DAILY LIVING & MOBILITY

Living Life with A Chronic Illness: Ehlers Danlos Syndrome

Rare Disease & Syndrome

Kathy Tellstrom

How Chronic Illness Impacts Ellen's Life

Living life with chronic illness is beyond frustrating... and honestly, beyond what most healthy people can completely understand. I say this with all the respect in the world. It is simply a reality. Unless you have walked in the shoes of chronic illness... you can not understand the weight of it that one must carry... now imagine  being 13 years old!!!   Ellen told me the other day that her pain has "erased" memories from her. When she tries to think of her childhood... it is a massive blur. She said ... the memories she does have... feel like she is standing beside herself... watching. That is what pain does. It slams into you, knocks you to the ground. It weighs down on you with a heavy that is like no other... It alters your perception, darkens your view, and leaves you cloudy. Day after day ... after month... after year... We keep searching for "help" for her. I pray we can find it. We started having "the talk". Next week we meet with the surgeon. Ellen has already seen the GI and surgeon regarding her ongoing stomach issues. "Plans"  are coming in the form of motility tests in early January while she is inpatient at Children's Hospital.  We have already been told surgery is inevitable. We have started discussing some of the possibilities and what each will mean for her. She asked me if it will take the pain away. I don't have an answer for that... and THAT  breaks my heart. I certainly hope it will. She is not interested in having a bag. She agreed to a resection tonight... as that is the nearest thing to "normal" we have as an option.

At this very moment in her life... she "should" be thinking about her friends, her favorite books and weekend plans. She "should" be completing science projects and looking forward to the next school dance. Instead... she is planning what her life will look like with less of her large intestine... contemplating life with possibly less pain... agonizing over another surgery... fearing recovery time and dreaded time in the hospital. She asked to sleep with the lights on tonight. Breaks my heart.   

#TeamEllen #EDS #EhlersDanlosSydrome  

You can join Ellen's Journey with EDS at https://m.facebook.com/empoweringellen/

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