Or do you just figure that if you pour more energy into the equation, the problem will go away or a miracle will occur. What if it doesn’t? Do you just divert more energy to it? Even the Energizer Bunny wears down, and that is why he takes a commercial break to insert new batteries and recharge. So I have learned that if you have heart failure, you may need to take periodic breaks to recharge. Because otherwise you may have to pay the freight for ignoring signs of the wear and tear, or the deterioration, of your heart. I expect that this same advice also is followed by a number of people who are diagnosed with chronic illnesses.
I decided it might be useful to continue to keep the pause button on for the next few posts. So I am pausing the story about the events that led to my health issues and the treatment plan that followed. I am going to continue for this and the next post to focus on some recurring themes I have noticed in the last three years.
First, you will recall some comments that I thought I was getting some signs from God that I needed to slow down and re-prioritize my life. Even now, I sometimes joke that if God had wanted to give me a sign, I would have been equally, if not more, responsive to a message delivered by way of a burning bush. But deep down I know that this is not true. I believe I saw myself as invincible. This belief made me continue to notice numerous danger signals but to not give them serious consideration, apply caution and perhaps reevaluate my actions. I do not think I am unusual at all in this regard.
How do I know this? I have read articles about people with some form of heart issue. I saw an outstanding article about a man in his 20s who was completing elite military training, and was given a routine form to answer about his health. The form included the question “Have you ever passed out or lost consciousness?” He said that question “grabbed” him because he had passed out twice that week and several times the month before, and was concerned about the consequences for his career. Like me, he went through a frustrating period before a diagnosis resulted in a pacemaker implantation. I said to myself as I was reading: “Seriously? It did not dawn on you that you had a real health issue going on? Instead your first concern was how the yes answer on the form would impact your upcoming military career?” And then I thought of the adage, people in glass houses shouldn’t throw stones. I thought of the number of signs I blithely ignored because I was afraid of how it would impact my career as well as my desire, even sometimes obsession, to be physically active.
I also saw an article about a very fit woman who woke up having to throw up in the middle of the night. She came back to bed feeling very cold and clammy and just wanted to sleep. Her husband insisted on driving her to the emergency room because he thought she might be having a heart attack. In going over her health history with the ER staff, she referred to herself as super healthy, no history of heart problems in her family, etc. They put her in a room and performed a few tests. While she was in the emergency room she started to experience a heart attack. If her husband had let her just sleep, she likely would have been dead by the next morning. I saw myself in this story because similar to this woman, I was skeptical that anything at all could possibly be wrong with my heart.
So take advice from a student of the school of hard knocks. If you are fortunate enough to actually survive the willful disregard of serious danger signals, wake up! Listen to what the doctors tell you. Apply the energy you have applied to your career to taking the best possible care of yourself.
Thankfully these patients and I had the good fortune to be treated immediately by doctors and nurses who excelled at explaining our diagnosis and treatment options , and treated us with compassion. As the woman who had the heart attack described the doctor who treated her, I could see him looking at her with the same look of compassion in his eyes as the doctor who went over the results of my holter monitor with me. This is the same compassionate look and empathetic manner displayed by: my heart doctors, my cardiac nurse, my advanced heart failure specialists and my therapist. They listen to all my questions and concerns patiently and completely, and provide me with answers I can apply in my practical life. They make me feel as if I am the most precious patient they are seeing that day.
Equally important, they occasionally provide a reality check. One of my doctors advised me that my heart would function better if it was in the body of a teenage male. By the same token, I have realized that my health picture would be more positive if I did not have other issues I've had my whole life: allergies, sinus blockages, reflux and other stomach issues, and ocular headaches. The difference was that pre-heart failure, these things were nuisances but I could always find the energy to power through. Now, I have to account for them. They drain the energy I need to devote to just everyday living with a defective heart.
And let’s not forget the fact that while it is important for me to take all my heart medications, they do come with a down side. I already had low blood pressure to begin with, and a combination of 4 different medications can make my blood pressure even lower. There are some mornings when I have some lightheadedness and I have to slow down for a while. Consequently, when the other pre-heart failure health issues appear, I know I likely will not be able to get as much done that day as I planned. As much as I would like to tell you that I am beyond being bothered by this, I would be lying.
Earlier this year, I had a bit of a bad stretch where it seemed like everything I attempted to do was jinxed and I was just losing energy. I thought back to a session with my therapist where she referred to me as a person with a chronic illness. This may sound incredible, but even though I’ve lived with the diagnosis of chronic congestive heart failure for over three years, I never thought of myself as having a chronic illness. Yes, as much as I talk about the fact that I’m learning to live with this diagnosis, I’m only human. I still have some unrealistic expectations that my heart failure may be temporary. But while my heart is no longer "dilated", which is good, I still have "cardiomyopathy".
I googled the term "living with a chronic illness" to see what lessons I could learn from others who have walked this path. I found a great article called the spoon theory on a website called "But You Don't Look Sick". The name of the website caught my attention because I get that comment a lot along with pressure to behave like a non-sick person (whatever that might be). The author, Christine Miserandino, provides an insightful illustration of the path walked by those with chronic illness. I am glad I found her website.
I think finally focusing on the term “chronic illness”, and the fact that I was having a crappy spell, ganged up on me. Because my energy level was low, I couldn’t seem to motivate myself to find something to lift my spirits. I was a bundle of nerves waiting for the most innocent little issue to convert me into an emotional wreck. When it finally happened I went to God and just cried and cried. I asked God if he was even there. I kept saying things like “I try so hard, I'm not trying to hurt anyone, I'm only trying to help people, yet I keep being punished. “ I was surprised that lightning did not strike me for talking back to God. Then I realized that maybe I finally hit the crying part of the grief process that you have to go through when you have a chronic illness. Wise church friends counseled me that God does not desert us when we are angry with him, and that he cries with us.
Maybe my friends were right because all I know is that I soon cried enough that I was able to sleep. I woke up the next morning with a more positive mindset. I still have some down times since that epic cry. I am still frank with God, but I also acknowledge that I can feel him there. I am so relieved to have him with me every step of the way on my fulfilling, yet sometimes difficult journey.
For those who may not yet feel the draw of a strong faith in God, you may ask if I pray so much, why isn’t God just curing me? As pastor Rob Bell put it in one of his motivational videos, God nor only created us but gave us the power to create and become part of the world’s living energy. But there is a risk that as the creation unfolds, things may not turn out the way we had planned. When that happens, we should not ask God to do something for us that we can do. I have incredible discipline, and I can follow the doctors’ orders so my heart failure does not stop me from being a vital force on this earth. I need God’s help not in curing me, but in helping me discern and accept my new role in his evolving creation.
So it has dawned on me that I may need to hit the pause button many times in the future. I am beginning to learn the hard way that pause is a critical function when you have a chronic illness. I have to continue to relearn my current limitations, and this also means I may have to disregard the disappointment of others, or at least put it all in perspective. But I also need to acknowledge these people mean well but have no way to grasp what I am going through. And that is okay as well..
Melanie discovered that she had heart failure in 2013. Since that time, she has been learning how to live with the condition, and how to achieve balance and personal growth.