These past few months have physically, emotionally and spiritually taken its toll on me. COVID-19 has brought an unprecedented amount of stress and uncertainty to millions around the world. For people like myself, with a chronic illness, the pandemic has made managing my health all that more difficult. I thought creating my dream vegetable garden, working on our property with projects and staying busy would make this uncertain time in history go by quick and painless. Wrong.
Back in March when everything started shutting down, I was told to work from home, I could no longer meet with my personal trainer, my appointments with my physical therapist came to a halt and my future medical appointments were placed on pause. I vowed to stay away from all emergency rooms, the hospital, and all doctors. There was no way COVID-19 was going to take me out.
As my luck and health would have it, I managed to hit every single one of these more than once. I fought sepsis, two bouts of C-diff, a j-tube that fell out, a picc line added, a surgically removed chest port, and a sinus infection that would not go away. Not to mention I still need to have a few more tests completed, eventually another chest port surgically placed and a trip to OHSU for another feeding tube. Through all of this, my nurses, nurse practitioners, certified nursing assistants, and doctors have been nothing but compassionate, understanding and humorous. There were times when I was in the emergency room and in the hospital all by myself because I was not allowed anyone to be with me. My medical team spent more time with me than medically necessary. They visited me when they had a few minutes, kept my spirits up and kept me laughing at my worst.
I am slowly realizing it can be stressful living with a chronic illness on a normal non-pandemic day. Someone with a chronic illness was already isolated prior to the pandemic. We adjusted to cancelled plans, stayed home, lost contact with friends, lost our careers and adjusted to finding new hobbies to keep our minds active. During a pandemic, add to this isolation, stress, anxiety and fear while maneuvering through the world during a pandemic and it is exhausting on a level I have never experienced. The possibility of being taken out by something you have little control over because of someone else’s actions feel defeating. I wanted to quit this past month, instead I rested. I reflected through tears what was wrong with me.
What is wrong with me? A chronic illness does not stop for a pandemic. I am placed in a hyper-aware state of my surroundings, and I need to take extra precautions to avoid exposure. My healthcare access is spotty at times due to medication delays or access to healthcare providers. As a result, I have had to muscle through symptoms or put off medical treatments until it is safe. The fear of having to choose to quit a job in education due to safety concerns adds to financial insecurity and my medical care. Because of our medical system in the United States, I work to pay for my medical treatment so I can continue to live. Does not make sense to me, but it is a reality for so many.
All these challenges create a spiral of emotions, frustrations, and uncertainty. The times we are living in are not normal, but my feelings are. I have shared with those who are close to me and I know I am not alone. Today I will rest.