By Ellen Lenox Smith.
Each day living with chronic pain, is not always like the day before. Many of us can tell, as soon as we awaken, which direction the day is heading. On the days one feels clear headed, we begin that day with a smile. On the days that we are in a flare, it is difficult to determine where the strength is going to come from to get out of that bed, think, feel and act with purpose in life. However, managing each day with a degree of pain, perhaps anxiety and yes, sometimes despair, is something we have to learn to cope with. And without attempting to address this, we may very well find ourselves overwhelmed with our lives controlled by our condition.
I happen to deal with two conditions. One is called sarcoidosis, which presently is causing granulomas and enlarged lymph nodes in the lungs and can potentially spread at anytime. The other condition is called Ehlers-Danlos Syndrome, a connective tissue defect that allows movement of the bones, called subluxations, to occur easily. The pain is not pleasant and many times comes on seemingly out of nowhere, often from such simple and basic tasks as reaching for a box on a high shelf or, twisting the wrong way, getting hugged, bending without using the knees, lifting more than five pounds, or just doing anything repetitive can cause the frame to shift. When things shift into this negative mode, along with it comes pain, insecurity, heartbreak, disappointment, and awareness that this will not suddenly be over, but will take time to settle down often requiring extra physical therapy treatment sessions, along with allowing time for the added inflammation to calm down.
When I have to deal with the more unpleasant days, I not only fight the physical discomfort but also the emotions that can quickly slip back to a rather negative mode feeling like this will never be over. When I get a flare up, the body becomes inflamed and the damage continues to happen until things calm down. This process can take anywhere from forty-eight hours to a few weeks, or more. The mystery of not knowing how long you have to go through this does not make acceptance easy.
Emotional Damage from living with chronic pain
I don’t know about you, but when you have all these fluctuations in your physical condition, which can impact your social life, your emotional state and your overall sense of well being. The psychological challenge can prove intense and draining as you never know how much better you can get. There starts to be evidence of emotional damage. I try so hard to remain positive, to do what needs to be done to correct the issues, including being careful with what I eat and getting to manual PT to correct the positioning of the body but that is not always enough and often doesn’t feel like it works fast enough. As human being, discouragement and disillusionment are part of the human experience, these feeling are common to all of humanity but for those suffering chronic pain and or disabling conditions, these feelings can at times prove so intense and insurmountable that they can penetrate one’s very soul and this is frightening. So, when the emotions creep into the soul I question if this is a return to my worse state, if this might lead to another surgery, or wondering how long I will be in this less functional and painful state. I often find I become so disappointed in myself for allowing these emotions to take hold of me like this. But when we are physically weaker, hurting more and feeling discouraged, we have the human reaction that weakens our strength and soul. I have found, now having to have coped with twenty-four surgeries, that the emotional reservoir that I had when healthy and was able to easily tap, has been somewhat drained. The emotional strength to confront the challenges of two chronic incurable conditions is not always available. I can go from feeling strong, positive and happy to becoming scared and in a fog emotionally.
I try hard to find things that bring a smile to my face to lighten the feelings that creep in. A simple conversation with someone that cares about me, hugging and petting my service dog, admitting and discussing my concerns with my husband, taking a ride in the car, exercising when possible, writing and expressing my emotions or taking on a form of advocacy and especially reaching out to someone else also struggling with life issues are some examples that can work for me. If I can find a way to fill that void I feel, it goes a long way to help me figure out how to deal with the emotions that are trying to penetrate or invade my soul.
I hope that you are able to find outlets that help you manage your emotions in a way that allows you to feel a sense of more control of your life. We may not always be capable of managing our physical symptoms but we all need a plan to find the positive in life. Being grateful for the good things still in your life can have a positive impact and can help lead to more hope. It also helps to appreciate those better days or even moments, along with helping to work to get control back on your emotions. May you find the strength to try to remain as positive as you can and live life with hope.
May Life Be Kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/