When I Learned to Make Compromises Because of My Lyme Disease

I’ve always put my family first. I attended every volleyball, cheerleading game and band concert my children had. I played games with them, acted silly with them and rode bikes with them. I genuinely enjoy being with my family.

I started having strange symptoms in April 2015. I had crippling pain in my back, stabbing, burning pain that moved all over my body, numbness and sleeplessness. My oldest daughter was graduating high school that May. This was our last summer living together as a family. Things would never be the same. I wanted to spend every minute having fun and making memories.

Why was this happening to me? Why wasn’t I getting better? I felt like I had the flu 24 hours a day. I had fatigue and muscle pain but was also having floaters and blurry vision, anxiety and panic attacks. My painful joints made it difficult for me to walk, let alone go on a bike ride or walk with my family. Forget savoring every minute, I struggled just to get up every day.

I forced myself to continue to attend volleyball games. I drove to away games and sat in the bleachers, even though sitting made my back pain even worse. I took my daughters shopping, even though I could hardly walk myself from the car into the store. I remember going on a trip to the zoo with my husband and three children. It was miserable. But I wasn’t going to let whatever was wrong with me stop me from being the mom I had always been. 

I fought myself. I fought my then undiagnosed disease. I fought to get my life back. I wouldn’t change who I was as a mom and wife.

But I did change. I started to accept that I really did have something wrong, and that I needed to take care of me. 

I was diagnosed with Lyme disease in March 2016 and waited months to see a Lyme literate physician. During that time, I started telling myself that it was OK for me to miss some moments with my family in order to be there for other moments. 

My youngest daughter had her first homecoming dance in the fall. I was having a pretty good day. But I knew that I would overdo it if I tried to keep up with everything going on that day. So I went and took a nap while my oldest daughter curled my youngest daughter’s hair and did her makeup. I didn’t want to miss it. But I then had the energy and strength to go to the group pictures with my daughter. I had the energy to go and watch her walk into the dance with her group of friends. 

Saturdays used to consist of eating out, shopping, going to the movies and doing family activities. Now I plan ahead. I think about what I really want to do on Saturday with my family and then that is the one thing I accomplish for that day. And I’m OK with that. It’s taken me so long to get to that point. But I would rather enjoy the one thing I do than overdo it and not be able to do things for days after.

My daughter is a cheerleader. I don’t attend the away games. When the games are at home, I choose between watching the junior varsity or varsity games. I know my limits. I’m missing the entire event, but I still see her cheering for a while.

I know that sometimes I have to choose between things. I can’t play a game with the kids tonight and need to lie down. But resting gives me the energy and strength I need to do other meaningful things with my kids. I’m still learning how to compromise with myself. I’m still coming to terms with the fact that my disease is real, and I have to accept my life is different than it used to be. And that’s OK.

My children still love me. My husband still loves me. I’m still able to create memories and enjoy my family. The time I spend with my family is truly appreciated in a whole new way. 

I am thankful for that.

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