Love and Scrabble: My Struggle with Chronic Illness

As I sit here playing Scrabble with my daughter, I am thinking of all the time that I have wasted. Quality time that I could have been spending with her, my son and my husband.

Time spent fighting Lyme Disease and Pre Menstrual Dysphoric Disorder, among other chronic illnesses.

I am surrounded by lettered tiles, a smiling daughter, and much regret. The cardboard box says “when you play games, everyone wins.” I have not been winning the last three years, I have barely been in the game. But, I will fight my heart out to get back into the game. I will fight my heart out to be there for my family once again.

As I was struggling with Lyme Disease, I overlooked the damage that PMDD was doing to my body and brain. I had not taken my diagnosis seriously, and blamed all of my symptoms on Lyme Disease because Lyme Disease has many intolerable symptoms. What I did not realize was that most of the rage, imbalance and panic that I felt was caused by PMDD.

As soon as I learned that the only cure for PMDD was surgery, I signed up. I had a hysterectomy and salpingo-oophorectomy. This decision was not taken lightly, and anyone considering it has to consult with many doctors, try a few other treatments, and do an enormous amount of research. There are many risk factors and no guarantees that the patient will feel better, but I was ready to take my chances.

My lowest point was being a prisoner in my house, in my own body. Grasping onto the couch for dear life as the anxiety and panic consumed me. Seeing my kids but not being able to play with or enjoy them. Letting them down constantly. Not wanting to be stuck in that prison anymore. Oh how I love my family, that’s why I kept going. That’s why I had surgery as soon as I could. That feeling of doom is gone, the towering prison walls are gone. Only anxiety remains. I will overcome that too.

I feel more hopeful now. The board is full of endless possibilities. Words float around like jubilation, contentment, and survival. Glorious text that I gleefully place on our Scrabble board, glad that it supplants words like despair, indignation and trepidation.

My daughter’s eyes sparkle as she looks at me. Oh how I have missed that look. She is pleased to be able to spend time with her Mama again. All these years she has needed me, I was unable to truly be there for her. She never gave up hope though. She never stopped loving me.

She laughs as she spells the word bunny. Her many freckles frame her beautiful face. I will notice these freckles more now, I will try to make up for lost time.

So many thoughts enter my mind as I sit in our kitchen. What words will I now put on the table? I will choose them more carefully. I will teach my children that words matter. That they are a reflection of who we are. That they can hurt, help or heal.

I will work hard to gain my strength back, to use my words to help bring my family closer, to help others who may need to hear them.

I have a long way to go, but I’m glad that I’m going in the right direction. The Scrabble board is in use again. My mind and body are regenerating. The words will keep flowing.

My life continues. The love continues….

Kathy ❤

Poetolgie

 

 

 

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