As I lie here in bed trying to fight this relapse of my Chronic Lyme Disease, I can’t help but think back to when times in my life were easier. I owned a house on a lake and this was the sight that I woke up to every morning. It’s not to say that I didn’t work hard or have my struggles with money because I did, just like everyone else in the world. I had multiple jobs and then I went to graduate school for a master’s degree so I was always ambitious. When I say that things were “easier” I mean that there was still joy in my life and there was still reward for hard work.
Since my health has deteriorated from this disease, every day is a battle just to survive. Every day for the past six years there has been pain, suffering, loss, struggle, medication, doctors, willpower, effort, tears and the never-ending question of “when will this hell be over for me?” This is a disease that saps away your joy. It takes away your ability to laugh. You know, those deep down, guttural laughs that you share with your best friends when the most stupid joke just hits you the right way and you can’t stop laughing until tears are running down your faces. Yah. Those kinds of laugh-fests. I haven’t done that in a long time.
As the years have gone by, I have learned how to cope with loss. I have gotten a thick skin and built up a wall of steel around my heart so that I won’t get attached to anything or anyone because Chronic Lyme Disease has a way of stealing everything from you. As my balance failed and my body got weaker, I had to give up ballroom dancing. My feet were swelling after every practice and the muscle pain was becoming intolerable after only a one hour session so I knew that I couldn’t keep it up any longer. When my headaches worsened and I had to wear earplugs in the bars, I had to give up playing on my competitive billiards team. The hand tremors were messing up my game anyways and I couldn’t compensate for them much longer anyways. Little did I know that this was going to be just the beginning.
The first major blow was when my health didn’t allow me to continue working anymore. I had lived for my career. No husband, no children, just work…always work. A large piece of my identity was gone. After that, I became too sick to live alone any longer and had to move in with my mother so she could take care of me. I couldn’t cook for myself, couldn’t drive my car, couldn’t walk across the street to the store, couldn’t even do my own laundry. All I could do was lie in my bed suffering and slowly dying.
There was some fight left in me because I was still researching doctors, treatments for my disease, swallowing 50 pills a day, going to doctors’ appointments and doing everything they were telling me to do in order to stay alive but nothing seemed to be working. I was fighting with the insurance companies, fighting to keep my medical licenses, fighting to get on disability, fighting to get my student loans discharged and fighting to stay alive. Through all of that, I often asked myself, “When can I just lie here and be sick?”
Everything took effort. I needed a shower chair because I couldn’t stand up long enough to take a shower. I needed a cane and a rolling walker because I could barely make it to the bathroom which was in my bedroom. My mother fed me my meals in my bed because I couldn’t eat sitting up for over six months. My heart rate was 120 while lying in my bed and my blood pressure was 90/50. If I tried to stand up, I got dizzy enough to pass out. I spent eight months with an IV in my arm so I could run antibiotics into myself twice a day and a nurse came to my house every week to change the dressing. My weight was 97 pounds and my hair was falling out. I didn’t want to see anyone or talk to anyone. My joy was gone.
As I watched my bank accounts fade away, the fear crept in. How were we going to stay alive when the money was gone? I had been the bread winner in the house. I was supposed to take care of my mother through her retirement. I was supposed to be able to provide for all of her needs until the day that she died. What happens if I die before she does? I would lie in my bed at night with my legs cramped up, in horrible pain, my head pounding and the fear clutching at my throat because I was worried about money of all things!
Needless to say, no matter how difficult I used to think my life may have been when I was in my 20’s and just starting out, nothing could have prepared me for life with a chronic illness. I have been blessed along the way in many circumstances. I was granted disability on my first attempt so I do have some money coming in every month. I had health insurance throughout my illness on a COBRA plan and I just switched to Medicare so I never went without coverage. My student loans were discharged which was a monumental financial relief. My mother has been by my side throughout this entire horrific ordeal and without her, I would most certainly not have survived. We have moved to a cheaper apartment so we are saving some money on rent now.
Unfortunately, I am sure that my career is over and I have no idea what the future holds for me if this disease ever decides to let go of my body. I fill my days in bed researching how other women rebuilt their lives after something abruptly ended their careers and I know in my heart that it will be possible for me to start over when the time is right and I am healthy once again. I have been blessed with many other talents than what I simply went to college for so I am sure that I will find another career to be passionate about.
All that is left now is to find a way to laugh again. I have been through my hell and I am ready for an “easier time” to come again. I hope that when Chronic Lyme Disease is through with me, it will leave some joy in its wake.