Going with the flow and finding balance in life often seem impossible with a chronic illness. I wish I had the luxury to release control to the day. I wish I could just pack a bag for a spontaneous road trip, head out with friends unsure of what time I’d be home, and enjoy the flow of life that many take for granted.
When living with a chronic illness, time management becomes second nature. It has become my “new normal” to only stay out for the amount of time my oxygen tank allows. It’s my normal to revolve my day around which times I need to go back home and rest, take medication, go to doctor’s appointments, and care for myself. Much of my day seems controlled by a stopwatch that can’t be paused.
Accepting this as my new normal has been a work in progress. Some days, I am great at taking care of myself and effectively managing my time. I ensure I’m back to my apartment in time for my medications, and take a break from the day to mentally and physically recharge. Other days, I am caught up in the moment of what I’m doing. The harsh reality that I face in these moments is the fact that my body and physical needs are NOT the same as those I’m around. When I have to pause what I’m doing and am reminded of my time constraints, I feel frustrated and defeated.
No matter how frustrated I feel, I realize that taking care of myself HAS to be a priority. When managing a chronic illness, self-care isn’t much of a choice. For me, as well as many others with pulmonary hypertension, it’s a necessity to staying alive and as healthy as possible. Self-care takes a lot of my time and also limits time spent with friends and family. Accepting the sacrifices made for my health has always been challenging. Finding the balance between spending time with friends and making sure enough time is given to my physical needs is especially difficult.
An illness that requires effective time management doesn’t leave a lot of room for spontaneity. This can become challenging in relationships with a significant other or a friend. It’s important for me to be honest with those who are a part of my life and let them know that on most days, I need advanced notice about plans. Knowing things in advance allows me to plan my day around something that I’m looking forward to — whether going out to dinner or getting a few drinks with friends. When I know I have something to do, I can get the proper rest I need, take all medications beforehand, plan out how many oxygen tanks to fill, and manage my symptoms to feel as well as possible.
People spend lots of energy trying to balance their time between work, family, school, a social life, relationships, and self-care. With chronic illness, my balance in life is dictated by how I feel. Much of my time is spent taking care of myself. When forced to take care of physical symptoms, it’s easy to feel there isn’t much balance at all. Managing pulmonary hypertension seems like a full-time job. Some days, it’s the only job. It takes energy, focus, motivation, and determination to get through a day, and that may be all I have time for.
Going with the flow is a privilege that many take for granted. Those of us with chronic illness and pulmonary hypertension are painfully aware that our bodies and symptoms make us feel as though our days are timed. The realities of our illness — including medications, oxygen usage, symptom management, and appointments — dictate how much balance we have in our life from day to day. No matter how frustrated we may feel, It’s important to remind ourselves that time spent on self-care and managing our illness is never wasted time.
Note: Pulmonary Hypertension News 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 other 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 Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.