How do you to live life to the fullest when your health limits everything you do? How do you cope with waiting for some relief when, in reality, there’s no reprieve in sight?
There are no easy answers to these questions. The mounting unknowns become overwhelming as symptoms worsen in spite of rest, medication, and lots of self-care.
I spent over three years blissfully unaware of the infection ravaging my body. If I’m being fully honest with myself, I suspected something was wrong, but was too proud to admit the extent of my symptoms to doctors, loved ones, and myself. Today, I’m paying the price, along with a painfully high interest rate.
Though I have no problem exercising patience with others, I have never had much patience with myself. I know what I am capable, and I expect nothing less. In my career, relationship and hobbies, I set a goal and then put 100% of my energy into the fastest and highest-quality achievement. Quite simply, I make things happen.
The definition of patience is being able to bear provocation, annoyance, misfortune, or pain, without complain, loss of temper, or irritation.
With the onset of debilitating symptoms last fall and a conclusive diagnosis this spring, there have been countless triggers for impatience. It takes time to be seen by medical specialists, receive lab results, come to a diagnosis, and find out what drugs are effective. I used to consider myself a patient person, but the last ten months have truly tested my patience.
The hardest lesson during the process has been learning to be patient with myself. I am still gunning for my dream job, preparing the best anniversary surprise ever, and to aiming to write a novel by the end of the year–all at breakneck speed and better than has ever been done before.
I can’t do it anymore. And I can’t seem to fully accept that.
As my symptoms have significantly worsened over the last week, I have become increasingly impatient about the side effects not going away. I can’t stay awake (or asleep) when I want to, and I can’t walk to the mailbox and back without my legs give out. My brain forgets things–words, appointments, things that I promised to do–and fails to make obvious connections. I’ve vomited in public restrooms and sat on the floor of the grocery store crying in pain.
After a lifetime of near-perfect health, quite frankly, this really sucks.
Following my initial bout of valley fever, the lab work was not repeated for over three years, during which a bizarre conglomerate of symptoms were secretly labeled “hypochondria” until the telltale cocci rash made it’s debut. Suddenly, I had eight doctors calling me personally on a weekly basis to make sure I was doing okay.
The emotions that came with the impatience are nothing to be proud of. The anger, moodiness, annoyance, and abruptness quickly earned me the nickname “Grumpy Cloud” in our house. The negative thoughts and behaviors that come with impatience are not pleasant to be around.
“The two most powerful warriors are patience and time.” – Leo Tolstoy
As I grapple with the symptoms and side effects, I am becoming acutely aware of the need to acquire patience: patience with my body, my doctors, and others who can’t understand what I’m going through. For once in my life, setting and shattering another big goal isn’t going to solve my latest problem.
The thing is, patience is not an inherent, inborn trait, but rather a skill that is cultivated. Patience brings with it many gifts, including: peace of mind, acceptance, contentment, and understanding. We will all be faced with challenges in life, so would make sense to invest energy into fostering the ability to practice patience.
Cultivating patience has been a challenge for me recently, though my lack of patience is quickly teaching me that this is not the best approach. Reluctantly, I’m coming to change my attitude and beliefs about myself and my identity. Repeated burnouts are forcing me to accept that slow and steady wins the race. Attempts at running, lifting, hiking, and yoga cause me to fall into a literal heap on the ground within five minutes, with my blood pressure plummeting and heart rate soaring. It’s not healthy. It’s not sustainable. And it’s not doing any good.
“Patience is the companion of wisdom.” – Saint Augustine
Recently, patience has involved constant reminders to be kind to myself. Anything worthwhile takes time, and I suspect patience is one of those things. Just like learning to ride a bike, read a book, or understand a new topic, patience requires both time and practice.
Over the last few days, I’ve been striving to focus on the mysterious complexity of the human body, rather than wish that answers and recovery were more forthcoming. My body is fighting hard to function normally, while an invading species is trying to survive in the same space. My doctors have acted reasonably, and I can’t fault them for not realizing my case may be a rare anomaly.
Being a highly-emotional person, it’s so easy for me to get caught up in the turbulent tunnel of thoughts and feelings. However, I’m alive and this is my life, so I might as well make the most of it. I am trying to speak more kindly to myself, stripping away the self-pity and instead focusing on actionable steps to support my recovery. I’m trying not to beat myself up over my limitations, but instead graciously ask for help when I need it. I am discovering small blips of peace across my days, and they are so welcome.
When I lament the pain, fatigue, nausea, and muscle loss, my boyfriend kindly assures me that things will get better in time–we just need to remain patient and continue working with my doctors. I believe him, but I also have a sense of trepidation when it comes to anticipating to a brighter future. There is a good chance that current and future treatments won’t work, and that my current limits will continue indefinitely.
Some moments it feels as if the life I once knew is over, but I believe in my heart that if I keep showing up fully each day, a new and fulfilling life will slowly emerge. I am starting to suspect that this storm will be followed by sunshine and an abundance of greenery, and I understand that cultivating patience is the single step I can take today to weather the downpour–drenched to the core and freezing, but perfectly content in the presence of new foliage and a brighter day.