Every two months we travel from Minnesota to Wisconsin Dells to see my LLMD. We try to go on a Saturday and then have Sunday to rest (or play in the water for my family) before we see my doctor on Monday and then travel home. Since Wisconsin Dells is known for its waterparks, that’s usually where we end up on Sunday.
Today we are spending the day at a very large indoor waterpark. I would love to be playing in the water or exploring the water slides but the disease prevents me from doing this. Who am I kidding, the climb up many flights of stairs to get to the top of the water slide would wipe me out! But before the PICC line I would at least enjoy floating at the edge of the pool or have my husband give me a piggy back ride around the pool. But now, with the PICC line, I am too afraid that one mis step or slip and my arm would get in the contaminated water. So I am a content to sit in a comfortable chair on the side of the pool with my ice pack. But that being said I am feeling like I am a voyer to my own life. I sit and watch my husband and daughter play for hours in the pool and I am devastated that I can’t be a part of that. I feel like I am missing out on so many moments. I feel like I am blending into the background because of this disease! I am so mad that this is what my life has become.
Most of all I miss the connections with the people I care most about. I want off the sidelines! I want my life to stop being blocked by Lyme disease!!
I know what you are talking about! I have taken to being the videographer of many of our adventures. Gives me a part in the fun, and we can capture memories.
I love you. Heather, and am holding out hope that better days are ahead — including ones spent in the pool.
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You are a treasure of a friend Aimee!
I found your blog while researching lyme on a very bad day. It’s as if you are writing everything I have been feeling. I too am being treated for lyme. Before that I was diagnosed with cfs/fibro. I have pretty much been housebound for 2 years and now I seem to be getting even worse on treatment. I have 3 little girls under age of 5 and I know what you mean by watching life and not being able to participate. Only 2 years ago, I was a social butterfly, hosting parties and play dates, taking them on long walks, shopping, and to the park. I knew I was blessed, but you never realize how much until it has all been taken away. Now, I watch the babysitters I hire play with them, take them to play dates and activities, when it should be me. I pray for all of us who have this devastating, controversial disease. Thank you for your words!
Thank you Lesley!! Wishing you healing and strength to fight this disease!!