Maria R. Conklin, writer of the blog Journey of a Tired Heart, writes of exhaustion beautifully and gets to the crux of what it is like to experience a fatigue that only those with a chronic illness or going through devastating treatment for a disease can understand. Those of us whose hearts are with our loved ones on these journeys can only nod and think “Yes, this is what I see. Here is truth.”
What resonates most, as Rich and I inhabit this place where living is a world of bright spots interspersed into a continual fog, are the closing paragraphs:
“Is exhaustion an emotion? I don’t think so, but is there a state of being more intense than exhaustion? I can’t think of an appropriate word to describe it, but it’s the state of physical exhaustion to the degree of leaky emotions. You know what I mean: when your eyes are tightly closed and you finally fully exhale, relaxing every muscle in your body and a warm teardrop slides down your cheek. Then another, and another. Just a few though – and it cannot even be defined as crying.
It’s not crying. It’s all that determination and courage you had to employ to get through the past four hours – at least what is left of them anyway. You let them flow, take in a deep breath and then let it out slowly. Just as quickly as they began, they end. No more tears. Just a sweet, wonderful, lifeless kind of surrender that can only be understood by those who have walked the tightrope between life and death.”
Since Rich’s hospitalization in August for that exercise related tachycardia, we’ve been traveling a very fine line between medication and wellness. As we’ve discussed before, the triumvirate of the main heart meds introduced over the summer are problematic for Rich when all three live in our world. Less so than when taken together at the same time during the day, but even the staggered dosing we follow now brings more fatigue than we’ve had to deal with for a while. After months of his energy failing more each day, we wonder for the first time if we’re with the right heart doctors. We try not to despair.
Unlike all our previous journeys, our goals are now ambiguous. We know that we’re not optimized on heart failure medications. But what is optimized? We’re told we’re on the lowest dose of entresto. So where do we ultimately want to be on doses? We know that there are variables that make this question tough to answer. How Rich’s blood pressure, kidney function and ejection fraction respond all need to be taken into consideration.
Even well aware of these variables, at this point, the frustration we feel makes us want to shake our doctors and scream “For fuck’s sake! How long are going to continue on the lowest dose of everything and feel like shit?”
Apparently, no shaking and screaming is necessary. Sometimes it’s finding the right time and the right person. We meet, as we do every two to three weeks, with the nurse-practitioner at the heart failure doctor’s office. We discuss wellness and issues. We discuss blood pressure and blood work. We discuss holidays and everydays. The conversation alone heartens us and happens organically when the nurse practitioner casually mentions a dosage goal. This gives us an opening to enquire about the other cardiac meds and get the answers we were so looking for.
We have a plan. We have a goal… or a set of goals. As per the heart failure guru, we want to max out on entresto and metoprolol. We want to adjust up/down/sideways any of the others to optimize heart function. When we hear that those other meds may be, can be, eliminated, we rejoice. If we can stick to two, Rich can once again feel that rush of energy as he did this summer. That feeling of “before cancer” that makes all the difference. We now hope for that goal.
Blood work is taken. EKG recorded. We wait for the news… can the meds be tweaked this week? And with blessed relief comes the phone call we waited for… raise the entresto. Finally, we’re moving in the right direction. The nurse gives us hope. She tells us perhaps when we see them again at the start of the new year, we can raise it to the next… the last… dose. Other meds have been halved giving rise to more rejoicing. This lifts our spirits and we’re ready to face the holidays. Glad tidings indeed.
Of course, we also brace ourselves. Each dosage change of the heart and heart related medications has an adjustment period that is brutal. It isn’t so much the water weight gain from the changes, it’s more an emotional roller coaster.
It doesn’t last long but seems an eternity when we’re in the middle of it all. Fatigue hits like a ton of bricks. The recliner is the only place Rich can be. And then comes the end of the first full new dosage day. We’re told that Rich’s reaction can be normal but it surprises us each time. He runs through what seem to be drunken manic-depressive episodes every five minutes. On the one hand, he’s laughing, way too much, about nothing and everything in such a way that it becomes a concern. It feels forced and indeed it is, but not in a way that Rich can help. Seconds later, he’s in the depths of despair, apologizing for all this trouble while he tries to maintain composure. And it generally is less than successful.
During these times, his blood pressure drops… crashing to numbers like 81/41. His gait is troubled and unsteady. The meds are playing and playing hard. Pickles help. They balance his electrolytes and bring up his blood pressure gently. We monitor his BP continually. The night is long and we’re both exhausted by the time we fall asleep. The one saving grace, we agree, is that the morning will have brought better balance.
Rich’s Determination and Courage.
My Complete Awe.
Let’s get this new year started!