Today has been a hard day, well, actually, it has been a hard few days. Mark has switched to antibiotics to treat his lyme disease. We both knew it would be hard, we knew he would herx and we both knew it would suck. Like most things in life we just didn’t know how bad. There are still moments every once in a while when his day is a truly good day (his gut is stable, swelling and joint pain gone and his memory is clearer). While these moments give us a breath of fresh air, they also play with our minds. A moment of relief can sometimes make us feel crazy as we toss back and forth what made the difference in the moment. Was it less humid, was it warmer, colder, did we use the air conditioner, was it something he ate or didn’t eat.
Then we enter back into reality as his pain comes rushing back to his body. The problem is you cannot see his symptoms on the outside. Prior to his diagnoses there were days we would both wonder if he was just lazy. Mentally and emotionally it was tearing him apart as he struggled with not providing for his family or having the energy to function.
The moment we stepped into the Dulcimer clinic in Fairmont, MN was a breath of fresh air. We checked in at the front desk, told them who we were seeing and why and they didn’t look at us like we had two heads. We talked to the nurse and described some of this symptoms and she would add to the symptoms saying, “when that happens does your body do this or that” and we would say, “why yes it does”. They had names for some of the things his body does or doesn’t do. We finally felt heard. The day we found out he had lyme disease, we both cried out of joy. For the first time we both knew Mark was not lazy, he has lyme.
Mark’s muscles have grown weak, his joints hurt and he struggles with short term memory loss. It is as if he has early onset Alzheimer’s. We have chuckled at the concept of how many of our arguments have been because he literally does not remember the things I tell him.
It breaks my heart because rather slow down, sleep and allow his body to heal. He pushes through because the shame he feels inside about not being able to provide for his family like he “should” weighs heavily on him. He watches me go to the pool, kayaking, eat whatever I want to and living a “normal” life and it tears him up inside. One of his antibiotics causes his skin to react to the sun and his skin could blister immediately if it is exposed to the suns rays. He wants to pull up his laces, but he is too tired to care they are untied or if he has any at all. Mark does not have good days, he has bad days and worse days.
What has given us the ability to continue traveling the journey is our close relationship with God, as well as our family and friends. So many people have rallied around us and have given us support. A few months ago God gave me a picture that still brings me to tears. The vision was our family and friends standing in a circle around us. Some face into us and some face away from us. The ones facing us are to cheer us on, to remind us how much God loves us, they remind us it is ok to not be ok, they remind us to slow down, sleep and rest. The ones facing away from us are protecting us. Both play a very important role as we go through life right now.
I have never felt such peace going through something horrific as I have in this moment in my life. To those who have sat in the trenches with us, loved us, cheered us on and continue to uphold us in your thoughts and prayers. Thank you!