I Am Strong, but I Am Tired
“I think for me, any great art is art which communicates human emotion.” – Greg Lake
Good art evokes emotion. This sculpture, by Simone Wojciechowski, titled “Tired Soul,” represents exactly how I feel:
“Tired Soul” by Simone Wojciechowski. (Courtesy of Simone Wojciechowski Sculptures)
Why am I tired?
Lately, I seem to be grasping at straws. I am trying to find a reason besides my incurable and progressive Parkinson’s disease to explain why I feel so horrible. I am always uncomfortable in my own body.
Almost six years after my diagnosis, I still cannot accept that my symptoms are due to Parkinson’s. I keep searching for another reason to explain them, evidenced by my research on hyperparathyroidism.
After all the lab and imaging tests and doctors’ appointments, my hyperparathyroidism diagnosis has been deemed a borderline case. Hence, I need to accept that my extreme fatigue, brain fog, and mood issues are most likely due to Parkinson’s. The disease is progressing, and I seem to have no power to slow it down.
I was strong
When I was diagnosed in 2015, I thought I was invincible and could control and slow down my disease progression with exercise. However, my worsening nonmotor symptoms of fatigue, apathy, and depression leave me between a rock and a hard place. These symptoms prevent me from doing the very things I need to do to improve my quality of life and possibly slow down this disease. What a vicious cycle!
I am still tired
My daily life seems to revolve around Parkinson’s. Planning my day must incorporate when and where I can take my medications (every three hours). Add doctors’ appointments and Parkinson’s-related therapies, and my day seems to be all about the disease. This is wearing me down.
It doesn’t help when people tell me I look fine. Thanks to years of dance training, I have developed a strong sense of body awareness. This means I have a good understanding of my own body. I feel and see changes in myself that others cannot.
More often than not, I fake feeling good. This requires a great deal of energy and effort, both mental and physical.
When well-meaning people comment that there are so many others with Parkinson’s whose symptoms are much worse than mine, I feel awful. When driving their point home by saying others with Parkinson’s would probably love to change places with me, the guilt settles in. However, I cannot compare myself with others; we all have different life experiences, and the disease impacts everyone differently. Only I can feel my symptoms, and I alone must handle the cards I am dealt.
How can I help myself?
I realize I must get out of my own way and dig deeper than I ever have before. Digging deep never came easily to me, but when faced with adversity in the past, I wouldn’t give up. As a dancer, I was able to push myself to do the choreography one more time at an exhausting rehearsal, even though I had been dancing for several hours after a full day at my corporate job.
While biking in the mountains of Mallorca, Spain, during a horrific storm, I was able to return the 10 miles to the hotel on my own, hydroplaning downhill on the steep mountain switchbacks in a pelting downpour with gale-force winds. I dug deep and made it to safety in one piece without crashing.
“Pity Party Hats.” (Photo by Jean Mellano)
It is time for me to take off the hats. Firstly, I need to stop feeling sorry for myself. Secondly, can antidepressants improve my mood?
I have been resistant to taking them due to the struggles my late life partner had with them. Lately, loved ones and healthcare professionals have encouraged me to pursue this option. Also, an acquaintance of mine with Parkinson’s told me her life has turned around since she started taking an antidepressant.
Since my late husband passed in 2015, I have been a mental health advocate. I need to practice what I preach. There is no shame in taking antidepressants, and I plan to pursue this path to improve my quality of life.
I will be strong again.
This column has a very different ending than I had originally envisioned. When I started writing, I was so full of despair (and had been for weeks). I had lost all hope.
The feelings of despair and hopelessness that can result from living with this disease are to be expected. Parkinson’s is a formidable adversary and it is understandable to lose hope at times. We are only human.
“No matter how much falls on us, we keep plowing ahead. That’s the only way to keep the roads clear.” – Greg Kincaid
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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