aches and pains in our muscles  and joints that create stress and tension.  Being in constant pain and then hearing negative comments from the people closest to us, just makes us feel worse.  We already have so much guilt at not being able to accomplish things as we used to.  We mourn our old lives and who we used to be.  We know we aren't as much fun anymore and don't enjoy doing the things we used to.  It bothers us when we have to cancel and let those around us down.  This just compounds the depression we already feel.  Some sufferers have become experts at putting on a good face and may  look great on the outside, but on the inside they are dying.  We would like nothing more than to be a functioning part of society and to be able to hold down a job.  Most of the time we are alone in a dark room, quiet, away from all, in isolation.  In prisons this kind of isolation is considered an intensive punishment, your psyche is effected by being alone for all that time.  We crave human contact.  Most of all we need you to know that this isn't our fault. We are victims, held hostage by this disease.  We look to our family and friends to reach out to us and pull us out from our desperation.  Too often tho, it is slapped away but words such as lazy or accusations about being a drug addict.  We need empathy and understanding. This isn't a hangover, the worst hangover ever still wouldn't touch what it feels like.  We didn't cause this.

Doctors and researchers are doing their best. Chronic migraine is not easily treated. There are hospitals and clinics specifically for head pain treatment and even they have had limited success.  Please know that we are doing everything we can to get back to the life we once had.  We are doing our best to raise awareness, thank you for doing your part and reading this.  Your attempt to understand the sufferer in your life will not go unnoticed.

Friday, April 13, 2012

Us and Them

Often we are surrounded by people that do not understand what it is like to live with chronic migraines, or any type of chronic pain.  We forget what it is like to be in pain.  If we didn't our instincts would kick in and we would go no where out of the fear of pain. Also there would never be any siblings, I wasn't given the luxury of an epidural with the delivery of my children and was given only Demerol.

What our family and friends need to know~We already live our lives with so much guilt.  We aren't able to be  the spouse, parent to our own children, good child to the aging parent, sibling when it applies or employer if we are still able to hold down a job.  We push through the pain and pretend like it isn't there trying to fool ourselves and those around us that we are able to do things like we did with out the pain.  The people around us don't always appreciate that.  Instead of support we are greeted with negativity.  Things are said like "you are sick again?? are always sick".  If there were anything else we could be doing other than suffering, we would gladly do it. When you start hearing you are shit day after day, sooner or later you will begin to think you stink.

What we, as sufferers need to remember~ You are sick, you can't possibly produce and be as effective as someone that is healthy so don't try to keep up.  You have to go at your own pace and learn to say no.  This is often the hardest thing to do.  We don't want to feel like we are being difficult and then take on tasks that we will most definitely pay for it later.   Be your own best friend!!!  Treat yourself the way you would treat your best friend.  Don't neglect yourself.  Making yourself a priority.  Taking care of yourself and seeing that your needs are met will make you a better person all around.  Pushing yourself when you are chronic will present itself somehow physically.  This does no one any good.  If  you are one of those that has control issues, you need to learn to delegate.  This requires as much control as doing it yourself.  If you have others in your home that are capable then they should be doing their part too.

Wednesday, April 11, 2012


You've heard that a positive attitude is essential to have.  I tend to believe this.  It is not the cure all to cares and woes but it won't make things worse.

In science we are told that everything essentially comes down to energy.  We are also told that 2 types of energy, positive and negative.  Like with magnets, when faced with the opposing forces they repel. In math, a positive and positive equals a positive.   We need to apply this concept to our lives. What ever we put out into the universe is what we will get back.

There was a time in my life that I was the moron magnet.  I would attract all the wackos.  After much soul searching and growing it became clear to me that I was attracting this type because it was what I was putting out there to the world.  I had low self esteem, felt unlovable, damaged, also sick with migraines but at this time I had no clue.  I was a murphy's pessimist, meaning that not only did I think the glass was half empty, I was waiting for someone to drink the rest on me.  It was just a matter of time before something bad would happen.

In 1990 my niece Katherine Mary was born, and died 16 hours later from SIDS.  How could something like this happen??? This innocent soul??  How could I ever by happy or smile after this?? Well obviously I did.  I learned that to survive that I needed to find something to make her life matter.  I had to find some good to come from her death.  So began my journey to find the good in everything, I was resolved to find a blessing with anything that seemed like a loss or indignity.  No bad experience would be wasted, only learned from.  I also started to notice that the more good I found the more that came back to me.  Finding the bad in things was too easy.  Looking for the positive was often more work but it was worth it.

So what does this have to do with migraines?  Well in March of 2009 I had the chance to do something positive not just for me but also for, you my pain pal!! I entered the study for a Peripheral Nerve Stimulator at Northshore LIJ.  It has been a life saver.  The deciding factor was that my daughter, then 12yrs old had her first migraine and it was hell.  This no longer became about me, it was about her and all of us that suffer to the point of wanting to end our lives.  This was going to be the positive thing I would do.   It took me four surgeries to get it right, that is another story.  I haven't regretted it for one moment.  Since then I have created support groups and have been able to help many people.  It is just a drop in the bucket compared to those that need help but I'm hoping that the long term positive will be awareness and a cure for all of us.

Tuesday, April 10, 2012

Parents with the wrong words

One of the things that is the most difficult to deal w/is the comments from our parents.......take these things into consideration the next time they say something insensitive....

We expect as parents that they should know the right thing to say and support us.......but if you take away the family connection and just see them as people you might not even like my case this true w/my father......he never understood my illness and he saw me as weak.....his comments were hurtful

What did society teach him/them about pain, mostly it is was suck it up, don't talk about it, deal w/it in private......their era wasn't about talking and was about sweeping things under the carpet

What is he/she like as a person....again take away the fact they are related to you act more the parent??? do you sometimes wonder why they don't respond like adults??........some people don't mature, just because they are in full grown bodies and have survived to a ripe age, doesn't mean they have matured mentally.......adding in what society has taught them about how to deal w/issues and poof you have a parent that says mean, hurtful or unsupportive comments......learn to distance yourself and you will be able to cope w/them a little better.

If you happen to be a parent now, you have that perspective of knowing we don't have all the answers, neither did our parents....we now have medical advances and support groups....we don't sweep as many things under the carpet ....we are bringing attention to our pain.........things will be better for the next generation, or better yet a cure