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Fearing the Future

“All negativity is caused by an accumulation of psychological time and denial of the present.  Unease, tension, anxiety, stress, worry-all forms of fear are caused by too much future and not enough presence.   Guilt resentment, regret, anger, sadness, bitterness, and all forms of non-forgiveness are caused by too much past and not enough present.”

Eckhart Tolle

I never truly knew how much I would learn from being someone’s parent.   My now, five year old daughter does not realize how much she teaches me.  I always thought that I would be the one teacher in our mother/daughter relationship.  However, I am not sure I have ever had a better teacher than my little girl, Kayci.  She teaches me how to be a kid again and enjoy the simple things in life.  She helps me to see things that I have seen for thirty five years and yet took for granted.  More than anything, she has taught me to live in the moment; something I have struggled with my entire life.  Kayci turned five a few months ago and lives in the present moment for the most part.  I noticed recently that she started talking about the future and the past a lot more frequently than she had in the past.  I do not want her to lose that sense of living in the moment and I want to live in the moment more than I do.  I worry about the future and cry about the past much more than any person should.  Worrying and despair increase my chronic pain and make it more difficult for me to manage it well.

I asked my daughter to help me remember to live in the moment.  We made up a game where if one of us started talking about the next day or the next week we would remind the other person to stop and come back to the present moment.   Kayci who is wise beyond her years said to me: “Mommy, if we talk about tomorrow we will forget today.”  Having someone, even if that someone is only five years of age remind me that I should not think about tomorrow is very helpful in my quest to live in the present moment and work on my never ending game of worrying.  If you have someone you love in your life and you spend a lot of time with (even if they are toddlers) ask them to play this game with you.  It is not only helping me but training my daughter’s brain at an early age to live in the moment; a lesson I wish I had learned as a child.

Living with chronic pain is hard enough then add on anxiety/worrying and you have a whole heap of new problems.  I have chronic pain and anxiety and there are times that I am not sure what is worse.  In all honesty, although I manage pain well chronic pain is the most difficult thing I have ever been faced with.  Anyone who has this invisible illness can attest to how difficult this disease is.  As far as I have come in my journey with chronic pain, I still struggle at times.  At the age of thirty five I struggle with anxiety and worrying about the future a lot.  My life is far from perfect and there are many things I want to change but change takes time.  There are many dreams I want to come to fruition but again those take time.  I try very hard to focus on my biggest blessing and that is clearly my daughter, Kayci.  Although I get frustrated with her at times, like all mothers do, I make sure she knows how loved she is and how special she is to me.  She has become my greater teacher.

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Negative Coping Mechanisms and Chronic Pain

“I feel the real me is being taken over by my pain and fatigue every single day.”

Unknown

I was recently asked by the amazing site entitled http://www.themighty.com to write about past negative coping mechanisms I used to deal with chronic pain and when I knew my coping techniques had gone too far and what I did to change my behaviors.  My life began falling apart due to chronic pain around the age of twenty.  I had spent five plus years searching for a cure, having many surgeries, being on multitudes of medications, and having my hope for a cure destroyed on a weekly basis for five years and I was done.  I could no longer juggle going to college, trying to receive good grades, spending three out of seven days of the week in the offices of doctors and trying to make and keep friends.   I dropped out of college and completely gave up on myself and my health.  I drove from New Jersey to Colorado where I had a couple friends and who were kind enough to let me stay with them until I figured out what I was going to do with my life.  Truth be told, I didn’t believe I had a chance at life and was just trying to get by and not think about pain.  I hung out with people who enjoyed drinking and loved the college scene.  My friends were drinking to be social and have fun during their years in college while I was drinking to numb chronic pain.  I still had yet to be told I had chronic pain as this was not a term used widely as it is now.  All I knew is that I had a terrible bike accident that nearly killed me and I was left with pain that was invisible to everyone, except myself.

I had never been prescribed pain medication and taking Advil had the same effectiveness to alleviating pain as eating Tic Tac’s all day would.  So, I took drinking with friends to the next level.  Being in a college town that was known for its partying made self medicating my invisible illness quite easy.  I fit in.  We were always able to think of an excuse to drink: Taco Tuesdays, Wine Wednesdays, Thirsty  Thursdays, then the weekend was an obvious excuse to party: TGIF!   Most of my friends were in college full time as I had been prior to dropping out and fleeing New Jersey.   They had extra reasons to celebrate and drink with everyone: doing well on an exam, the end of mid-terms, and the breaks we all know and love.  I felt awful celebrating with them when I was doing nothing with my life.  I loved school and had had so many dreams that I truly believed were stolen from me because of chronic pain.  The more I hated myself, the more I drank and ate.  Within six months I gained about thirty pounds.  I ate all day and drank all night.  Having a hangover was easier than dealing with chronic pain.  My friends understood hangovers but did not understand how in the world I had this pain when I looked perfectly healthy on the outside.  Hangovers were amazing compared to dealing with my invisible illness.

I started to get more and more depressed and hopeless.  Drinking was no longer fun; it was a means to an end.  I only drank to numb the physical pain I felt.  My tolerance went up and I needed to drink more to get the same pain relief.  Instead of laughing and having fun with my friends I always ended up sitting on our deck or on mattress crying into the bottle of red wine that I had grown to hate.  Each day and night seemed to get worse until one day I woke up very late in the morning and all I could smell was stale red wine.  I looked beyond my mattress and saw red wine stains covering the carpet.  I started to cry like I had never cried before.  I knew I had hit my rock bottom and it was either drink myself to death or find a way to manage chronic pain that I had not found in the many years I had dealt with this invisible illness.  As I cried on that mattress surrounded by red wine stains my good friend researched places that specialized in chronic pain.  He looked up every hospital and Pain Center in America and finally stumbled upon the Mayo Clinic in Rochester, Minnesota.   Two days later, we were in my car driving from Boulder, Colorado to Rochester Minnesota.  A few weeks later my life changed forever as I entered the Pain Rehab Center at the Mayo Clinic where I spent a month learning how to manage pain naturally.

The following year was tough as I spent that year solely focusing on my health and practicing everything I had learned at the Mayo Clinic.  I never thought about numbing my pain with anything and the thought of red wine made me want to vomit.  I have been using the tools I learned at the Mayo Clinic since I was twenty two years old.  After my year of focusing on my health I entered college in Denver, Colorado and got my degree in Social Work.  I loved learning about how to help people, especially people with an invisible illness.  I am thirty five now and it has not always been a smooth ride in my journey with chronic pain.  There have been bumps, curves, and some U Turns along the way but nothing can compare to my days and nights of numbing my chronic pain with alcohol.  My lifestyle is not conventional and I live a structured life that incorporates ways to manage pain with positive coping mechanisms.   If I can find a way to live a life with chronic pain without the need to numb the pain, anyone can.  One day you will believe me….maybe not today but one day.

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Managing Life’s Stress Along with Chronic Pain

“Just because they say action does not mean you have to do anything.”

Marlon Brando

This picture was taken just last week in the beautiful town of Lake George, NY.  My family and I went on a week long vacation that was so fun, peaceful, and unique it was difficult to drive back to reality this past Sunday.  My little mini me and I shed some tears as we drove away from our log cabin on the lake and onto the New Jersey Turnpike.  Vacations are always amazing but I find myself managing my chronic pain so much better when away from the every day hustle and bustle of real life.  When I pack for vacation, I make sure to include my “chronic pain management kit” which includes: yoga dvd’s, books, healthy food, CD’s for meditation, and my journal.  I am able to follow my routine for managing chronic pain naturally while on vacation and then some.   I am able to find endless, healthy distractions while away with the people I love.  It takes me a few days to adjust to the ‘real world’ once I return from a week away in what I call paradise.   I spend a week forgetting the stresses and issues I have at home and am able to surrender to the here and now for those seven blissful days.  We returned from our trip Sunday afternoon and the excitement of being home helped me forget my longing for that log cabin and pool.  I was busy unpacking, doing laundry, sorting through mail, and cleaning a home that had been alone for a week.  I went to bed tired and not feeling ready to wake up and face Monday in the non-vacation world.

Monday turned out to be a day from hell.  It started out just like any ordinary Monday: I exercised, got my daughter ready for the day, and left the house for errands and work.  I do not need to go into detail of what exactly transpired this past Monday but I now see how things really do happen all at once.   While I was at work,  I was anxiously waiting for a phone call that would either give me great news or not so great news.  I received the phone call around noon and it was not so great news. I was sad and shed a couple tears and got back to focusing on what I needed to be doing at that moment.  Five minutes later my phone rang again and it was a call from a close family member with really bad news that affects the people I love the most.  A couple hours later my phone rang one more time for even more difficult news.  I felt like I had to do something to fix the problems that I was faced with immediately.  Instead I called my dad and told him everything that had just happened and he shared the above quote with me: “Just because they say action does not mean you have to do anything.”  I realized that if I went into fight or flight mode than nothing good was going to happen and I was not only going to get myself into a huge mess, my little girl was going to be very upset and confused.

Logically I know that everything always works out but I struggle in the moments of bad news or life stressors.  I have two modes: catastrophic mode or fix the problem immediately at whatever cost mode.   Neither mode is constructive and both modes are very detrimental to my pain levels.  I forget how much stress/anxiety affects my chronic pain.  It does not matter how well I follow my routine for managing chronic pain when I am a crying, anxious mess.  I end up paying for my negative emotions physically once late afternoon/nighttime hits.  I exhaust myself to the point of extreme physical pain that I am no longer worrying about anything because I am only focused on pain.

People in my life forget that I have chronic pain which is not their fault.  I have had this invisible illness for twenty years.  Most of the people in my current life were not a part of my life when I was drowning in my fight against chronic pain.  They did not see the twenty one year old Jessica who spent her days in doctors offices and her nights drinking with her friends to the point of crying alone wishing she could either kill herself or chronic pain.  People in my life now see a person who states she has chronic pain but manages it naturally and has a good handle on her invisible illness.  I rarely if ever talk about pain as this is a very important tool for me in my management of chronic pain.  The more I talk about pain the more I think about pain.  The more I think about pain, the worse pain becomes.  A life with chronic pain can be very difficult even for myself at times.  I have come to a great point in my journey with pain but life stressors impact my pain levels more than I would like.

A lot of you are drowning in pain right now and feel that your pain will be forever and have no idea how you are going to make it through today much less the rest of your life.  You want to fix the pain right now, numb the pain right now, and you are either in catastrophic mode or need to fix this immediately mode.  My dad has always given me very sound, zen advice.  I urge you all to think about the quote that helped me these past few days: “Just because they say action does not mean you have to do anything.”

 

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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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Fearing the Future

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“Fears are stories we tell ourselves.”

Unknown

Above all of you lie a sentence with only six words included that sum up fear better than any phrase I have yet to see.  We are all afraid of something and many of us spend an exuberant amount of time focusing/fearing our futures.  We are afraid of not getting what we want and we are afraid of getting what we do not want.  I received an email recently from a young girl in college who has been following my blog for a couple years now.  She is a very kind, strong young person who has had chronic pain for a couple of years and is trying the best she can to manage her pain while working towards achieving a college degree in social work.  She asked me in her very encouraging email if I had remembered her and what my readers do not realize is that I find it very hard to forget any of you that reach out to me directly for help and support.  I am beyond flattered and amazed that so many people read my story because I do manage pain in an unconventional way. If I was the younger Jessica who was spending her days searching for a cure to chronic pain I would have never read a blog about a woman who has accepted chronic pain as part of her life and manages that pain naturally.  Then there are those of you who not only read my life story but you take the time out of your busy life that I know is not easy as you have an invisible illness to write me just to either say thank you and let me know that I have helped you or to ask me genuine questions.  You tell me your stories and you then see that I will never judge any of you for how you live your life or how you choose to manage your pain and you begin to trust me and many of you take some, if not all of my advice.  How could I forget any of your personal stories when I have not only lived/live your story but am astounded by your personal strength and gratitude.  With that said, of course I remember this young person who I am so very proud of and almost envious of in some ways.  She is in her young twenties and is in a place with her personal journey with chronic pain that I was not able to get to as early as she has.  However, she brought up to me some of her fears regarding her personal future and how she will be able to follow any of her dreams with this invisible illness: chronic pain.

When I was around the age of nineteen/twenty years of age I had more fears about my life than I had when I had brain surgery because of my bike accident.  I do not know what is worse living with chronic pain or the fear of pain itself and what we tell ourselves pain will steal from us.  I never thought I would have a family, be a mother, have a college degree or be the person sitting here writing about how I, Jessica Martin is managing pain naturally.  I  believed with my whole heart and soul that chronic pain had robbed me of everything I had ever wanted, desired or dreamed of.  I lived in pain and fear every second of every day.  The fear/anxiety made the pain worse and the pain made the fear/anxiety worse.  Ten plus years living in a never ending circle of pain and fear/fear and pain.  Turns out all the things I was fearing never happening because of chronic pain happened and all the things I feared of happening due to chronic pain never happened.  Do I have the life I would have had I never fallen off of my bike and chronic pain? No.  However, I have learned that fear of the unknown was just a story I made up in my head that caused me more emotional/physical pain that was truly unneeded.  Although, my life with chronic pain has taught me that fear is nothing but a story we tell ourselves, I still live in a lot of fear and that fear does have an impact on my pain levels.

I do not fear the things I used to fear when I was living in my darkest hours of chronic pain.  However, I am still a very worry filled person.  I spent most of my life being afraid and now I have to re-parent/re-teach my inner self to not be afraid for everything does work out.  I am not afraid of the little things in life that some may be afraid of.  I look forward to sky diving one day and I love roller coasters and haunted houses.  Those things do not scare me in the least, they excite me.  However, the big things in life scare me.  I still am afraid of the things I dream of happening not happening and the things I am afraid of happening coming to fruition.  Has my journey with chronic pain taught me nothing??  Everything I have ever feared not happening has happened just not  how I envisioned those certain life blessings to happen.    I know I need to let go and trust the process of life while working towards what I do what and I must stop living in a state of fear.  From childhood to adolescence to early adulthood up until my thirties I have had fear in my life and I did not know better and do not fault myself for those fears.  I do know better now.  However, to be fair to myself I am in the process of re -wiring a fear based mind into a peaceful, calm mind.   I can read and write as many quotes as I want to and I can logically know that fear is just a story I am telling myself but I am human and changing the way your mind works is a process.  Hell, it took me years to re-wire my brain from constantly focusing on pain.

This post is meant to thank the people who take time out of their day to remind me of what I am writing and remind me of my own personal story.  You are kind and generous enough to applaud me in how I have overcome so much and tell me what  an inspiration I am  to those who are living in fear due to chronic pain.  All of you are my teachers as well and I cannot thank you enough for your feedback and helping me in my own personal journey without even realizing what an impact you make in my life.  Thank you.

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Feeling Selfish Because of Chronic Pain

“For people with chronic pain self care is not selfish or irresponsible: its survival.”

Unknown

I have spent about two thirds of my life feeling somewhat selfish because of my invisible illness: chronic pain.  During the time in which I was searching for a cure to my pain I was consumed by anger, depression, anxiety, loss, and pain so severe I could not even will myself to read a book which was something I had always loved.  I was called selfish many times.  I was the queen of cancelling plans at the last minute, missing classes because I was in too much physical pain and subsequent depression that I could not get out of bed, and missing important family events because I could not imagine being around the people who thought I was this amazing little girl who was now going to college and being the Jessica everyone thought I would be see the pain even my smile could not hide.  I was embarrassed, ashamed, confused and in so much physical and emotional pain that I was “selfish.”  However, I was NOT being selfish because I wanted to do what I wanted to do and let people down.  I wanted to be with my friends, I wanted to be in class studying, and I wanted to be around the people I loved more than anything in the world.  Instead I was balled up in bed, alone either crying until the tears could just no longer fall or staring at the wall.  Some may call that selfish however I truly was just surviving and over the years I was hanging on by a thread. So not only did I feel guilty for an invisible illness I had yet to be diagnosed with as chronic pain but I felt hated because everyone thought I was just a selfish person who ditched the people she claimed she loved.  Hell on Earth.  There are no other words to describe those ten plus years of my life: pure and utter hell every second of every day of every year.  I no longer look back and see myself as being selfish.  I was surviving alone with a pain no one could see and a pain I could not fathom.

Fast forward to when I did find acceptance to my invisible illness: chronic pain and learned how to manage this disease naturally.  The first amazing thing to enter my existence once I came to a place of acceptance was hope.  Then the work began.  I began managing pain naturally when I was twenty two and I am now thirty five and it is still a daily routine for me that I do in order to manage pain without pain managing me.  I still have chronic pain.  I still have difficult hours and sometimes difficult days but the good days far out weigh the bad.  Is there a coincidence in my eyes that how I manage pain works as opposed to how I used to manage pain by searching for a cure, I truly do not believe so.  Is my life perfect? Hell no.  However, I am in a place that I never thought after my bike accident and subsequent pain I would be in.  My dreams have come true and more dreams will come true.  There is no exact destination for me and the journey does have its ups and downs but I am finally the Jessica I was meant to be.  With that said I do find people calling me selfish at times.  I would be lying if that term did not hurt but I am working on not allowing other people’s views on how I live or manage pain to interfere with my happiness.  Like the saying goes: “Never mock a pain you have not endured.”  I have to set some limitations in my life in order to control my pain naturally.  I cannot do EVERYTHING a person without chronic pain can do.  I will re-phrase that.  I can do EVERYTHING a person without chronic pain can do but if I did so I would be right back in the first paragraph of this article: Hell on Earth.  I have to take care of myself: body, mind and spirit and know and respect my limitations in order to take care of the people I love and be the person I was meant to be.  I say no to invitations that people think is very selfish of me.  Do I say no to all invites or requests to spend time with me: no.  However, I do say no when I know that a certain day is already busy and going to one extra thing will truly intensify my pain I listen to my inner wisdom and say no.  I have an odd sleeping schedule.  I go to sleep early: between eight pm and nine pm on most nights.  There are the occasional nights I stay awake later to spend time with the people I love but on average I fall asleep with a book in my hand around nine pm: yes on the weekends as well.  I am a morning person and part of my management of chronic pain is a good amount of sleep, exercise, and meditation.  I am a mother.  I like to wake up before my four year old so that I can exercise and practice a small meditation without her angelic yet at times frustrating toddler voice saying: mommy, mommy, mommy fifty plus times.  I have been called selfish for my sleep schedule.  Those are just two small examples of why I am called selfish at this point and time in my life.  If I could turn back time I would never have fallen off of my bike and I would never have had chronic pain.  I cannot do so.  I understand why people may see me as selfish at times but what they do not realize is that I still struggle with the fact that I do have chronic pain and although I am thrilled I am living a happy life despite chronic pain it still saddens me that I am unable to do everything I would be able to do had it not been for my invisible illness.

I beg all of you to not or try not and allow what others say to you regarding how you choose to live your life: and this goes for EVERYONE.  I am damned if I do and damned if I do not so to speak.  If I do not manage pain in a healthy manner I will be a miserable hot mess and people will call me selfish because I cannot really do anything and if I manage pain naturally I am called selfish because I have to set my own limitations.  So what is the lesson in that?  You have to do what you know intuitively is right for you.  If you are not taking care of yourself as only you know how to do than you are useless to everyone, especially yourself.  People will always talk and have an opinion.  Tune that crap out.  None of you are selfish people.  I know factually you are all doing the best you can and if you had a choice you would not have chronic pain.  You are not selfish people, you are survivors.

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