How do you cope when your progress is slipping. or the stone you are pushing uphill is so o heavy it may crush you?
Throughout the last 4 years, there have been a number of times where I performed things that seemed amazing to me given my condition. On the other hand, there have been episodes where I just cannot seem to improve, or worse yet, seem to have a backslide. I would like to tell you that I am always calm and optimistic during these episodes, but I would be lying. In fact, I had a mini meltdown this past weekend.
I used to love reading Greek mythology when I was younger. The stories were both fascinating and vivid. I recall one story about Sisyphus, a King who thought he was clever and relished tricking the Gods. But as always happened in Greek myths, the Gods eventually turned the tables on him. As punishment for tricking the Gods, Sisyphus was placed on a hillside in the underworld with a heavy boulder above him. To escape being crushed, he had to push the boulder uphill. The Gods told him that if he rolled the stone to the other side they would release him. Each time he reached the top, though, the boulder rolled back down to the bottom, forcing Sisyphus to start over.
Much to my chagrin, at times it seems to me that I have taken on the role of Sisyphus. Not only am I pushing the boulder up the hill, I am laden down with well-organized pill containers, and notebooks with lists of how much fluid I’m taking in, heart rate charts, and weight chart. I keep pushing the boulder even though I get short of breath and I feel a bit fuzzy. Despite all this effort and all the heavy-lifting I am doing, the boulder still seems to roll back down as it approaches the top of the hill. As far as I can recall, I never tricked God. I may have tried to pull one over on my parents, but never God! Why do I have this challenging burden that may slightly let up, but never seems to end?
So yes, when the boulder starts to fall back down the hill, those are the days where I want to go back to bed and sleep rather than face a day that might be less than successful. Fortunately, although I have been known to be grumpy, and have even found myself crying when I see my therapist, I don’t think I can be put into the category of being depressed. I came to realize that each instance of a bad day or days, I would at some point get beyond the them, with the aid of a number of techniques which I hope will keep growing.
Most important, I realized this weekend that I need to give the boulder a name. I call it “Chronic” to remind me that heart failure isn’t a temporary thing like the flu or the mumps. Heart failure is continuing and will be my companion for the rest of my journey on this earth. Alas, the occasional meltdown will probably continue as well, though hopefully less often.
I think I have also learned that a journey cannot be fulfilling if you do not have some company on the way. For this particular long-lasting journey, I recalled an e-mail I recently received from a friend who is battling cancer. We traded stories of what was going on with our treatments. She commended me for being so vigilant. In fact, vigilant is a word that she has used several times when we talked about my on-going journey with heart failure. So I realized this weekend that my buddy “Vigilance” is a companion who can keep me alert when my symptoms seem to take a turn.
Vigilance can help me monitor the symptoms and remind me when it is time to just give the medical professionals a heads up about how I am feeling. Because Vigilance is so organized, I have yet to experience a major catastrophe as we push the boulder up the hill. In fact, Vigilance is good about bringing to my attention previous e-mails from my nurses where I perhaps felt a little worse for wear. When I look at the dates of the e-mails, I remember how I felt at the time. I also realized that the episode passed and then I felt more energetic and vital. Vigilance keeps refreshing my recollection about previous similar episodes, and keeps me focused on the positive.
I also asked my buddy “Humor” to tag along on the journey. My friend Humor is a bit quirky and eccentric, but I forgive her because she always chimes in at the most appropriate times in my life. You may have seen some her quirky sense of wit jump out at you as you are reading this blog. That is because in laughing at myself and the frustrating events I am living through, it perhaps makes them easier to bear. I remember a feature in the magazine Reader’s Digest when I was growing up. It was called “Laughter is the Best Medicine.” Happily, it isn’t something that I need a prescription for but can find easily on my own with the help of my friend Humor.
I sometimes think the most difficult obstacle to surmount is feeling like you are the only soldier on the battle field. While friends and families and medical care providers try to understand, unless you are going through a chronic illness, you can’t imagine how lonely it sometimes can be. That does not mean that you have suddenly become critically ill or that you are dying. What it does mean is that the loneliness is increased by the fact that you feel that other people around you are moving forward and you are not. I am fortunate that my inner circle has not given up on me (although I am amazed that they are not sick of my whining.)
Accordingly, when I hit a bad stretch, I have to remind myself that the weight of the stone may be too strong for one little person with a weak heart to handle. I have to remind myself that I am not travelling through life alone. I have learned to accept that I need all my friends and resources with me to get the stone all the way up without it rolling back on us. Or as experts will tell you, you need to make sure you have support from all sectors of your life – your doctors, your friends, your family and your church.
I also try to get myself beyond those pity party moments where I want to hunker down with a box of chocolates because “no one understands” what I am going through. When I am honest with myself, if someone had tried to explain how crappy you can often feel when you have a chronic illness, I would have been skeptical. There is no way to articulate to a healthy person how wiped out you feel on an extended basis until you actually feel that way.
But even if people cannot understand and are unable to put themselves in your shoes, they still care very deeply about you and your well-being. And as a good friend of mine reminded me, if you don’t stay in touch with people and let them know what is going on with you, how will they know that they need to pray for you? And as another friend reminded me, God has your back.
Sometimes I think the best gift my friends and family members give me when I am in these moods is to say: “There is no way I can understand how you are feeling. But I am can certainly understand the frustration you are feeling. I just want you to know that people do care about you.”
Some people have suggested that a support group is helpful when you have heart failure. I have not followed that route yet because I think I get sufficient support through my family, my church, my therapist, my friends and my blog. However, I do keep the option kicking around in the back of my mind in case my need for support becomes overwhelming. If you are reading this and have a chronic illness and do not know where to turn, then maybe the support group is an option you need to pursue. Please find support where you can, because you should not feel like you are on this journey on your own. Your doctor or a local hospital may be able to put you in touch with support groups and other community resources.
I have found that sometimes the hill that I have to climb seems less daunting if I understand as much as possible what is going on with my body and what I need to do to gain strength and resilience. So I periodically look at the websites to learn as much as I can about heart failure and all the assorted problems that can arise. I try to stay on top of what is new in the world of medicine and devices, hoping that there might be something out there that can help me. It is empowering to know what your options are. I also try to engage in exercise each and every day because I do know that physical activity can condition my heart.
Make sure that you have medical support from experts you trust, and who you can talk to openly about your ongoing questions and concerns. I have found that it helps if the members of your medical team are not only good at what they do but have good senses of humor. I am not sure why this clicks with me. Perhaps since I use my friend Humor to get me through the tough spots, I relate well to people who can see the humor in a situation. Or maybe it is because if I seem to be bordering on the edge of drama queen, they can make me laugh my way out of it.
As much as is possible, keep doing the things you like to do. You'll stay connected as well as boost your self-confidence and sense of community. Have a task that you really like to do that you can divert your energy to. In my case it is writing. There is nothing that makes me happier than to put ideas down on paper, and then edit them and edit them until I say something in a really special and unique way.
Perhaps your need has escalated beyond the need for support. Perhaps you are always sad or anxious or confused. Perhaps you even follow into the category of someone who is depressed. If this is the case, don't wait to get help. Find a therapist or counselor you who can assist you.
The most important thing to remember is that the obstacle is never insurmountable when you have companions and health care professionals you can trust who can help you push the boulder and who can support and listen to you.
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.