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.”

Planning a Life Around Pain

“Understanding the challenges you face with your illness and then planning a life despite them, may be one of the bravest decisions you will ever make.”

Unknown

The ups and downs and spins and twirls never truly end when you live with an invisible illness such as, chronic pain.  It took me ten very long, painful, heartbreaking, gut wrenching years of my life to come to a point of acceptance of my invisible illness.  It was not until then that my dreams slowly but surely began to come true.   However, I have to plan my life around chronic pain.  Now, this is not such a terrible thing and with a lot of dedication can be done and one can make the life they desire no matter what illness he or she has.  A month ago I was given the greatest news of my life since the birth of our healthy daughter, Kayci.  I am sure many of you who know me can guess what that news is but I am still waiting to share it with the world.  With this amazing, life changing, news that I have worked towards for two years now has come with some changes in my daily life and how I manage pain naturally.

When I set my mind to something, I do not give up.   That is one of the biggest blessings I received from a diagnosis of chronic pain.  I know that if I am strong enough to manage chronic pain naturally and live a life I am for the most part happy with, I can do anything.  I have to want something so badly that  I do not go a day without thinking about it to put in the effort, faith, and work it takes to make what I want come to fruition.  It may sound silly to some but one of my biggest and most beneficial tools to managing chronic pain naturally is exercise.   Exercise not only helps my pain levels but my anxiety as well.  In order to keep my dream safe, I have been told by my amazing doctors that I  should not work out for now as I just got over being on bed rest.  It has now been over a month since I have been allowed to exercise and it has taken a toll on me.  However, I keep reminding myself of one of the greatest quotes I have ever heard: “At times you must give up what you want now for what you want the most.”  It has been an adjustment but I just have to plan my life differently for now just as I have done with my management of chronic pain.  I have had to find different things to do in the morning when for thirteen years I have gotten up and worked out right away to keep my brain to going straight to pain and to get my body moving.  I started a gratitude journal six weeks ago where I write down five things I am grateful for each morning.  I have had more five am snuggles with my beautiful daughter and spent very real time with her just talking as the sun comes up.  I am trying hard to practice more yoga nidra and meditation.  I am finding other ways for the time being to manage chronic pain and re-arrange my schedule to keep my dream safe and sound.

Whether or not you have an invisible illness, there are going to be times when life does not go as plan and random road blocks are going to stand in the way of what you desire.  You have to keep going and find different routes and avenues to take to get to where you want to go, to make your dreams come true.  “At times you must give up what you want now, for what you want the most.”  I have used that quote in my management with chronic pain when pain is so difficult I have a small desire to go back to pain medication and I use it for other life changes that arise in my life.  I believe in all of you and all of your dreams.

The Benefits of Not Pushing Pain Away

“If we stay present with the rawness of our direct experience, emotional energy can run through us without getting stuck.”

-Pema Chodron

I took this picture of my four year old daughter this past Sunday as she was watching the world go by in the comfort of our den.  I spent a great portion of my own childhood in the home that my family resides in now.  My grandmother who has become an angel helped raise me in her home along with many other family members.  I have so many amazing memories in the home I spent so much of my childhood and am now raising my own family in.  With great memories come some difficult ones as well.  I had fear of abandonment growing up and this fear manifested inside me into adulthood partially because of chronic pain and partially because I repressed so many painful memories and just pretended nothing bad ever happened to me.  To be quite honest and for those who have chronic pain will understand this, once I had my bike accident in my young teens that resulted in brain surgery subsequent chronic pain, my invisible illness took center stage in my life.  I was in therapy to learn how to either find a cure to pain or manage it naturally (pending on the time period in my journey with this invisible illness) not deal with the issues I had faced in childhood.  The same window my daughter is looking out of with sparkles in her eyes is the same window I sat at waiting for my dad to arrive home from work the days my Grandmother (La La) watched me.  He worked extremely hard to take care of me, provide for me, and be the best dad in the world at his very young age.  I used to cry each and every time I went to a different family member’s home or someone watched me that was not my dad.  He was my one constant in life and the one person I knew would never abandon me.  The mornings he left for work and I stayed with my La La, I would run from window to window of the home I reside in now listening for the beeps from his car and his waves goodbye.  I knew deep down that he would always come back but as an adult looking back I can now see there was some deep rooted fear that he would abandon me.  I remember one time he went away on a business trip and had to fly to get there as it was too far away to drive to.  On the day of his return I was staying with my Grandfather, Pop Pop and I watched the news for hours making sure no planes had crashed.   I never want my children to have the fear of abandonment and I make sure my daughter knows that I am her constant and she never has to worry about mommy not coming home.

That fear of abandonment only intensified with chronic pain.  I spent ten plus years searching for a cure to chronic pain: surgeries, medications, procedures, massage therapists etc etc .  The times I was not isolating myself from the world because I was in too much physical and emotional pain to face anyone, I was trying to fit in with my peers by drinking with them but to an annoying point where I wasn’t fun to be around.  I always ended up being the ‘crying drunk girl’ by the end of the night because all I could think about was pain and alcohol, as much as it did numb my pain for a brief time only caused me to focus more on pain and increased my already depressed mood.  Over time, people just stopped wanting to be around me and/or I stopped wanting to be around anyone but myself and my pain.  I wish I knew in my teens and twenties that the people who truly love you will never abandon you: chronic pain or no chronic pain.  I still have the same two best friends I have had since I was in my young teens and they have both stuck by me through chronic pain and the ups and downs of my journey.  They both are two of my biggest fans and are very supportive of my choice to manage pain naturally and follow my dreams of sharing my story to save others and to have children and extend my family: two things I truly believed chronic pain had stolen from me.

I am facing a joyous yet trying time right now and I will share what that is in due time. I am currently on bed rest for a week and once again forced to let go of many of the things I use to manage chronic pain, forced to deal with my thoughts, and cannot constantly distract my mind from this yin/yang experience I am going through.  I will say this: the good of what I am facing outweighs the bad in more ways than I can express.  I am grateful for the blessings that are coming into my life despite the difficulties that sometimes come with our truest dreams.  I do not want my emotional energy to get stuck as it has in my thirty plus years in this world.  I do not want to dwell on my problems but I also do not want to resist them.  I must acknowledge and accept what I am facing or problems will manifest deep down in myself and come out at a time when I do not want them to or expect them to.  It took acknowledging and accepting chronic pain without resistance to finally find peace and happiness.  That is a huge lesson I learned from my journey with chronic pain and now need to utilize in the other parts of my life.  Pain does not define you and there are many life lessons we can and will learn if we allow ourselves to be open to the possibilities of non-resistance.  Anything we bury down deep and try to repress will get stuck and I have learned that in order to have a peaceful, happy life we must not repress our feelings or emotions especially those of us with chronic pain.  Personally, the more I repress emotional pain, the more physical pain I am faced with.

 

People’s Reaction to my Invisible Illness

“When I loved myself enough I began leaving anything that wasn’t healthy.  This meant people, jobs, my own belief’s and habits-anything that kept me small.   My judgment called it disloyal.  Now I see it as self loving.”

Unknown

I have had a multitude of various reactions from people when I tell them I have an invisible illness: chronic pain.  I never tell people for pity or praise, I only tell them because they ask me what I write about.  I have yet to meet a person with chronic pain who enjoys being pitied.  It is bad enough when we, as individuals get in self-hate or self-pity mode, but to watch others pity us is just agonizing.  I was asked yesterday during my daughter’s dance class what I wrote about and my story regarding my bike accident.  The woman whom is beyond kind was genuinely interested and even asked me to send her a link to my site.  She had one of the greatest reactions to my story that I have ever encountered from a person who had no idea I lived with chronic pain.  She stroked my hair but not in a “I feel bad for you” way but in a way that said: “You are amazing.”  It is very hard to explain but sometimes gestures and eye movements are more meaningful than words.  She was one of the first people who genuinely wanted to read about my story and ask me questions that did not make me feel uncomfortable or different from anyone else in the room.   There was no pity in her eyes, just empathy.

I showed her a picture of myself when I was at my rock bottom in my journey with chronic pain.  It is very similar to the before and after picture seen above.  A lot of people who have met me in the past ten years do not believe the Jessica on the right in this picture is truly me.   I can promise you all that it is.  Chronic pain was at it’s worse and I had already gone through every doctor, specialist, surgery, and medication to try and cure my relentless pain.  Nothing worked.  Ten years of searching for a cure can really suck the life out of a person.  The only thing that actually numbed my physical pain for a brief time was alcohol.  I ate horribly, drank with my friends on a nightly basis, and spent the days crying in bed.  Pain had completely taken over my life: body, mind, and soul.   I look at the picture of the Jessica who was falling apart due to chronic pain and I sincerely do not recognize her.  My friend from my daughter’s dance class asked me if I feel like I am still that person seen above and I honestly feel no identification to that Jessica at all.  Chronic pain changed me, how could it not?   For the first ten plus years in my battle with chronic pain, this invisible illness changed me for the worse.  I do not hate the Jessica I once was because I was doing the best I could with the cards I had been dealt.  I was so unhappy I thought about ending my life more times than I care to remember.  I may have been bigger on the outside but I was totally hollow on the inside.  The Jessica I found through the help of the Pain Rehab Center at the Mayo Clinic is the true Jessica seen on the left hand side of this picture. She is happy.  I wish I could say chronic pain finally went away or I found that magic cure but I did not.  I found a way to manage pain naturally and work my ass off on a daily basis in order to never feel the way I felt fifteen years ago.

It took me a long time to love myself.  After my bike accident I hated chronic pain but I did not hate myself.  After years and years of searching for a cure and becoming hopeless and a total mess inside and out, I began to hate myself along with the pain.  I empathize with the Jessica seen on the right hand side of this picture and wish I could give her a hug and tell her everything would be okay one day.  I would never have believed the older Jessica but I would still love to give that younger pain filled Jessica a hug.

The friend I have made at my daughter Kayci’s dance class embodies a presence of love and empathy and I truly hope that with my stories and writings people begin to see how a person with an invisible illness wants to be treated.   She made me feel good and she clearly knows the difference between pity and empathy.  That is a rare quality to find in a person and I am very happy to have bonded with her as I have.

 

Self Reflection and Chronic Pain

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

Osho

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

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

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

 

 

 

 

 

 

Being Judged Because I “don’t look sick”

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

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

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

White Noise

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

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

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

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

Feeling Buried Alive: Chronic Pain

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

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

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

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

Guilt and Chronic Pain

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

Unknown

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

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

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

Working With Chronic Pain: My Biggest Mistake

Where do I go when I am faced with life’s biggest questions or when I am in the middle of an invisible argument going on inside my mind: the beach.  I am able to think and find my answers to life’s biggest struggles when I am right in front of the ocean. We live about fifty minutes from the Jersey shore and it remains my place of peace and where I go when things in my life seem to be unravelling.

My biggest fear when I left the Pain Rehab Center at the Mayo Clinic in Minnesota was how I would be able to work with chronic pain?  I truly did not believe I would be able to be a social worker when I was managing pain naturally and had this intense routine I followed daily to manage my pain without it managing me.  I spent about six months or so not working once I left the Mayo Clinic and used this time to truly focus on my health and management of chronic pain.  Every day I followed a schedule and eventually I did not focus on my pain as I once had and happiness started to truly enter my heart and soul.  I felt alive for the first time in twenty years.   I was exercising, practicing meditation twice a day, taking walks, reading, and finding all the things I thought I had lost because of chronic pain.  It was the happiest I had been since I had fallen off of my bicycle in my young teens.  I was thriving despite chronic pain.

However, I was a college graduate with my degree in social work and knew I had to start applying to jobs in my field after my six months of getting my chronic pain under control.  I was terrified.  I knew I could not do a forty hour week but I needed health insurance so I had to make sure I worked at least thirty-two hours a week.  I was so afraid that work would take away all the progress I had made in my management of pain.  I went on an interview at a place called Senior Care which was a medical facility that had patient’s who suffered from Dementia, Mental health issues, Cancer, Autism: you name it.  The job seemed amazing and I loved the facility.  During my interview, I was honest with my soon to be boss and explained that I had chronic pain but was managing it naturally.  I told him that I would need about two breaks a day and he was very impressed with my honesty and how I managed chronic pain as many of my soon to be patients also had chronic pain.  He then began asking me questions on how I managed pain and if I would be able to teach some of the patients the techniques I used such as meditation.  BINGO!!!!  I was pumped.  I wanted to just tell my future boss that I would take the job and start the next day but then fear crept in and I asked him if I could have a couple days to think about the position.  The following day I drove to the same beach seen above by myself with my meditation CD’s, my books, and my journal.  I sat on this very same beach where years later I would be holding this precious daughter of mine and just asked the Universe if I should take the job or not.  My intuition was so strong that I really did not need to ask anyone their opinion.  I knew I wanted this job and after eight hours of sitting on the sand in my favorite place in the world I drove home and called my soon to be boss and took the job.  My intuition was right on point and I loved my job.  I was able to incorporate my chronic pain management tools into my career,  I was helping people and making a difference, and I was proud of myself.  It was the greatest job I have ever had so why did I leave?

One downfall of my job was that I made very little money and my health insurance was pretty bad.  Out of the blue one day, I received a phone call from a different facility asking me if I was interested in interviewing for the Director of Social Services at one of the most famous nursing homes in our area.  The Director was offering about twenty thousand dollars more than I was making and my ego took over and I agreed to be interviewed.  I was managing pain amazingly, I was in a great place: mind, body, and spirit so I thought: what the hell, may as well at least go for an interview.  Here is where I made one of the biggest mistakes in my career: I took the job despite my strong intuition to stay where I was not making a lot of money but I was healthy and happy.  I gave my two weeks to my dream job and began working as the Director days later.  By the end of my first week at my money making, high profile social work job I knew I had made a HUGE mistake.  I was working over forty hours a week, no breaks, no time with my patients, no time to incorporate my chronic pain management tools, and my self esteem began to spiral downwards as my pain began to increase by the day.  I was miserable, filled with regret, and in tears every night of the week.  Weekends were no longer fun because I was no longer taking care of my health five days a week because I chose money over my health and happiness.  Within a year of my twenty thousand dollar mistake, I found out I was pregnant and gave my two weeks notice.  My boss was not a huge fan of me anyways as he told me on a daily basis: “Jessica, you are just not a good sales person.  We need our numbers up.  We need more people who will pay privately.  Your focus needs to be on our facility.”  No, I am not a good sales person, I could not agree with this person more.  I was a social worker.  I hated sales, I hated shopping, and I went into social work to help people not make a business money.

Chronic pain has taught me more lessons in my life than any other ailment or event has.  This was another hard lesson I had to learn.  If I could go back in time, I never would have chosen money over my health and happiness.  I would have followed my intuition and stayed in the job where I was making little money but I was not only making a difference in my health but the health and happiness of those I worked with.  I did not go to the beach seen above when offered this twenty thousand dollar mistake.  Lesson learned.  There is nothing in this world that is more important than your health and happiness.  If you are lucky to find a job in which you are able to manage your invisible illness like I was able to find, do not leave no matter what!  Do not make my twenty thousand dollar mistake.