Our family is no stranger to chronic disease. Lyme Disease is a whole different ball game. It is very difficult to wrap my head around invisible diseases. I see my daughter as a beautiful, wonderful and vivacious young woman. Lyme Disease is often called “The Invisible Illness”. I have also learned that people with Lyme Disease will protect everyone, especially their loved ones, from the symptoms. So, I warn you…..appearances are deceiving. ‘Lymies’ will ONLY allow you to see what they want you to see until it is absolutely impossible for them. Now, try to wrap your head around that and let it soak in. I never knew the full extent of this disease until Lindsey was diagnosed. Honestly, I became terrified and tried my best to hide it from Lindsey. She was too smart for that! lol
As a mother, it is hard not to try and ‘fix’ or ‘make better’. Nope. Not this time. Not going to work. I will share a few symptoms Lindsey has shared with me. 1) Imagine your loved one telling you they were driving (to a place she drove on a daily basis) and got lost. 2) Imagine being told, “Mom. My brain was swelling so bad. I thought my head was going to explode.” 3) I passed out at work. 4) I stood up and fell to the floor. 5)Her neck was SO hot to the touch all the time. 6) Imagine getting to the airport and realizing you are both at the wrong gate because your child is so confused and you didn’t realize it. These are a few minor symptoms Lindsey allowed me to see. Those symptoms were not minor to this mother. This disease is unimaginable. So many days and nights silent tears would fall while I was on the phone with her. My heart actually hurt. I have been told there will be some things I will read on this blog that I know nothing about. Okay. Kleex on standby. lol
I gave birth to Lindsey and she arrived with an unbreakable will. I tried to break her will as a child and teenager. Thankfully I failed. I literally thought raising Lindsey would be the death of me. lol She is stubborn, hard headed, independent and determined. I call these qualities attributes now and they have paid off BIG time in her fight against Lyme Disease.
People suffering with Lyme Disease need and deserve a fantastic support system. I am not referring to just the medical staff. Although, medical staff who understands Lyme is imperative. A support system should not exclude anyone who will put words to actions. Allow me to explain. Don’t wait for a person with Lyme Disease (especially during treatment) tell you what they need. If you think they need something don’t ask, JUST DO IT. They will either thank you or forget being mad (sorry Lindsey) at you for doing it. So many times Lyme patients don’t need to be left alone during the darkest days of treatment due to the herxing.
Develop a support system that can be called at any time. Support systems are vital to not only the Lyme patient, but also a huge help to the immediate family. I can truly say when Lindsey’s husband said his vows for better or for worse he never saw Lyme Disease in their future. Aaron has been by her side every moment. I can not even begin to brag enough on him. He has held her hand, wiped her tears, administered IV medications and fluids, oral medications, cooked and cleaned. He has dealt with more vomit than I did as a mother to all THREE of my girls put together! Aaron is worthy of a crown in my eyes! I love him as my own child. I have witnessed the love and concern he has for my Lindsey. Then there is Joi. Joi is a business partner to Lindsey, but more importantly her best friend. There is no other person on this planet that could tell Lindsey the right side of her face was drooping and they both bust out into laughter. Those two share a special bond. I actually call Joi my fourth daughter. Joi has witnessed far more symptoms than I have. Joi once told me she thought she was going to watch her best friend die right in front of her. I knew in that moment that things had gotten really bad. When Joi said she was afraid to leave Lindsey by herself….we went to our support system. We called Joel. Joel had begged me to call him anytime because he wanted to help. Joel went and sat with her on many days and we are so thankful for him.
I wish I could clone Aaron and Joi for every person battling Lyme Disease. I’m not quit sure this mother could have made it without them. I am so thankful I share Lindsey’s support system with them, as a good support system is vital in the recovery when dealing with Lyme. So, if you are dealing with someone you love battling this disease…….build a support system. Stay in contact with each other so you all know the best needs of the ‘Lymie’. Know that they can and will win this battle with Lyme. ~T.J.