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.

Letting Go of What We Cannot Control

“Anything you can’t control is teaching you how to let go.”

Jackson Kiddard

As I was practicing yoga this morning two words stuck with me that I knew I wanted to grow from: flexibility and the art of allowing.  Many people believe that doing yoga is an exercise to tone the body into better health and better flexibility of the muscles and tissues that make up our individual bodies.  However, that is just a small portion of what the art of yoga really is.  Yes, yoga has helped tone my body and has become a great form of exercise, it has also helped me become more flexible physically.  Yoga is also teaching me how to become more flexible in places that are far more important than the outside of my body: my heart and mind.  I will be very honest.  I am not a very flexible person.  There is a very sound reason as to why I am not flexible: chronic pain.  I manage chronic pain naturally and have a routine I follow each day in order to manage pain without pain managing me.  I spent a decade of my life with chronic pain consuming my entire life.  I lived, breathed, and felt pain inside and out for every single day of what could have been the best years of my life: my teen years and my early twenties.  I was in doctor’s offices or getting operations while my friends were on their phones planning what to do for the weekend.  I probably spent as many hours in waiting rooms as I did college classes.  My life could have been defined as: “hurry up and wait for a cure.”  After coming close to just ending my entire life I found what saved me and that was the Mayo Clinic in Minnesota where I learned how to manage pain naturally.  I have a routine I follow daily that helps me in so many ways manage my pain without a cure or medications.  I am living as opposed to barely surviving.  I had to let go of the idea that I would find a cure and surrender to the fact that I could live a happy, healthy life despite pain.  I have had to give up a lot in order to manage pain how I choose but I had nothing when I was looking for a cure so the benefits outweigh the negatives one thousand percent.

However, there are ways I am learning to be more flexible.  I am a mother and one huge lesson motherhood will teach you is how to be flexible.  Our family went away this past weekend to Atlantic City, NJ for a long snowed in weekend.  Yes, I packed yoga DVD’s and some healthy snacks.  However, I had to be flexible.  I stayed up much later than usual and ate things I would not normally eat.  My schedule was totally thrown off but I was having so much fun swimming and just chilling out in pajamas in our hotel room that I really did not think about pain despite not following my usual management of chronic pain.  I surrendered to just letting go and having fun making memories with the people I love.  I was able to get back on my schedule yesterday and I must say what I do does work.  With that said, there are ways I need to be more flexible in my mind and heart which will allow me to be more flexible in my life.  Our thoughts create our reality and I would like my thoughts to be more flexible.  Our mind is like a huge muscle and we can work out our biceps and triceps as much as we want but if we do not focus on what is inside our minds and hearts we will never be truly happy.  I am working on being more flexible and allowing the dreams I have to come into my world without forcing them.  One can work towards a dream or goal without it taking control over their entire existence.  Everything I have gone through in my thirty five years has been teaching me how to be flexible: body mind and spirit and how to allow things to happen while working towards what you most desire.

Break Out of Your Prison of Pain

 

“One of the marvels of the world is seeing the sight of a soul sitting in a prison with the key in his hand.”

Rumi

I am tired of being afraid.  I am tired of living inside my box of fear when I do hold the key to my personal happiness.  For fifteen years I spent my life being afraid of physical pain and as many of you know the fear of pain is worse than the pain itself.  At times I am still filled with fear of pain but it no longer controls my life.  However, I am way too often stuck in my own box of fear that I forget to breathe and be calm and happy.  2016 was not an easy year for me.  However, I did learn a lot about myself and know the exact things I personally want to change in order for me to live the happiest life I can in the new year.

I am tired of being afraid of the past, the present and most of all the future.  I want to break free of this box of fear and live my life to the fullest.  I am tired of being fearful to express my feelings, emotions, and thoughts because of what someone will think or say.  No one has control over my happiness, my choices, or my life except myself.  I hold the key and I do find myself in my own tiny prison with that exact key in my hand too often.  I believe we all do in some way, shape or form.  What are you afraid of?  What prison are you living in that you want to break out of?

The prison I find myself in at times is very difficult to escape from as all of our personal prisons are.  We live in a world of fear but we can break free of our personal fears.  How?  I’m working on that.  I’m working on myself and I want to be the best version of me that I can be.  Happiness is an inside job that no person, place, or object can bring you.  Our thoughts determine our lives and I am sad to admit that many of my personal thoughts are derived from fear.  I am not taking away the credit I deserve and all of you deserve for the invisible battles we have each been given and fight every day.  We are all doing the best we can but maybe at times we are trying too hard.  I am extremely tired of overthinking every little thing.  Deep down I know that my fears are worse that what I am actually afraid of.  My fear of anxiety is worse than my anxiety itself just as my old fears of pain were worse than the pain itself.

I do not expect to be happy all the time nor do I expect everything to turn out exactly how I want and/or plan.  However, I do know that being afraid of things not working out how I dream or desire is not going to change the outcome.  I cognitively know all of these things but I am now ready to truly work on these thoughts that cause me added pain and anxiety.  I believe that fear is holding me back from my deepest dreams and desires and as I said in my first sentence: I am tired of being afraid.

How can you break free of your personal prison in this upcoming year.  Break out of your prison for you not for anyone else.  We are never too old to stop learning or growing.   I know many of you feel stuck.  Most of you feel stuck due to pain and I understand that feeling more than anyone.  What would your life look like if you stopped being afraid?  I do not have all the answers but I will be sharing with all of you what works in my new year and what does not work.  I truly want to find my personal peace and happiness without the constant ups and downs that come with life, chronic pain, and anxiety.  I know I can do it.  I know we all can.  You hold your key to your life.  Only you know how to open the lock.

 

A New Year: Be Present

“Healing comes from gathering wisdom from past actions and letting go of the pain that the education taught you.”

Carolyn Myss

I have heard from multitudes of people that the year 2016 has been if not difficult, disastrous.  As I heal and enter into my next phase of working to bring another angel into this world, I realize that for me the year 2016 has come with many ups and many downs.  I have had some of the greatest moments in my life and honestly some of my worst.  I am truly trying to find the lessons that both the difficult times and amazing times have taught me.  With that said, I am going to share with you my New Year’s Resolutions.  I will also write down my very personal News Years resolutions that I do not want to share with the entire world, yes there are some things I do keep to myself and my close friends and loved ones.   However, I do want to share some of  my resolutions for all my readers to read in the hopes that some of you can relate to certain changes.  I know it is not yet Christmas but I feel that we can and should write down and think about resolutions many more times than just on a drunk filled holiday we call New Years.  So, here is what I have been thinking about regarding change, lessons, and things I would like to work on today and tomorrow and for my upcoming year as well.

1. I am what one would call an over thinker, a worry wart, and a person who logically knows things work out but find it very difficult to turn my brain to belief instead of worry.  I do not know what came first: anxiety or chronic pain.  I believe I have had anxiety since I was a very small person and following my bike accident and subsequent chronic pain this anxiety only intensified.  Anxiety and chronic pain can become a vicious cycle.  Anxiety increases pain and pain increases anxiety.  I am going to truly work on changing my thoughts.  Once I begin thinking something that worries to me to no end such as the troubles we have faced having another child, I go into catastrophic mode and start thinking months, years into the future wondering what will happen, when it will happen, how it will happen, and then the what if’s come in which are much more daunting than the what’s.  What if’s are two words that I am cognitively going to start deleting from my conscious mind and my vocabulary.  I need to keep remembering and plan to write this down where I can see it every day this: “Everything I have ever dreamed of happening but have been caught in fear that it will not happen always ends up happening just not how I planned.”  I am going to practice following my dreams but not forcing my dreams.  I need to allow things to come into my life with open arms instead of worrying that my dreams will not come to fruition.  Like the saying goes: worrying is like paying interest on a debt you will probably never owe.
2. Comparison is so called the thief of joy and I find myself comparing myself and my life with other’s which is not only illogical but causes me sadness.  As far as I have come in my journey with chronic pain, I still find myself almost annoyed when I see someone in acute pain (pain that will only lasts hours or at most days.)  People with chronic pain would be thrilled to have acute pain however, my reality is chronic pain and comparing myself to other people’s lives steals my inner peace and joy.  I should be applauding myself for how far I have come and what I great life I have despite my invisible illness.  There are many other things I find myself wishing I had instead of being grateful for what I have in this space and time.  Social media has a huge influence on societies personal views on their own lives.  As people look on sites such as Facebook and Instagram they only see the happy moments in a person’s life.  No one posts pictures of the hard times and the sad/difficult moments in their daily lives only the great ones, myself included.  We need to remember this if we are on social media sites.  Many of us would be better off taking time away from the internet if it is bringing sadness and/or distraught feelings.  If something does not make you happy, do not look at it.  We all need to stop comparing our lives to other’s lives whom we think have it all because I promise you if you lived in their shoes for a week you would probably miss your own life a lot.
3. I have started practicing yoga more and have lessened the amount of cardio I do for both chronic pain and anxiety.  For about two weeks now I have practiced a solid hour yoga session each morning and see how much yoga truly touches body, mind, and spirit.  It is not only the poses and exercises I love, it is the words coming from the instructors voice.  I learn a lot of lessons both consciously and sub-consciously as I move through each pose. I love exercise as a result of chronic pain.  It truly helps me a ton and I love cardio more than any other form of exercise.  However, I am trying to work on my inner self more than my outer self.  I never imagined yoga would teach me so much.  I truly believe our school systems should incorporate some sort of yoga into our student’s daily life.
4. I need to chill out.  I become so consumed with fear of the future and thoughts from my past that I forget to live in the present moment.  I used to tell my patients: “Yesterday is history, tomorrow a mystery, today is a gift and that is why it is called the present.” It is so easy to say aloud or even write down: live more presently but it is one of the most difficult things to do.  For example, when you are taking a shower in the morning are you thinking about how great your hair smells in the wraths of shampoo or are you thinking about what you have to do next?  We are rarely fully present and we miss out on so much of life’s blessings and joys because we are always thinking forward.  I have found that if I focus on my breath and calm myself down when I start getting anxious about the future (even if the future thought is ten minutes ahead of me) I can bring myself back to the present time.  My dad asked me for Christmas what I wanted and the one thing that stuck out was a very awesome day planner.  Right now I have like four different ones I use instead of just one go to planner.  I find that if I write down exactly what needs to be done each day I can let go of the thoughts of the future because they are already written down.
5. Finally I need to tap into my faith.  I need to surrender my dreams to the Universe and allow what is going to come into my life to come without worry or grief.  I need to believe, surrender, and let go.  What if we spend all this time worrying and planning our future when the Universe already has it mapped out for us?  If that is the case then we are all carrying around fifty pound weights for no reason.  I plan to truly take one day at a time and some days will be difficult and some days will be amazing but there is some joy in every day.  One of the last presents I gave my Grandmother before she passed was a magnet that says: “We do not remember days, we remember moments.”  I think in this coming year we all need to cultivate more faith into our lives and let go and be lead towards our divine plan.

 

Your Cracks and Scars are What Heal You

“It’s easy to look at people and make quick judgements about them, their present and their past but you would be amazed at the pain and tears a single smile hides.  What a person shows to the world is only one tiny facet of the iceberg hidden from sight.  And more often than not, its lined with cracks and scars that go all the way to the soul.”

Unknown

I am a person filled with cracks and scars that do go all the way to my soul.  For a good part of my life I allowed these cracks and scars to harden me and become a person I did not love or even enjoy being around.  Self hate is truly the most powerful hate there is because it can cause a person to act out in hate towards others when really the only person he or she is unhappy with is themselves and/or their life circumstances.  I am still filled with cracks and scars that are not visible to the outside world however I no longer hate myself.  I can be excruciatingly hard on myself and perfectionism can get the best of me but I do not hate who I am.  I am filled with more self love now than I have had in all my thirty five years on the planet.  I no longer look at my cracks and scars as my enemy but as the building blocks that are creating my present and future.  Life is ten percent of what happens to us and ninety percent of how we respond to it.

This year has been jam packed with ups and downs.  I have had the highest highs and the lowest lows.  I have had miracles arise and devastations arise.  Ten years ago I would pity myself without welcoming pity from others.  I would have allowed the bad things that have occurred to define my identity.  Now, I try and find the silver lining.  I try and find the lesson behind each great thing that happens and each difficult thing that happens.  There are many things that have happened to me to bring me to the place within myself where I reside now: chronic pain, losses, mistakes, and my daughter Kayci.  I have faith in myself and my future because of my cracks and scars.  Look at that little four year old girl above who is just about to see Santa Clause and is literally holding in her built up excitement.  I am the lucky person that she calls Mommy.  She believes in magic and she helps me believe in magic because in my eyes she is magic herself.  One of my biggest losses happened in 2010 when I lost our son at about nine weeks gestational age.  Had that little angel not left us, I would not know or have this miracle daughter.

I had my bike accident in my young teens and have had chronic pain since.  For so many years all I thought about was how to get rid of my pain.  I not only thought about it but pain consumed my life, the life of my family, and a multitude of doctors and specialists who could not for the life of them find a cure to my invisible illness.  A day did not go by in which I did not think about a life without pain.  I am thirty five now and still have chronic pain and had you told me fifteen years ago I would be living with chronic pain naturally and having a fulfilled life despite pain, I would have either laughed in your face or cried in your face.  But, here I am living a life where pain does not dictate my life.  I have written and said this many times but it is just so relevant and true to all our stories: “If there is something that you do not go a day without thinking about or wishing for than you will find a way to achieve whatever it is you wish for.”  I never found a cure to chronic pain but my life took me on a different path where I learned to live with it and be happy despite pain.  In many ways my wish that I did not go one single hour without thinking about did come true just not in the way I had expected it to.  As you all know, I do not go a day without thinking about having another child and extending our family. Clearly it is not happening how I had wished and hoped for it to happen but it will happen because if nothing else chronic pain taught me that you never give up on something you do not go a day without thinking about.   In the meantime I am going to do everything in my personal power to bring me closer to my dream while still enjoying and being grateful for what I do have in this time and place.

Being Judged Because of Chronic Pain

 

“And sometimes I just need to be alone; so I can cry without being judged, so I can think without being interrupted, so I don’t bring anyone else down with me.”

I was recently asked a question if there had been a time in my life where I had been judged because of my invisible illness: chronic pain.  This question was not difficult for me to answer not because I could not think of a time where I was judged for chronic pain but because there have been so many hundreds of times I have been judged due to this invisible illness I could not think of just one.   Even as I write that sentence moments, days, times of judgement and pain run through my mind like a never-ending waterfall of emotions that I cannot believed I survived.  Not only survived but thrived…….eventually.

Following my bike accident and subsequent brain surgery due to a blood clot and TBI (Traumatic Brain Injury) I had half a shaved head, a swollen face, bruises, and scars that took years to heal. I was only thirteen going into the Seventh grade at a new school and three months of recovery was not enough physically or emotionally.  Being the new girl at the age of thirteen is never easy for anyone much less for someone who’s appearance was very scarred.  I was made fun of daily, judged by every classmate except a few friends who are still my closest friends and eventually started eating lunch in the bathroom stall just so I would not feel judged and alone.  Sometimes it is lonelier being around people than it is to be literally alone, which is the loneliest feeling there is.  By 8th grade my hair had grown back for the most part and all of my visible scars had either healed or were hidden.  I tried to fit in by buying the clothes my peers wore and buying the best Acne face wash and slowly I began to make friends.  People no longer made fun of me because I looked: “normal.”  I was young and I had friends to sit at lunch with and people started to like me, the real me, not the outside version.

I had a good year but that did not last for very long.  High School came faster than I could imagine and the physical pain I had felt since my bike accident began to become more consistent and more painful.  I started to get bullied again by certain peers because I was constantly rubbing my face and head without even realizing I was doing so.  The pain was/is located in those places and I was trying to massage to pain away without even knowing what I was doing.  Other people noticed and I was once again made fun of: the freak who rubbed her face all during school.  It was almost like a tic that I could not stop because the pain was slowly but surely taking over my life.  It was around this time that I started my ten year search for a cure to a disease I had never heard of: chronic pain.  I was then judged for making up my invisible illness.  I missed school a lot and spent hours upon hours in doctor’s offices and none of my peers believed me because I looked ‘fine.’  People just thought I wanted attention.  I began to isolate myself from people because it was emotionally painful to have the few people I loved and trusted not believe me because my illness was invisible.  Then I was the girl who was constantly cancelling plans and “lying” about being in pain.  I felt depressed, guilty, and began to believe I was going crazy as no doctor or specialist could help me.  I brought people down and I was not fun to be around.  I did not even like being around myself much less exposing the people I did care for to a version of me that was not me at all.  I was pain: pain was me.

I spent the following ten years being judged because of my invisible illness and even once I hit my rock bottom of pain and ended up at the Pain Rehab Center at the Mayo Clinic and learned how to manage pain naturally, I still was judged.  I was judged by many people for how I lived when I was fighting pain, searching for a cure, and numbing my pain by drinking with friends and then I was judged for living a healthy lifestyle that had little in common with my former life.  I was exercising, practicing meditation, eating well, and no longer had any desire to numb my pain or party with friends.  I lost tons of friends because of my transformation.  I get judged to this day for my lifestyle.  “Why do you need to work out?  You are so tiny as it is?!”  “You never go out and have ‘fun’ anymore, you used to be the life of the party!”  I do not know if it is age or wisdom, but those comments do not bother me at all anymore.  I like me.  There is a beautiful quote that says: “Wisdom is nothing more than healed pain.”

What I have learned over the years is that people are always going to judge you no matter what you do so you may as well do what makes you healthy and happy.  I, personally do not judge others for their actions as I know we are all fighting battles the world may know nothing about.  I will say something if I see someone being judged for their actions, if I have the energy that is.  I have also learned that the more a person judges another, the more unhappier he or she is with his or her own life.   As Abraham Hicks says: “People will love you and people will hate you and none of it will have anything to do with you.”

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.”

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.

Loneliness: Is It Such a Bad Thing?

“loneliness is a sign you are in desperate need of yourself”

-rupi kaur

Loneliness comes in many forms and there is a huge correlation between chronic pain and feeling desperately alone.  Many people (as I once did) isolate themselves from their friends, family, and the world when in the wraths of chronic pain.  Fifteen years ago I spent my days alone in doctor’s offices or in bed crying each and every day away.  I isolated myself for many reasons: I was jealous of everyone who did not live in pain every day of every week, I felt that no one would possibly want to be around someone who was once a fun, energetic girl who turned into a negative, sad, angry person and I honestly came to a point in my journey with chronic pain where I could no longer fake being happy because pain had taken over my body, mind and spirit.  I felt alone whether I was with people or by myself: the latter just took away the fakeness I could no longer muster up for people whom I believed would end up deserting me anyways because of my invisible illness.

I am at a different place with chronic pain and no longer find myself isolating from the world.  I have very close friends whom I can share my truest feelings with, a family I adore, a daughter who is the biggest miracle to ever enter my life, and those random people who come in and out of your life because of where you spend your time.  However, there are times I feel absolutely alone, misunderstood in ways I am not even sure those with chronic pain would understand as I am not sure there is a correlation between my personal loneliness at times and my invisible illness.

I am Jessica and at times I feel I should not only use my name as a noun but as a verb as well.  People always tell me that I am the truest Gemini they have ever met because I am diverse in many ways and beat to my own drum.  To be honest I no longer give a ton of credibility to astrology but there are many commonalities I have with the descriptions of a Gemini.  Not to mention, I did at the age of eighteen get a tattoo of the Gemini symbol on my back: brilliant teenage move, NOT.  I remember when I got the tattoo I was very down and battling chronic pain like a beast attacking my entire being.  I wanted a tattoo and it is true once you get one you tend to want more.  There was a reason I chose my horoscope symbol as my first tattoo.  I had always had a fear of abandonment and my bike accident/chronic pain only intensified this fear, causing me to believe no one I loved would ever stay in my life for too long and because pain was my only hobby, passion, or purpose in life I had no idea what to get for a tattoo.  I decided to get the Gemini symbol because it was one thing I could think of that would never change.  I was born on June 7th and no one could ever take away my birthdate, nor my astrological sign.  As odd as it may sound, I had no identity but chronic pain and I definitely did not want the word PAIN drilled into my skin more than it already was.

As I was working our this morning I looked over at a book I keep on an end table in our living room entitled: Simple Abundance.  I love this book and used to read it daily, highlighting different points that stood out to me and made sense in my life today.  Over the past year or so it has become a book for decoration like the picture frames placed in various places throughout our home.  I was doing a cardio/interval training workout that allots one to two minutes in-between exercises to breathe and drink some water.  During those two minutes I picked up this much needed book that I allowed to turn into a decoration and began reading what I had once highlighted.  Then it hit me, like a ton of soft bricks.  I have been feeling this sense of loneliness because I am not taking the time I truly need for myself.  I am rarely, if ever alone and yet have been feeling this sense of loneliness which is not a common feeling for me.  Then again, my truest partner in crime is my four year old daughter and it is hard to get a lot of soulful, intellectual time when teaching her to swim or coloring in one of her many coloring books.  I would not give any of our time up for the world but I do need to start looking within myself again and work on reading the books that help me in my journey with life and chronic pain and focus on meditation again.  I love the quote above because maybe loneliness is not a horrible thing.  Maybe it is our souls way of letting us know we are not giving ourselves the attention that only we are able to give ourselves.