My Story: You Are Not Alone

My Story: You Are Not Alone

Nobody wants to get hurt. We don’t grow up dreaming of popping pills or waiting for our Social Security disability check to arrive so we can afford more doctor appointments and more medicine.

No, just the opposite. Most of us desire to live a very healthy and happy life. We dream of meeting a suitable mate to marry and have kids with. If we’re lucky, we get a college degree and have a career we don’t hate.

Unfortunately with chronic pain, our body doesn’t like to work with us. It does the opposite of what we ask of it.  So, the question is: What are we supposed to do?

Rebecca Wickens

Rebecca May

If you are like me, the answer is: Live life to the fullest regardless of age.

I became ill at 31 and didn’t lose control of my mobility until last year at age 39. I pretended it wasn’t really happening, even though I endured partial wrist fusion and denervation surgery. If I didn’t talk about it, then no one would know. If people didn’t catch on, then they would think I was normal, right?

Wrong. Most people who know us sense when we are in pain.  Tell-tale clenching of my jaw and balled fists are dead giveaways. But we want to be a part of things. We want to play with our kids and grandkids, and enjoy the activities we always took part in.

But what if we can’t?

Dust off that cane or wheelchair and get out there!  These silent diseases are so isolating and it’s easy to slip into a pattern of loneliness and cyclical depression. Don’t give up.

What can you do? Do your eyes still work? There are many uplifting and inspiring documentaries and movies that can motivate us to get up and move forward.

Meditation is something we can do that doesn’t require movement or the threat of self-injury. Quiet your mind and visualize yourself ANYWHERE you want. Focus on your breathing. Think back to the time when your body worked for you and draw upon those memories.  If your hands still work, jot it down on paper in the form of written word poetry.

You’d be surprised by how your shared experiences can help others in pain get through their difficult time.  I volunteer at a local nursing home and give manicures when I can. I get to help others and focus on something other than my pain during these visits.

I’ve been an active member of chronic pain Facebook groups where people share their experiences with each other in an environment of mutual understanding and support.  Reading and writing these supportive comments and articles gives me strength and provides a venue for sharing to help others.

Out in the real world, it’s rare to find compassionate peers who also suffer with chronic pain on a daily basis. Sometimes just venting to the world helps us to put things in perspective.

Shared suggestions for maintaining a higher quality of life are usually spot on and quite helpful, and people in these Facebook groups can put you in touch with providers that can work with you and your symptoms.

Lastly, I feel the need to remind sufferers to lean on those around you. They want to help and support you.  Let them give you a foot or neck massage. Maybe their support means a drive to your doctor or just sharing a cup of coffee with you.

Above all, remember you are not alone. Gentle hugs to you.

12_7.jpgRebecca May lives in Poulsbo, Washington with her family. She suffers from Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome.

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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Rebecca May