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Feeling Forgotten

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“Being in a hurry to improve yourself, only slows down the process.”

Unknown

I was recently asked by the amazing site entitled http://www.themighty.com to write about a part of my invisible illness no one else is aware of and why it is time to start talking about it.  When you see the two Jessica’s above, you see just how far I have come in my management of chronic pain. The picture on the right (our left) is right before I entered the Mayo Clinic in MN and learned how to accept and manage pain naturally. This picture was taken about thirteen years ago I believe and is when I was at my worst.  I had spent ten years searching for a cure, trying every medication, seeing every doctor I could find, having surgeries, and finally self medicating by drinking copious amounts of alcohol in Boulder, CO. I no longer wanted to live and I had given up.  The smile on that face is not real.  I was in the worst physical and emotional pain of my life and had truly given up on myself, my dreams, and my life.  Fast forward to the picture on the left (our right) to the Jessica of now.  This picture was taken since my daughter was born and the smile on my face is real.  I am not just surviving in this picture, I am alive.  I have been practicing managing pain naturally for about thirteen years and if a picture can say a thousand words, I believe the above two images show a million words.

While I was in the Pain Rehabilitation Center at the Mayo Clinic I  learned many tools to manage pain naturally.  I was in the program for about a month and although reluctant to accept chronic pain in the beginning of the program, the work and dedication I put into managing pain naturally saved my life, literally.  The hardest thing I had to come to terms with was their lesson to not talk about pain to our loved ones.  The concept behind this is that the more we talk about pain, the more we think and dwell upon pain. It takes tremendous work to bring your attention and mind away from your pain and onto something else.  Talking about pain is what is called a pain behavior: a pain behavior is anything that draws attention to our pain.  I still struggle with two pain behaviors: over-doing it in a way to not think about pain and rubbing my face/head/or back when I start thinking about the pain.  I could not imagine not being able to talk to my dad or my loved ones about the pain I was in.  The program was only a month and yes I came out looking like a different person with a very different mindset than I had when I first entered the program.  I stopped looking for a cure, I stopped taking medications, I stopped drinking, I exercised, meditated, and truly was a completely different person than the person my loved ones knew before I went to the Mayo Clinic.  However, I STILL HAD/HAVE CHRONIC PAIN.   I was working on not talking about pain which was very difficult.  The program taught us to tell our loved ones that we were having a “difficult day” when the pain was excruciating but not to use the word pain.  I agree with this concept and I can honestly say it works because at the age of thirty four I am continuing my success in my management of chronic pain despite never finding a cure.

People have forgotten I have chronic pain and that is what I want people to remember.   The title of my website is No One Gets Flowers For Chronic Pain which of course is a metaphor.  People, who are as fortunate as myself to be able to accept pain and live the life they desire still want support and encouragement.  Many of my readers email me and ask the same question: “How are you able to work when you have chronic pain?  I could never hold down a job with this severe pain?” Many of the people who ask me this particular question are either on disability or have someone who helps them financially as they are unable to work.  I want to be clear. In  my first job as a social worker I worked thirty two hours a week, not the average forty most of our society works.  I did not make a lot of money but I enjoyed what I did, I was able to take breaks to practice meditation/mindfulness, and I worked enough hours to receive benefits. Because of time management and being able to incorporate my tools in managing chronic pain naturally, I was able to be a great social worker. Years later my daughter was born and my dream of becoming a stay at home mom came true.  For those of you who are not stay at home moms, let me be the one to tell you that being a stay at home mom is WORK.  I have spoken to many women who have been both stay at home moms and moms whom work outside the home and I have yet to meet one woman who has not said the following: “Working outside the house is so much easier. How do you do it?  I need to be around adults and just get away from mommy world for a while!  It is so hard!”  The only difference for me in each of  my careers: one as a social worker and one as a stay at home mom is that when I worked outside the home my job was finished for the day.  Being a stay at home mom is the best thing to ever happen to me and I love it with all my heart but there are no breaks.  I think it is very important that our society and those of us who have chronic pain remember that no woman is ever: ‘just a stay at home mom.’ I cannot think of a more important job, nor difficult job than raising a child that you brought into the world.  For those with an invisible illness such as chronic pain the job of being a stay at home mother becomes that much more difficult despite its joyfulness.  Yes, now I am a stay at home mom and writer but I still have chronic pain.  Some days are really hard.  Some days I want to tell the people I care about: “I am in so much pain.  I know I have come a long way but I still cannot do everything you would like me to do because I have to practice moderation and listen to my body if I am going to continue to live in a healthy way despite pain.”  I still get anxious and at times depressed because of pain.  No, I do not talk about it and it happens so infrequently that I do not feel the need to.  However, I want/need people to understand that just because I look so much better on the outside and I am healthy, I still need support and understanding. There are reasons I say no to doing certain things and most of the time it is because of my invisible illness.  There are days I am not the energetic, happy, laughing Jessica because I am having a “difficult day.”  Yes, it has been years upon years that I left the Mayo Clinic and have been managing pain naturally and no longer allow pain to interfere with my joy but the pain is still there.  Sometimes when one stops talking about something, they feel forgotten.  There is a reason chronic pain is called chronic: it never goes away.

When someone loses a loved one they are given flowers, cards, food, and everyone is busy planning a ceremony and for days people comfort the person who has faced a loss.  However, following the funeral and a couple weeks of mourning it is as if the death never occurred.  There are no more flowers, cards, or dinners being made.  However, the feelings of loss the person feels are still there and probably worse than they were when he or she lost their loved one.  Now this person has not only lost someone they love whom they will never see again (so some believe) but have also lost the support and love that was given to them for the weeks following their loved one’s death.  The correlation to this and to chronic pain are extremely similar.  I want and I know those of you who rarely talk about pain and are managing it well want to be remembered and supported.  We still have chronic pain whether or not we talk about it.  We need love, support, and encouragement from those we love.  Most of all we want to be remembered.

 

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