Self Reflection and Chronic Pain

“If you suffer it is because of you.  If you are blissful it is because of you.  No one else is responsible, only you and you alone.  You are your own hell and your own heaven too.”

Osho

I have had a few days where I have had to leave my comfort zone and just relax and rest.  If you know me, I am not a fan of resting and being still for too long.  I am the definition of an over thinker and having an invisible illness such as chronic pain has only intensified my roller coaster of thoughts.  After ten years of searching for a cure to chronic pain and finally finding a way to manage pain and live a life that makes me happy, it is very difficult for me to step away from the routine I am so accustomed to.  My day usually begins around five in the morning with stretches and exercise.  Of all the tools I use to manage chronic pain, exercise is definitely one of my favorites and most useful.  It helps with my chronic pain and my subsequent anxiety.  I stay busy throughout the day which is quite easy to do with a four year old daughter, work, and running a home that I am proud of.  My other favorite tool for managing chronic pain naturally is the utilization of distractions.  I train my brain to not think about pain and am usually quite successful in this exercise.  However, for the past few days I have been forced to rest in bed which on one hand has been very difficult.  I want to play with my daughter, run my errands, make dinner, and finish the damn laundry that has been sitting in the laundry room for two days.  I do not enjoy being vulnerable and relying on other people to help me and do things for me.  I begin to feel guilty, frustrated, and the little control freak buried inside me comes out in the silliest ways one can imagine.  For instance, I find it difficult to walk into my daughter’s playroom because I know it is not organized the ‘Jessica’ way.

On the other hand, the past few days have been a great lesson for me.  I have had to let things go and find distractions that have nothing to do with exercise and/or activity.  I have caught up on my favorite television shows, books, and even went back to my gratitude journal and began doing the exercises that are found in the book.  The book is entitled: “Simple Abundance” by Sarah Ban Breathnach.  I have read the book but have never attempted to truly do the workbook that accompanies this very inspiring book.  The first three assignments were quite simple for me.  I was asked to write down fifty things I am grateful for: things from having food in the fridge to being blessed with a beautiful, happy daughter.  The second was to write down the five things I want in my life more than anything.  Number one on my list was to have more children: no brainer there.  The third exercise was to write down the things that I wanted to work on within myself to find more inner joy.  Ironically, this was the easiest exercise the workbook asked of me.  I wrote down so many things that I ran out of room  the page allotted  me.  Sadly, the fourth exercise was much more difficult than I thought it would be.  The exercise asked me to write down five things or more that I loved about myself: my gifts.  I came up with two right away: empathetic and funny.  I even felt a little guilty writing down funny.  It took me longer to find five things I am sincerely proud of about myself then it did to find fifty things I was grateful for.  No one else needs to read my simple abundance workbook so why was I so hesitant to write exactly how I do feel about myself?  Yes, there are things I want to work on and am working on but there are more than two things about myself I am proud of.  However, I felt some sense of ridiculous guilt putting them down on paper.  I learned that I need to own the things I feel good about regarding myself and my life.  I have worked hard to get where I am especially with chronic pain.  I have a lot to be proud of and should not feel ashamed for feeling good about those things in my life.  I focus more on the things I need to work on than the goals I have already achieved.

I believe this to be true: no matter where we are in our journey with chronic pain or life in general, we should be more focused on our gifts than our downfalls.  The more we focus on the good in ourselves, the easier it will be to work on the things we know need some help.  None of us are perfect and chronic pain makes life incredibly difficult at times but we all have special gifts that we need to start putting more focus on.

 

 

 

 

 

 

The Tears of Pain

“I can explain it to you but I can’t understand it for you.”

Unknown

The topic of crying and chronic pain came up recently and the  question was asked: “Do you remember the first time you cried about your invisible illness, chronic pain?”  I racked my mind for days upon days trying to think of the first time I cried about pain and there are too many memories of overwhelming tears because of my invisible illness to even come close to remembering the first time I cried because of chronic pain.  I do not remember if I cried after I fell off of my bike in my early teens, resulting in brain surgery and months of recovery from my accident.  I am sure I did, I’m not superwoman but I have no recollection of being depressed or sad during the months I spent recovering from my fall.  To be honest I only remember good things: family members and friends visiting me, expressing their love and gratitude that I was alive and would be okay; flowers, cards, balloons, and gifts of all sorts; overwhelming amounts of attention and an outpour of affection from those I love the most in the world; and a calm sense that I had come very close to death and made it through something most people can never even imagine happening.  I remember fear but I have no recollection of sadness.  Granted, I was hooked up to machines and given many drugs for pain so I am sure that had a lot to do with it but I honestly remember peace and gratitude above all else.  My tears and heartache did not come until way after my accident when the invisible pain crept in like a robber in the middle of the night stealing much more than any personal belongings, this robber (also known as chronic pain) was stealing my life: something money cannot buy.

The first time I remember crying because of chronic pain was my junior year of high school.  I was sitting in social studies and one of my peers asked me why I was rubbing my face.  I had no idea I had been rubbing my face.  I later learned that massaging my face and head as I did, and sometimes still do is called a pain behavior.  A pain behavior is anything that brings attention to your pain.  I honestly had been rubbing my face and head for so many years that I had zero clue when or where I was demonstrating this pain behavior.  When one of my peers pointed it out in front of everyone in my class, I was mortified.  I had no answer.  I had never heard of the term chronic pain and had no idea why I was in pain.  I went home from school that day and swore I would never massage my face again but one hour later I was cognizant of the fact that as I was trying with all my might to do my homework, I had one hand on my face.  I ran up to my room in a fit of tears, scared as to what was happening to my body.  It was at that moment I believed I was going crazy.  That thought would last for the next ten years.

The second time I truly remember crying was in my freshman year of college.  I was in denial that I had a serious illness despite the fact that it was not visible and was trying to do it all.  I was trying to balance my first year away from home, a full schedule in school attempting to get straight A’s, and searching for a cure to the pain I was feeling.  I was either found behind my computer, taking breaks to cry in my bunk bed because  pain was taking me away from concentrating on my books or computer; in doctor’s offices getting various surgeries and or medications, or out with my friends trying to numb my pain by way of drinking.  I never told people I was going to the doctors or having surgery.  I thought my friends would think I was crazy.  With each medication, treatment or surgery my pain only got worse.  As my pain got worse, my depression and anger intensified until I could no longer take school, relationships, or doctors.  I spent my days crying in bed wishing I had any other life than the one I had.

I ended up going to the Mayo Clinic in Minnesota where I spent three months seeing every doctor the facility had to offer.  I had about four doctor appointments a day.  I spent those months in a hotel room becoming more and more distraught as nothing worked.  One day, my main doctor there called me and asked me to come in for a meeting with himself and his nurse.  I could hear, by the sound of his voice that nothing good was going to come of this meeting.  As I took a bus to the meeting, I felt as if I was walking down my own death row just waiting for my sentence of life to be over for good.  The Neurologist explained to me that I had a condition called chronic pain that was most likely correlated to my bike accident that happened in my young teens.  This was the very first time I had heard the term: chronic pain.  What he said next took my breath away.  He said: “Jessica, you have chronic pain and unfortunately there is no magic cure, medication, or surgery to take away your pain.  However, there is a program here at the Mayo Clinic called the Pain Rehab Center that helps people with chronic pain learn how to manage pain naturally and teaches people how to live a fulfilling life despite pain.”  I was in SHOCK.  I remember screaming through copious amounts of tears: “NO, NO, NO!  I will not accept pain.  I would rather die than live in pain the rest of my life.  I hate you.  I hate pain. I hate my life.  Why me??  I did not come here for this!!! I came here for help!!!  Pain had destroyed ten years of my life and you want me to live with pain?!  Hell no!”  I stormed out of his office and when I looked back through my tears I saw that the nurse was crying as well.  I went back to my hotel room and laid in bed for days.  I did not cry.  I was numb.  I did not get out of bed for anything, not even food.  I laid in the dark with no television, curtains drawn, willing myself to sleep but pain and anxiety had taken over my entire body.  I was done.  Days later I finally accepted a phone call from my dad who begged me to consider going into the Pain Rehabilitation Program.  I would have done anything for my dad and I finally agreed to go.  I will never forget the days I spent in that dreary hotel room laying in a bed millions of other people had laid in wishing my life away.  That is pain.

If you have read my story you know that the Pain Rehabilitation Program saved my life.  Yes, I still have chronic pain but I no longer allow it to control my happiness.  There are certain times I am more aware of pain than others but I have been managing pain naturally for years and although I do not have the life I had planned exactly, I have a life I am proud of and grateful for.  I think there will always be times I cry because of chronic pain but the tears do not last and I am very happy for the most part.  No matter how hard I try and remember the first time I cried because of chronic pain is like asking me what happens after we pass, I have no idea.  I spent over a decade in tears and am just very grateful that pain no longer has that power over my life.

 

 

 

 

 

 

 

 

Empathy and Chronic Pain

“I love when people that have been through hell walk out of the flames carrying buckets of water still consumed by the fire.”

-Stephanie Sparkles

There is a huge misconception that people with chronic pain want, thrive even off of pity.  Many believe those with chronic pain want to be coddled and treated somewhat like a baby.  I have had many people say to me: “Oh my, so young to be diagnosed with such a disease. I feel so badly for you.  Why did you have to fall off of that bike at such a young age.  Its such a sin.”  I know logically that people’s hearts are in the right places and they truly feel for me and others who have an invisible illness.  However, I never wanted pity from anyone even when I was at my lowest point with chronic pain.  I definitely do not want any pity now at a time in my life when I have been managing chronic pain so well for such a long time and have tried as hard as I possibly can to find the good in my accident and life with chronic pain.

The Oxford Dictionary defines pity as: the feeling of sorrow and compassion caused by the suffering and misfortunes of others.  I do not want people to view me as a suffering thirty five year old who has had the terrible misfortune of falling off of her bike at a young age leading her to a life to chronic pain.  However, I do want encouragement and at times empathy.  The terms pity and empathy are not alike whatsoever.  The Oxford Dictionary defines empathy as: the ability to understand and share the feelings of another.  People always ask me what helped me the most in my journey with chronic pain.  I learned so much at the Mayo Clinic in Minnesota.  I learned from doctors, physical therapists, nutritionists, etc. on how to manage pain naturally and not allow pain to take over my existence.  I learned that I could live the life of my dreams despite not finding a cure to chronic pain.  However, the best part of the program was the empathy I received from the people who were also in the program.   I became friends with people of all ages, races, genders, from all over the country.  On the surface most of us looked like your average American but we had one HUGE thing in common: we all had a form of chronic pain and for most of us our pain was not visible.  For ten years no one understood how I felt inside as pain after a long time becomes not just physical but emotional as well.  I was one hundred percent alone for a third of my life.  I was a turtle who only came out of her shell when she was desperate enough to spend time with people just as not to be alone in her pain for a few minutes or hours. The Pain Rehab Center at the Mayo Clinic allowed me to come out of my very hard, broken shell for weeks.  I was no longer alone.  I was understood and able to share my feelings/emotions with others who did not pity me but empowered me to keep going despite chronic pain.

There are challenges I face now and I do not share them with many people because the last thing in the world I ever want again is pity from friends and family no matter what my difficulties may be.  I want to be encouraged and empowered.  Pity does nothing but make another person feel worse than he or she already feels.  I love knowing people believe in me and believe in my dreams.  I do not want to hear: “I am sorry you are going through this or that.”  I want to hear: “Jessica, you are so strong.  You got this.  I have every ounce of faith in you and I am here if you need anything.”  You do not always have to be in someone’s shoes to express empathy or encouragement.  The greatest thing you can say to a loved one with chronic pain is: “I have no idea how you deal with this invisible illness every day.  You are so strong and I am so proud of you.  I am always here for you.  I believe you, you are never alone.”

A quote always sticks in my head when I write about empathy and I will close this article with this: “I do not want you to save me.  I want you to stand by me as I save myself.”

Being Judged Because I “don’t look sick”

This is exactly what someone looks like with chronic pain.  This picture was taken at a place called, Long Wood Gardens which is where we spent my dad’s past birthday.  To people walking by who do not know me would never believe I have chronic pain.  I am trying to go back in time and visualize this picture fifteen years ago when I looked nothing like this and my world was spiraling out of control due to chronic pain.  If twenty-one year old Jessica saw this mother and daughter at a well known garden exhibit, she probably would have cried wishing she could be the person seen above.   The Jessica of past would never have thought this Jessica has chronic pain and would have been filled with jealously just at the fact that this person seen above was a smiling, happy mother spending the day with her family.  Twenty something Jessica would have thought: “Sure, maybe this in shape, happy mom isn’t perfect but I would give my right arm to have her life.  If this lady could live with pain like I do for just one day she would never be able to have a beautiful daughter and be happy at a place like this.  I’ll never have anything like this girl.”

I wish I could tell my younger self that one day she would be the woman she sees who is smiling a real smile, healthy, and a mother of a more than beautiful daughter.  I am misunderstood on a weekly if not daily basis.  It was easier for people to believe I had chronic pain when I was forty pounds heavier, depressed, unhealthy, and at the doctors for pain at least three times a week.  I never worked out a day in my life until I was the age of twenty-two.  I never ate extremely healthy.  I could do keg stands with the best of them and my idea of a healthy dinner was pizza with broccoli on top.  People who know the Jessica I am now have a very hard time believing me when I tell them of my past because of how dedicated to health I am.  I used to hear whispers at the gym when people did not realize I could hear them over their headphones: “That girl says she has chronic pain but there is no way she does.  It is probably just for attention.  If I was in a lot of pain I would not be able to run on the treadmill or lift a weight.”  Hearing comments like such or knowing that some people do not believe me used to infuriate me but not so much anymore.  I used to feel the need to justify myself which takes a LOT of energy and is a total waste of time.  When asked or confronted on how I was able to do things when I had ‘chronic pain’ I used to go into my entire story: “Believe it or not, I exercise and live the way I do because of chronic pain.  I spent ten years searching for a cure and taking tons of medications for pain until I wanted to end my life and ended up at the Mayo Clinic in Minnesota where I learned to manage pain naturally.  They taught me to exercise correctly, and physical therapy taught me about weight lifting and the importance of strength training.  If I did not exercise or do all the things I do for my natural management of chronic pain I would be a total wreck just like I was in my young twenties.  You should see pictures of me from back then.”  This is literally a paragraph I would say on a daily basis: at least once a day.

Then I woke up.  I began to realize that the more and more I justified my invisible illness, the more I was focusing on my pain.  I spent years working on not focusing on pain and now I was spending an hour a day justifying myself to people who I was not even close to.   People are going to judge you no matter what: invisible illness or no invisible illness.  I truly believe people talk about other people as a way to not have to deal with their own problems.  I know.  I used to be one of those people.  You have no need to justify yourself to ANYONE.  The only person you need to improve for or impress is YOU.  We need to be more concerned with how we feel about ourselves and less concerned with how other’s feel about us.  It is your life, your health, and your happiness.  Do not waste the energy that some of you fight damn hard for on other people’s opinions of you and your life.  Never forget that everyone you meet is fighting a battle you know nothing about.

My Three Lives in Pain

“My illness isn’t really invisible.  If you look closely enough you can see how much it has changed my life.”

Unknown

My bike accident occurred when I was in my young teen years.  I feel as if I have led three different lives during my thirty five years in this amazing world.  The first thirteen are somewhat difficult to remember.  My earliest memories are with my dad taking bike rides to the park and playing kickball with my friends in our front yard.  Some great memories stick out and some terrible memories are there that I will never forget.  I was a kid with an enormous zest for life.  Despite not having the “perfect” childhood, I have more great memories than bad memories and my family did the best they could to provide me with a joyous childhood.  No one would have imagined the events that occurred during the ten years that followed my bike accident.  I remember the day I fell as if it was yesterday, down to the taste of the pink mint that I was chewing when the front tire of my bicycle got twisted with the bag I was carrying and my body went directly into a stone wall.  The damages that occurred on that day would affect the next two thirds of my life.

For the following ten years I would be a totally different person than I was during my first thirteen years here in this world.   As many of my readers know, my accident resulted in brain surgery to remove a blood clot and many other injuries that had me in critical condition for a few weeks and then bed bound for a few months.  I do not remember the pain from my surgery nor being extremely upset about losing three months of summer.  I remember fear but not pain.  I was doted on for months as everyone was beyond happy I was alive and healthy.  I received flowers, presents, cards, balloons, and because I was unable to walk up the stairs my dad gave me a bell to use whenever I needed something.  Once my scars healed and my hair grew back, I believed that my life would go back to the way it was pre-bike accident: not perfect, but happy.  I could not have been more wrong.  Brain surgery was nothing compared to the pain I would endure for the second portion of my life.  I looked pretty much like the Jessica I had been before my fall except for all the fun things that come with puberty like pimples and oily skin but I was in more physical pain than I had ever endured; the difference was that the pain was no longer visible.  I can remember the exact moment I began noticing the pain.  I was sitting in my Seventh Grade Social Studies class and a classmate asked me why I was rubbing my face and neck.  I had gotten so used to massaging the pain I felt that I started doing it constantly.  For the next ten plus years I would search for a cure to chronic pain.  The term chronic pain was not used during this time and every doctor and specialist I saw was mystified by my condition.  I was miserable, confused, in pain, and filled with a desperation for relief that no words can describe.  I tried everything to the point that if someone started a question with the words: “Have you tried……” I would stop them before they could finish because I truly had tried EVERYTHING.  Fast forward a few years and despite my huge passion to get my college degree, I dropped out after two and half years and drove to Boulder, CO to drown my pain in partying with friends.  I was the fun girl who was always up for having drinks or taking random road trips to Vegas.  I surrounded myself with people who loved to drink and party so that I could finally “fit in” with people as I had during the first third of my life.   I was the life of the party on the outside but inside I had never been more unhappy.  I came to a point that I not only hated my physical pain but I hated myself.  I hit a rock bottom that was harder than the wall I fell into that started this whole mess.

My friends in Colorado began to notice that I was not as okay as I appeared to be.  I was no longer the life of the party.  I was at the party but with each drink I cried more about the physical pain no one understood, not even me.  A good friend saw that I was heading somewhere bad fast and believed me when I said I was in severe pain despite the fact that the pain was not visible.  He believed me and that belief saved my life.  I ended up driving to the Mayo Clinic in Minnesota where the third portion of my life would begin.  After two months of seeing every specialist possible and undergoing every test possible, I was told that I had chronic pain and there was no magic cure to my invisible illness.  I am not sure I have ever cried as hard as I cried when the words: chronic pain and no cure came out of this brave doctor’s mouth.  Under his guidance and advice, he got me into the Pain Rehabilitation Center at the Mayo Clinic where I learned how to manage and live with chronic pain naturally.  I went unwillingly at first but deep down I knew I was headed for death if I did not try one last thing.  The first week was brutal and I did not say a word to anyone.  Then something clicked.  I started listening to the people around me whom also had chronic pain.  Their pain, like mine was mostly invisible as well.  I was no longer alone.  Chronic pain does not discriminate and I became close to people I never would have talked to because despite races and age, I had more in common with the people in my chronic pain group than I had with anyone in the world.  My entire life changed during the next three months.  I learned how to live with chronic pain and manage it without medications or treatments.  I began to live again as opposed to merely surviving.  I was alive.  I stopped hating myself and began to embrace life and follow my dreams.

I was petrified to go back to Colorado and wanted nothing to do with the lifestyle I had been living there.  I was healthy.  I had learned that I could be a healthy, happy person despite chronic pain.  However, I had to change my entire lifestyle.  I was exercising, eating healthy, reading again, writing, and wanted nothing to do with drinking or anything that could affect my chronic pain management routine.  I lost a lot of friends.  I was not the same Jessica I had been prior to going to the Mayo Clinic.  I went from being the life of the party to the girl who was in bed reading by eight o’clock and awake by five am exercising.  I was one of the most “boring” twenty-two year olds in college.  No one understood me and I was asked constantly to go to this party or that party but I had to say no even though I knew I was losing the group of friends I had once counted on to get me through the night.  I had to be selfish.  I had to focus on my health.  I spent a year in Denver, Colorado practicing the techniques I learned at the Mayo Clinic every day of the week: no exceptions.  I needed that year to totally focus on my health and my new way of living.   I then went back to school in Denver, CO and did get my college degree in Social Work.  I loved learning how to help people so much that I ended up graduating at the top of my class and once I stopped resisting pain, everything began to fall into place.  I am now thirty-five years old and there have been bumps in the road in my journey with chronic pain but nothing like the life I led for the second half of my life.

If you have chronic pain I want you to know that you are not crazy and you are not alone.  I spent a third of my life living in hell, wanting to scream and cry every second of every day.  I wanted to tear my entire face and head off just to get rid of the pain.  I did not have hope because I knew no one who understood what I was going through.   There was no light at the end of the tunnel.  I understand that you may be in the worst possible place mentally and physically but I need you to have hope.  There may not always be a way out but there is a way through.  I promise you.  If I can live a happy life despite pain, anyone can.  Don’t worry, I probably would not have believed myself either if I read this fifteen years ago but at least know that there is a light at the end of the tunnel and the light is very bright.

 

What Chronic Pain Feels Like…

“Chronic pain can make you feel like your life is being erased one moment at a time.”

Unknown

There are two types of pain and although neither are enjoyable, one is at least bearable.  The first type of pain is ‘acute pain.’  I’ve yet to see what is cute about any pain but I definitely did not come up with the terms found in the dictionary.  Acute pain usually has a resolution within six months and the treatment goal is no pain.  Opioids and narcotic analgesics are effective and there is a clear time as to when the pain will go away.  I have broken my ankle twice and because I knew the cause and the cure, the pain did not even bother me.  For a person without chronic pain, he or she may be miserable for the six months it took for their ankle to heal but for someone with chronic pain, a broken ankle is like a walk in the park except with the use of crutches.

Chronic pain comes from the Latin word: “time.”  The term chronic pain is pretty indicative to the invisible illness: chronic as in the pain NEVER GOES AWAY!  Chronic pain is pain that lasts six months or more and can occur without any indication of injury. This is the most frustrating disease as sometimes there is no known cause and one truly begins thinking he or she is crazy or the pain is “all in their head.”  Treatment options for chronic pain are very limited although I spent over ten years searching for a cure to my personal chronic pain.  I came to the conclusion with the help of the  Mayo Clinic that there was no cure but there was rehabilitation. I learned that one can live with chronic pain and not allow pain to dictate their life, health, or happiness.  I whole heartedly believe that chasing a cure to chronic pain for more than a year will leave you with more pain, more distress, more hopelessness, and more depressed than you have ever been in your life.  I know this was true for me and I chased a cure for over ten years: ten years of my life that I will never get back.  I do not regret those years because I am able to write and help others in their journey with chronic pain.

People ask me at times what chronic pain feels like and it is a question that is very hard to answer.  However, chronic pain is REAL.  Imagine having an illness you hate more than any other illness.  Whether that be a migraine, the stomach flu, or restless leg syndrome non-stop.  The pain or vomiting literally NEVER GOES AWAY.  You spend every waking hour of every single day in severe pain.  The pain is all you can think about morning, afternoon and night.  You barely sleep because the pain or the fear of the pain is so unbearable.  Pain rules your life and you will stop at nothing to rid your mind and body of the pain.  It feels as if someone is stabbing you over and over again and you have no control over their behavior.  You one day want to be stabbed to the point where you die but death refuses to come, just more pain.  That is how a person with chronic pain feels when he or she has yet to find their rehabilitation.  Remember that the next time you pass any judgement on a person with chronic pain.  Nobody asks to have chronic pain and I promise you whether or not a person’s pain is visible is a moot point.  Pain is pain and in my thirty-five years on this Earth, nothing has been more challenging than my journey with chronic pain.

Desperation and Chronic Pain

Do not ever lose your sense of humor, no matter how difficult your journey is at this given time and place.  I believe two things got me through my toughest years of searching for a cure to my invisible illness: the love for my family and the rare times I laughed.  Ironically my dad is the person who fit into both these categories: I did not give up because of my love for him and there were times he was truly the only person who could make me laugh.

If you understand the above cartoon, I’m sorry for your battle with chronic pain.   I remember back when I was in a terrible place with my invisible illness cancelling doctor appointments on a monthly basis because I was literally in too much pain to get out of bed, get dressed, and drive anywhere.  I chose to lay in bed on those days and just cry at the unfairness of my disease and the frustration I had that I could not find any relief no matter what doctor, medication, surgery, or specialist I tried.  I did not claim medical bankruptcy for buying clothes and having fun.  I was spending all our families money on one thing: a cure to my never-ending pain.

I started laughing today as I was playing with my daughter because the most random memory came into mind.  It was around the year 2001 and I was on my tenth year of searching for a cure to chronic pain.  I was living in Boulder, Colorado living two lives: one life was with my friends having fun drinking and living the crazy college life; the other life searching for a holistic cure to chronic pain as I truly thought I had put in my ten years using Eastern medicine and Colorado was a great place to find a ton of different approaches to pain.  Did any of them work?  No.  I was living two lives.  It is hard to follow your nutritionist’s advice to stop eating all wheat based foods and be drinking vodka tonics most nights.  Talk about an oxymoron.   Back to the funny memory (this memory is funny now but at the time it was anything but humorous.)  My dad was visiting me in Colorado for his birthday and Easter.  His visits meant the world to me but I really wanted him to believe I was doing a lot better than I was despite the fact that I was still on my now eleven year search for a cure to chronic pain.  I was seeing a hypnotist at the time who claimed she could cure all the pain I had.  After a few sessions and no relief she recommended me seeing her friend who used the newest technology to help people who were in physical pain.  I remember my dad taking me to this ‘doctor’s’ office and literally praying that the hypnotist was correct and this magic machine could cure me.  This was a moment of intense desperation.  The ‘doctor’ charged a fortune for me to sit alone in a room with what appeared to look like an oval robot.  I am not making any of this up.  After paying him an exuberant amount of money, he had me sit in a room by myself with this robot that apparently set off magnetic frequencies that dulled or removed a human’s physical pain.  Both this doctor and robot made out well that afternoon, but I was a hot mess.  Not only did I feel beyond dumb, I realized I had come to a point in my battle with chronic pain where I was relying on an oval, black machine to cure my invisible illness.  It was mere weeks later that I hit my rock bottom and ended up at the Mayo Clinic in Minnesota.  Looking back, I can thankfully laugh at this madness but at the time I was in seriously bad shape.

This story that I just threw out there may seem very odd to the average person but to a person with chronic pain this anecdote is sadly much more common than one would believe.  People with chronic pain will literally do ANYTHING to relieve their pain.  You may think he or she is crazy but as Elvis Presley once stated: “We are all addicted to something that takes the pain away.”  Part of my addiction to my invisible illness was searching for a cure and I am more than grateful that I found a way to live, laugh, and be the person I am today despite never finding that cure.  None of you are crazy and I know all of you can one day laugh at the madness we put ourselves through because of chronic pain.

White Noise

Years ago, when chronic pain ruled my world, the only place I felt heard was alone in the ocean.  I loved the waves crashing over me, melting away the screams that I could no longer manage to voice.  I loved looking out into the endless ocean because it was the only place that gave me hope that life still existed: the ocean expanded so far, I felt that maybe no matter how bad of a place I was in I too could one day expand as the ocean did.  I loved the feeling of being crushed by the rough waves and treading under water as I heard the faint noise of the water above.  What most people feared about the ocean, was what I found as the only peace that still existed in my world of pain.

The Oxford dictionary defines white noise as noise containing many frequencies with equal intensities.  Invisible illnesses such as chronic pain also contain many frequencies with some-what equal intensities.  Chronic pain does not come alone.  Chronic pain is followed by many other white noises: fatigue, depression, anxiety, insomnia, hopelessness, and sadly sometimes suicidal thoughts and ideations.   Over time people forget one has chronic pain and their screams can literally only be heard as white noise.  They feel alone, hopeless, and many find places such as I did with the ocean as the only place he or she feels heard and/or understood.

In 2005 the movie: “White Noise” came out starring Michael Keaton.  He plays a man who loses his wife, Anna unexpectedly and becomes obsessed with finding her on ‘the other side.’  He meets a man who works with the supernatural using a device called: EVP (Electronic Voice Phenomenon.)  He is a skeptic at first but soon becomes a believer and makes it his lifes mission to speak to his wife through EVP or as others call it, white noise.  I enjoy this genre of film and although this is not my favorite “ghost movie” it does correlate with how I view my own struggle with chronic pain.  Both the character played by Michael Keaton and his deceased wife are trying desperately to speak to one another but all they are able to hear is white noise.  Trying to explain an invisible illness, such as chronic pain comes out to those who do not have chronic pain as white noise.  The words are there but they are not comprehensible to the people we so desperately want to understand us and what we live through each day.

For over ten years I knew no one with chronic pain.  My life was filled with white noise drowned out by the voices of doctors, friends, and family.  No one could hear me and soon my screams could only be heard inside myself.  It was not until I went to the Mayo Clinic in Minnesota and entered the Pain Rehab Center that I met other’s who also had chronic pain and my white noise slowly faded away.  I did not need to explain what I felt because I was surrounded by others who felt the same exact way.  I learned so much while at the Mayo Clinic and practice the tools I learned there daily to manage pain without medication or treatment.  However, what I benefited from most was the commonality I found amongst my peers who also had chronic pain.  The worst part of an invisible illness is not being understood.  All you need is one person, whether that be a friend or family member or in my case a total stranger I met in the middle of Minnesota to truly understand how you feel.  I hope that my writings and stories help drown out your own personal white noise.  You are definitely not alone.

Feeling Buried Alive: Chronic Pain

I remember when I was a young girl talking with friends about the worst possible way to die and each of us had a different scary scenario for death.  I have no idea why we talked about such things although the conversations were probably correlated to the scary movies we watched in the Eighties and Nineties such as: “Childs Play” and “Sleeping With the Enemy.”  We were a generation drawn to scary movies.  My biggest fear was being buried alive: that was always my answer if this random/crazy conversation came up.  I must have seen a movie or show about someone being buried alive because ever since then I have had some form of Claustrophobia.  My younger brother and I used to wrestle as children and I literally would scream bloody murder if he (who was stronger despite our age difference) pinned me down for too long.  I felt as if I was suffocating and worse trapped with no control.  Fast forward many years and I found myself living in MRI machines because of my bike accident and subsequent chronic pain.  It came to a point that I truly could not bear another MRI because I hated feeling trapped in the machine and literally had panic attacks that if any of my doctor’s needed an MRI, I was given some sort of sedative to relax me.  They never worked.  My worst case scenario of how I would die was coming true despite me surviving my accident: I felt buried alive in more ways than one.

I was around the age of fourteen when I began my search for a cure to chronic pain.  With each day, month, and year I found myself sinking deeper and deeper into the ground.  Maybe that is where the term ‘rock bottom’ comes from however I found myself under a pile of rocks that caused me to actually want to die because I could not bear another day in my battle with chronic pain and worse searching for a non-existent cure.  I was not living and every moment of every day felt as if I was trapped inside my own body: a body of pain.  I am thirty-five now, managing pain naturally, and living a life of joy and gratitude as opposed to a life of pain.  With that said, I still have moments where I freeze in fear and pain.  I feel as if I am back in that MRI machine: gasping for air, unable to breathe, unable to move, trapped.  These moments happen either as I am trying to fall asleep or when I first awake.  Either way, the moments always happen when I am in bed.  I can manage the mornings when this happens much more easily  than I am able to do at night time.  If I wake up with this feeling of fear and being literally stuck, I can will myself out of bed and exercise.  People think I am crazy because I awake so early and exercise before the sun is up at times but this is what works for me.  Exercise is truly one of my biggest tools for managing pain without pain managing me.

However, nighttime is different.  Most nights I am way too tired to focus on pain or the random fears that enter my mind causing me to sweat, breathe heavily, have heart palpitations, and eventually make myself get up and just walk around the house.  Then I get in bed and try to sleep again and I am back in that MRI machine: STUCK.  This happens rarely but there are those nights where I cannot even find enough gumption to read or watch something meaningless on television.  Pain, fear, and the emotions that come with this invisible illness take over my mind and body.  I do not have restless leg syndrome but know what it feels like because when nights like this happen to me, I cannot stop moving and yet I feel trapped inside myself.  It is literally hell on earth.  I cannot believe I lived in this state of pain and panic for over a decade.  And people wonder why the number one reason a person with chronic pain dies is by suicide.  I made it.  That is what gets me through theses horrific nights: knowing that the feelings I am feeling will be gone but they are torture nonetheless.

If you ask my daughter why people are mean, she will respond with this: “Because they are sad inside.”  Never judge a person by how they look on the outside or how they treat you.  People will love you and people will hate you and none of it will have anything to do with you. Chronic pain is usually invisible and I try to remember when someone is rude to me or does not like me that they too could be fighting a battle I know nothing about.

Guilt and Chronic Pain

“You are not obligated to do everything a healthy person does.  You are not obligated to be an inspiration. You are not obligated to hide your illness to make other’s comfortable.  You are allowed to know your limits.  You are allowed to have bad days.  It is not your fault if other people leave you because of your illness.  It is not your fault that you have an invisible illness.  You do not have to apologize for something that is out of your control.”

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I never truly acknowledged the amount of pressure and guilt I put on myself until my daughter, who is now four was born.  I have always been a perfectionist but I never want to fail as a mother in any way, shape or form.  However, I believe my quest to be the perfect mom at times causes my anxiety levels and stress levels to go up which in turn increases my pain levels or at least I notice my chronic pain more.  There are things I did not have as a child that I want my children to have, but deep down I take this motherhood thing to a whole new level.  I love my daughter more than anything in this world and as most parents know it is a love that is unlike any other love in the world.  The love I have for my daughter scares me at times.  I wonder am I doing this or that right, analyze her actions as ‘age appropriate’ or dare I use the term: ‘normal.’  I never want her to be sad, feel abandoned or have a bad day.  The pressure I put on myself to make my daughter happy can at times be unhealthy for both of us.  That realization and throwing that sentence out into the world is not easy for me to do.  I am very much like other mothers I know and am friends with but I believe some of my childhood and my journey with chronic pain has shaped me into a mother who worries way too much about how her daughter is doing/feeling/acting and not enough time focusing on how I am doing/feeling/acting.   Cognitively I know and most of us realize this: the happier and less stressed/healthier I am, the happier my daughter will be no matter what we are doing.

I had an appointment for a physical scheduled for this gloomy Monday morning and I truly hate going to the doctor’s office because it reminds me of my ten year search to find a cure to chronic pain, during which I LIVED in the offices of every doctor imaginable but what I now dislike more is the guilt I put on myself because my four year old comes with me.  I almost cancelled (in hindsight I wish I had) because I did not want to drag her to a doctor’s office even though it is harder on my than her: thoughts truly do create our reality.  I packed snacks, games, books, magazines, colored pencils: the works just in case the wait was long which it ended up being: way too long of a wait for that matter.  After an hour and a half in the waiting room, I honestly could not take waiting any longer and Kayci had been patient up until we passed the sixty minute mark.  I told the front desk I would have to re-schedule and decided to go to a different office as I got very bad energy from the office and honestly the receptionists were very rude.  I have learned to follow my intuition and for some obvious and not so obvious reasons this is not a doctor’s office I ever want to go to again much less bring my four year old to.  The guilt kept getting worse as the clock ticked by and the loud TV screamed out medical advice.  By the time I finally made a choice to leave, I could feel my chronic pain mounting which I am usually able to put on the back burner.  It actually felt as if I had gone there for chronic pain and I have not seen any doctor for pain for years.  I think that is where my guilt stems from and that is absolutely ridiculous.

I did search for a cure for over a decade.  I did drop out of college for two years because my quest to cure my chronic pain took over my entire being.  I do feel that I lost ten years of my life but that is why I decided to learn how to manage chronic pain naturally.  With that choice, I must go easier on myself especially when it comes to parenting.   I am so far from perfect and have made many mistakes in my life but I know one thing and that is that I am a great mom.  If there was such a thing as a perfect mom, we would be living the life of Stepford Wives and I am sure half of their children are rebelling somewhere in the world.  I want to let go of the guilt.  I want us all to let go of any guilt we feel due to our invisible illness whether that be chronic pain or not.  I did not ask to fall off of my bike and have brain surgery.  I did not ask to live a life with chronic pain.  Neither did any of you.  I am exhausted from being so hard on myself and living in the world of apologies.  How many times a day do you find yourself saying: “I’m sorry.”  We are a generation (especially females) of guilt, feeling as if we are not enough, and saying the two words: “I’m sorry” at least ten times a day.   We are doing the best we can.  Are other people putting pressure on us or are we doing it to ourselves?  We can blame society, our friends, our family but in the end we need to stand up for ourselves and take care of our health and happiness because we are our biggest enemy which is such a shame.  Life is too damn short to live one more second in the realm of guilt.  It is odd, I know my readers are doing the best they can with their invisible illness and I am sure you feel the same about me.  Why do we credit others so much and forget the person that matters more than anyone in our lives: OURSEVLES.