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See My Strength: Not My Pain

“I’ve lost track of the number of times in my life that I’ve wanted to give up.  The number of days, of moments, when I felt I could no longer tolerate the pain or keep up the pace of my life.  But, I’m STILL here.  Don’t ever tell me I’m weak or lazy.  Just like you can’t see my illness, you can’t see my strength.”

I have been sharing my story for over three years: the good, the bad, the scary, the inspiring, and the ugly truth of my journey with chronic pain.  At times I have shared stories of some of my amazing, strong readers who also have an invisible illness.  This week I interviewed a person whom I will call Patrick (in light of St. Patrick’s Day) and his answers were so raw and so well said that I feel the need to share exactly what this young man wrote.

  1.  When did you know that your pain was chronic, as is not going away as acute pain would and do you know what caused the pain?  My pain first started in June, a few days after my 18th birthday.  At the time I was in a program called Seal Fit. Seal fit is a program that trains you mentally and physically to go into the Navy Seal training and make it through the cut.  During one of the workouts, I was on a rowing machine.  An intense pain shot down my lower back through my left leg and into my foot.  I had never experienced anything like this.  I thought I had pulled a hamstring.  A few months passed and the pain only got worse. At the time I was trying everything that would help my recovery.  I was doing special stretches, using a TENS unit, and applying kinesiology tape.   I was still training just not as intensely.  The pain eventually got to the point that I could no longer take it and I went to see a doctor.  They thought I had a pinched nerve which caused sciatica and I was sent for an MRI.  I remember sitting in a pain clinic in Tallahassee, FL with my at the time girlfriend.  A nurse came in the room to alert me that a doctor would be in shortly to talk to me. I was facing away in a chair and twisted around to look at her.   As soon as I twisted around, the nurse gave me an alarming look and advised me not to twist my body.  I remember being so confused. How could twisting make ‘this’ any worse?  It didn’t make sense.  I then received what would be the first deep sinking feeling of many to come over the next two plus years.  I had a partially congenital  condition where my L5 vertebrae did not form on the left side.  The right side had broken from a previous dirt bike accident and my vertebrae had fallen out of place on my spine, crushing my spinal cord and sciatic nerve.  There was fifty to seventy five percent slippage of my spine.  They explained it was close to causing partial paralysis, which means it would have paralyzed my left leg.  That explained why I did not have feeling in a large portion of my leg.    I was then  scheduled to see a neurosurgeon to talk about having my spine fused.  I remember the first time I met this doctor, he seemed charismatic and confident.   At the time, I had no doubt that this nice man was going to swoop in and take all my troubles and pain away.  However, first impressions can always be wrong.  At the time of the spinal fusion consultations I was only able to walk about five feet at a time without stopping and getting off of my feet. The doctor explained that they were going to go in and pull the vertebrae back into a place and fuse it with rods and screws.  It was a “simple” procedure that lasted two hours and I would be able to go home in two days.

          My day finally came and I remember sitting in the waiting room waiting to go into surgery.  I said goodbye to all of my family whom all looked so worried, especially my dad.  This whole ordeal had caused some difficulties between my dad and I.  Our relationship had never been perfect and before this happened I worked for him.  When the pain first started he thought I was making it up to get out of work and that caused even more tension and fighting in an already difficult relationship.  That all changed once he was told that my spine was in fact broken.  I remember seeing him cry as they wheeled me into surgery and at that moment I knew he felt very bad.  I sat outside the OR doors for three hours.  I was finally on the table as they told me to count as they applied the anesthesia.  I was so relieved that this nightmare was about to be over.  I had no idea that my nightmare (of pain) was just beginning.  My two hour surgery ended up being six hours.  I woke up to feeling as if I was cut open with gas poured inside my body, sewed back up again as the fire was ablaze inside me. I ended up staying in the hospital for a month despite being told I would be there two days.  I really cannot convey the physical pain I was in, I feel as if I have somehow blocked out those days.  I could not walk, talk, and did not sleep for an entire week following the surgery.  The strongest IV medications would not even knock me out: I felt like I was dying.

I had never experienced time moving so slowly.   Minutes felt like hours, days like weeks.  The month stay felt like a year. I could not even put on my own shoes or clothes: it was humiliating.  I always promised myself I would die before I ever went back to that state of helplessness.   I cannot explain how hard that was and how much it took from me because it just isn’t possible and no one can imagine how close I came to dying unless they had seen it themselves.   Every blackout from pain and from my inpatient stay where they were trying to teach me how to walk again was worse that I could have imagined.  But, that was just the physical pain and I was still holding onto hope.

So, to answer when I knew the pain was not going away, I would like to say it was after the hospital and multiple rehab centers I went to.   But, that would not be true.  I remember my positivity and hope as a mask.  I was doing it more for my family that I was for me.  I could feel it.  I knew what was going on.

2.What changed in your life due to your invisible illness? 

I honestly do not know how to answer that because it changed my whole life.  It is not as if it limited some limitations and I had to adapt, it gave every limitation.  Pain changed everything.  No aspect of my former life was the same.  I am not the same.

3. Do you have a good support system and/or people or loved ones who understand what you are going through?

I have people who think they understand and want to understand.  However, the only person who I think understands is my mom because she sat there and watched everything I have gone through.  I do not know how she did it.  I know what I was going through was hell, but she had to sit there and watch it feeling helpless.  Many people say: “Oh trust me, I get it” because they have felt pain and/or some type of sadness but they do not really get it.  People have no idea what chronic pain is like and when a person tries to compare it to the pain of an end to a month long relationship or an argument with a friend, I want to scream.

4.  Have you had to stop any of your passions due to chronic pain?

One of my most loved things was skateboarding. Skateboarding was a mental and physical release for me and a hobby my best friend and I shared.  I am unable to skateboard anymore and that loss hurts deeply.  I also loved mountain biking and that passion is now gone as well.  However, my biggest dream that is lost is my dream of joining special operations, a dream I have had since the young age of three.  That dream was crushed in front of my eyes and I never even got a chance to try.  Chronic pain has taken every passion from me except for music and software engineering.

5.  What emotional aspects come along with chronic pain?

I would love to say that it causes you to feel down at times but you are able to get right back up but that is not the case.  I never wanted to die so strongly in my life.  I do not think I have gone more than two days in the past two years without wanting to die.  It’s not a figure of speech as some may use this gut wrenching phrase: I want to die.  I am not unstable suicidal as I could never do that to my family or loved ones.  I feel people with chronic pain are the only people who would understand this feeling.   It is more that I want to opt out of this life with chronic pain, not actually die.  I just do not want to be here most days because it is a constant fight: me against pain and it is exhausting.  Chronic pain causes a heavy depression.  I feel as if I have been kidnapped and I am being tortured however it is my own body torturing me.  For me, a lack of sleep is a huge affect chronic pain has taken on my life which only intensifies the pain and depression.  Sometimes, I feel like I died in surgery and this is hell.  I’m not crazy, I am clearly not dead or in hell but that is what this life now feels like.   When people hear what happened to me, I get one of two things.  Either people are skeptic and do not believe me or they look at me as if I am a toy that is now broken forever.  Neither one are encouraging or helpful.

6.What keeps you going?  How do you stay strong?

Sometimes I do not even know how to answer that.  I know it is partially my family, especially my mom.  I want to succeed for her.  I know she needs that.  The other is that I have always felt different from the majority of people.  I have gone through other hardships in life and forced myself out.  I do not want to see chronic pain win.  This is MY life and chronic pain does not deserve to take over MY life.  I just want the pain to die.  I want to kill the pain.  I still have goals and dreams although they are hard to see through this filter chronic pain has placed over my life.  I know I still deserve to be happy and have my dreams fulfilled.  I just need to find a way to get there.  I wouldn’t be strong if I gave up the feeling that I deserve to be happy.  We all deserve happiness.

7. Have you lost any friends due to chronic pain?

I had a girlfriend at the time of the fusion whom I had been dating for seven years.  I found out she was cheating on me as I was in the hospital.  I broke up with her and so I definitely lost her.  I lost friends as well.  I now realize some friends were only there to get out of me what they could get.  I do not regret losing these people and I do not miss any of these people.  If anything that is the only good chronic pain has done for me in my life.  Every single person I lost because of chronic pain does not deserve to be in my life.  You can look at it as if chronic pain purged all the toxic people from my life.  I am actually grateful for that.

8.  Do you see any good coming from your invisible illness?

I do in some ways, not everyone could handle this.  Not everyone has the view and perspective on life that chronic pain forces you to see. I do not think you can see your self worth or your true strength until you have been completely torn apart.  I know what I am capable of and can survive because of this invisible illness.  Not everyone could survive this and I am surviving it every day.

9.  Where do you want to be in five years? 

I want to be making a difference in the world.   I want to be working for Google or another technology company with the power and will to change the world.  I have always been passionate about technology and am currently in a program for  Self-Driving Cars.  Self-driving cars will bring a new lease to the blind and disabled.  More than anything though I want to be happy.  I want chronic pain to be behind me.  I am tired of being in this hole with no way out. I just want to look back and say that I made it through.  I feel like every time I get close to getting out of this hole, the hole only gets deeper.  I just hope by that point I have found a way to escape.

10.If you could tell people who have never had chronic pain something what would it be?

People without chronic pain are so lucky and they do not even know it.  I feel as if so many people are ungrateful for the healthy lives they have and how much worse things could be.  People seem to complain about this miniscule things.  Why don’t you try appreciating your health and life for once instead of trying to make the world revolve around you?  That may sound harsh and I apologize.  I do not believe everyone is like this, I have just found this to be in my certain situation.   People focus on what other people think too much when most of the time the other person’s opinion means nothing!  I just want people to realize that things could always be worse, including my situation.  That gives us all a reason to appreciate the things we overlook in life, and instead of focusing on the bad we should focus on the good and try to make it that much better.

All I want to say regarding this person is that he is only twenty years of age!  Is that crazy or what?  He has wisdom and strength some people never acquire during their entire lifetime.  I may have changed very tiny things in his response but this is his story and it reminds me so much of mine that it breaks my heart.  I know his pain and I know so many of you know his pain.  However, he has hope and determination.  At the age of twenty I did not have that hope and determination.  He has no idea how strong he is and I know this post will help far more people than he even knows.

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Forced to Grow Up too Fast due to Chronic Pain

“Girls my age are all: I wish I was skinnier, I wish I was tan, I wish my hair was longer, I hate my teeth, I want a newer car.”  And I am over here like I wish I could walk down these stairs without wanting to scream!”

Recently a young reader reached out to me who is suffering from chronic pain.  When I began writing four years ago about my journey with this invisible illness I believed my target audience would be mothers with chronic pain and I would be receiving emails from women who are trying to balance a life with chronic pain while taking care of their children.  I am a mother with chronic pain managing it well and am able to help those out there who cannot seem to get a grasp on this indescribable, invisible pain.  However, over the years I have received more emails and been contacted by older teenagers and young adults more than anyone else.  I was thinking about this last night and realized my target audience are those young adults who in the wraths of pain.  This made perfect sense to me and I had an Oprah AHA moment.  The worst years of my life were during the ages of eighteen to twenty two.  I was at my breaking point with chronic pain and life in general.  I can still remember, all too well how much my invisible disease had destroyed every aspect and facet of the person I was prior to chronic pain taking over my life.  During my young twenties I reached my rock bottom and it was at this time that I was literally drowning in pain and honestly wishing I was no longer alive.  I was not living any kind of life and to say I was surviving is even a stretch.  Therefore it does make sense why I have helped or guided those who are at that young age because I understand their pain better than I understand the pain of anyone else.  The people like who I am writing this post for do not realize that their words help me in ways I never thought possible.  It astounds me how strong this person is and how he is in such a better place than I was at his young age of twenty.

He brought up a very important topic that I believe will capture the eyes and minds of many young people who are drowning in their own pain.  When I was around the age of twenty I hated everyone and everything in the world.  Worst of all, I hated myself.  I isolated myself from all my peers because no one understood what I was going through and I could not bear to hear their problems because although I looked okay on the outside, I was near death on the inside.  Hearing my friends talk about cramps or a recent breakup from a two week relationship made me angry.  Hearing the problems of my friends made me want to scream: “YOU HAVE NO IDEA HOW LUCKY YOU ARE!  I WISH I HAD PROBLEMS THAT ARE SO EASILY FIXED.  I MAY DIE BECASUE OF THE CONSTANT DAMN PAIN I AM IN EVERY SECOND OF EVERY DAY. I WISH FOR ONE DAY YOU COULD WALK IN MY SHOES AND YOU WOULD NEVER COMPLAIN OF SUCH FRUITLESS MATTERS AGAIN. AND MAYBE YOU WOULD UNDERSTAND ME BECAUSE NO ONE ELSE DOES!”  However, I never said these words to anyone.  I either retreated to my bed to cry or asked my friends to have drinks with me.  I knew alcohol would numb my physical pain and I could then bear to hear about their problems.

I am thirty five now and I feel younger than I did when I was twenty.  I never found a cure to my chronic pain but I did find a way through the pain.   I still have chronic pain but it does not consume my life as it once did.  I can now listen to my friends problems without resentment or anger.  No one understands a pain or a struggle unless that person has endured that certain pain or struggle.  Anger and resentment towards anyone or anything only intensifies our own struggles and our own pain.  We are only hurting ourselves.  However, I want to remind anyone who is reading this who knows a friend or loved one with chronic pain that your loved one is suffering.  He or she is not selfish and wishes more than anything that they could listen to your problems and be there for you.  However, they cannot do that.  If you know someone who is truly suffering from an invisible illness understand that although he or she looks okay on the outside, that person is literally fighting for their life and doing the best he or she can.

This post is dedicated to Ethan: Thank you for your questions and please know that you are (like all of you) so much stronger than you believe.

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Self Reflection and Chronic Pain

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“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.

 

 

 

 

 

 

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The Tears of Pain

8a0d1215ad669c518ccf7f9921b8ac48“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.

 

 

 

 

 

 

 

 

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Empathy and Chronic Pain

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“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.”

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Anger, Anxiety, chronicpain, Depression, dreams, Exercise and Chronic Pain, Happiness, inner child, Law of Attraction, Let go, Managing Pain Naturally, simplify life, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain, Worrying

Being Judged Because I “don’t look sick”

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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.

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Anger, Anxiety, Brain Surgery, chronicpain, Depression, dreams, Empathy, Happiness, Intuition, Law of Attraction, Managing Pain Naturally, Manifesting What you Want, Miracles, Non Resistance, Peace, Support for Chronic Pain, Teenagers and Chronic Pain

My Three Lives in Pain

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“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.

 

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