DAILY LIVING & MOBILITY

Living life with chronic illness: Living life with EDS

Rare Disease & Syndrome

Kathy Tellstrom

Through a Mother's eyes

I am tired. I am tired of endless doctor appointments. Tired of bills that aren't covered by insurance. I am tired of applying and reapplying for assistance for the kids. Tired of watching them... try and fail. Tired of seeing them sick and struggling. I am tired of filling syringes of medication. I am tired of trying to explain their invisible illness to others. I am tired of getting that "look". I am tired of not being heard. I am tired of not being understood. I am tired of being tired. Tired. 

I am grateful. I am grateful for my beautiful children. Grateful for each day. Grateful for the little steps that turn into big changes in our daily life. I am grateful for their successes. Grateful for the hugs from understanding friends. Grateful for those who extend their hands and offer their support. Grateful for days at school. Grateful for time with their friends. Grateful seeing them smile. Grateful hearing them laugh. Grateful. 

I am sad. I am sad seeing my kids sick. Sad to see them struggle. I am sad to see them left out. Sad to see them left behind. I am sad to see them in pain. I am sad to rearrange another family event. I am sad to have to cancel another play date. I am sad to have the call from school that they need to be picked up, when only a half hour has passed. I am sad to see their defeat. I am sad to see their isolation. I am sad to see the illness reflected in their eyes. I am sad holding them through needle pokes and IVs. I am sad watching them struggle through procedures and surgeries. I am sad watching them cry from the pain. I am sad not being "enough" when the pain wins and they are desperate for relief. Sad.

I am happy. I am happy for the giggles. I am happy for their sense of humor. I am happy when they get my silly jokes. I am happy for their smiles. I am happy when they can make it to school. I am happy to see them with friends. I am happy to see them try and succeed.  I am happy for one more day. Happy.

I hate EDS. I hate the disease. I hate thinking about the horrific complications of the disease. I hate how consuming this monster is. I hate the days lost... with friends and family. I hate watching them live life from a bed. I hate having to change plans and cancel outings. I hate the unpredictable challenges that arrive daily. I hate having to visit the ER. I hate seeing the look on their faces when the disease knocks them down. I hate not knowing the kids future. Hate. 

I love. I love these perfect imperfect children that I have been blessed to call my son and daughter. I love family time. I love the days when things go right. I love when the pain doesn't win. I love surprising them. I love seeing them smile. I love hearing their laughter. I love waking up every morning to a new day ... a new start. I love these kids. I love.

This is the life of EDS. It is real.

You can follow Empowering Ellen's Journey through EDS by visiting her page on Facebook. Ellen is the youngest of six children, three of which have been diagnosed with EDS. At the age of 13, she is learning to live with the constant struggle of Ehlers Danlos Syndrome and it's complexities. 

https://m.facebook.com/empoweringellen/

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