Hope and Not Guilt

It has been difficult to get motivated to write or do much of anything being that I have been more pain than normal. I am having a flare up that has caused by pain to remain high despite medications. My spasticity has also been high making it very difficult to walk and stand. I do my best to stay positive and not get grumpy or angry. Unfortunately, no matter how hard I work at it the guilt mixed with the pain wear me down and I do snap at those around me. Of course, this causes even more guilt. Learning to let the guilt go is hard but necessary. Flare ups for anyone living with chronic pain, be it from a SCI or an illness like Fibromyalgia, cause not only physical pain, but mental as well. For me it is difficult because it means not being able to take care of my family the way I normally do. It means not being able to do something I love, cook a meal for my family. Heck just getting up, showered, and dressed are major feats. But the physical limitations often lead to feelings of guilt and inadequacy. It is easy to see all the negatives-I can’t make the bed, I can’t get the laundry done, I can’t pick up around the house, I can’t cook a meal, and I can’t… All these negatives creep in over time, but it is important to change that running line in your head to a more positive one and realize that you really do have an illness. When anyone of us get a cold or the flu we take medications to help and allow ourselves to rest. So why is it that we cannot do this when we have a flare up of symptoms? Admitting that I really do have an ongoing illness continues to be difficult, but through prayer and learning to give it to God I have been able to continue to move forward. Changing the” you’re a failure because you can’t… ” story into look at what you are overcoming and continuing to do is crucial. Everyday we have a choice to live, find the positives, and keep moving forward or to focus on all the negatives and give up. We all have a purpose even if we don’t realize it yet.

Published by Denise Rogers

I am a wife, mother, stepmother and grandmother who enjoys spending time with family and friends, crafting, gardening, and I am learning to live with being disabled. In 2017, after my 8th thoracic spinal surgery, I lost all feeling from the waist down as well as losing my proprioception on the right side. This has made it difficult to stand without assistive devices and made it, so I am having to relearn to walk. Plus, I have another uncommon condition called Chiari Malformation Type 1 which also creates balance issues as well as many other health issues. Because of the Chiari and the spinal cord injury, I have been left with severe nerve damage which causes a great deal of pain (5 and greater on pain scale) as well as spasticity, muscle spasms, and allodynia (burning) in various areas of my body. I have endured 8 surgeries on my Thoracic Spine and will probably need more as the drain that was placed will eventually clog and require replacement. Currently, I have a spinal to pleural cavity shunt, which drains the CSF from my arachnoid cysts into my pleural cavity. Professionally, I am a retired Health Care Professional with over 26 years of experience. I have worked in the Public Health realm as well as in Long Term Care and Acute Care. I have a B.A. in Sociology with an emphasis in Social Work. It is my hope that through sharing my personal trials, experiences, and triumphs that I can help others keep moving forward. No matter what life throws at us we can always tell a better story. I know that God is with me and because of this anything is possible. His promise to be by my side every step of the way helps me to keep pushing on even when there are setbacks.

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