Finding balance between work and other aspects of life with PH

Managing PH is a daily battle, as symptoms can be debilitating

Jen Cueva avatar

by Jen Cueva |

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Living with a rare disease like pulmonary hypertension (PH) presents unique challenges. Balancing work, your personal life, and your health can feel overwhelming for both patients and their caregivers. If you find yourself struggling to balance work and life with a rare disease, please know that you’re not alone.

Managing PH is a daily battle, and its symptoms, along with medication side effects like nausea, headaches, and muscle cramps, can be debilitating. Listening to your body and recognizing when to step back is crucial, as pushing through pain and exhaustion can lead to burnout and worsen your condition.

Before my PH diagnosis, I worked as a nurse, devoting my time and energy to helping others. Nursing entails long hours and requires physical stamina and emotional resilience. I thrived in that environment, driven by my passion for making a difference in people’s lives. The challenges I faced in my career were far outweighed by the satisfaction of improving a patient’s condition or offering peace and dignity to those I cared for.

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But then I began experiencing shortness of breath, fatigue, swelling, and chest pain, symptoms I initially ignored. Little did I know then that they were early signs of PH. My life took a dramatic turn at that point, forcing me to reassess both my career and my personal life.

Despite my diagnosis, my passion for helping others never waned, so I had to find another way to pursue it. I’m grateful to Bionews, the parent company of this website, where I’ve worked for five years, for allowing me to continue my mission of helping others while advocating for rare disease communities. I can raise awareness and provide valuable resources to those in need by writing my column, moderating forums, and practicing community outreach.

Prioritizing rest and self-care

Getting enough rest and practicing self-care are essential for managing PH. Our bodies need time to recover and recharge when exacerbations occur. Incorporating regular periods of rest into a daily routine is key. That might mean taking short naps during the day, practicing relaxation techniques, or simply sitting quietly and focusing on breathing. For me, going to the beach is my way of resetting.

But self-care entails more than physical rest. It also involves taking care of your mental and emotional well-being. That includes activities that bring you joy and relaxation, such as reading, listening to music, or spending time with loved ones. It’s important to find ways to reduce stress, whether it’s with meditation or yoga or by talking to a therapist. Remember, taking care of yourself is not a luxury — it’s crucial.

Some practical tips

Finding the right balance requires careful planning and setting priorities. The following tips are ways that I achieve harmony in my daily life, and perhaps you’ll find them helpful, too:

  • Set realistic goals: Understand your limitations and set achievable goals. Break down tasks into smaller, more manageable steps to avoid feeling overwhelmed.
  • Stay organized: Use tools like planners, calendars, and apps to keep track of your schedule and daily tasks. Being organized can help you manage your time more effectively, as each day is a work in progress.
  • Communicate with your employer: If you’re working, consider communicating with your employer about any accommodations that you need. Flexible work hours, remote work options, and reduced workloads can make a significant difference. I’m grateful that Bionews offers me the opportunity to work remotely and allows me the flexibility I need.
  • Prioritize health appointments: Regular medical checkups are crucial for successfully managing PH. Make them a priority and ensure that they are part of your routine.

Remember, you can lead a fulfilling and meaningful life by prioritizing your health, seeking support, and finding new ways to pursue your passions. You’re not alone in this journey.


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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

Comments

Gayle Ward avatar

Gayle Ward

Thanks Jen for sharing this with us. I have been diagnosed for11 years with PH. I have been pretty stable for the past few years. I am also a nurse retired 10 years ago. A year ago my husband had a stroke and requires full time care. Since I am a nurse I thought I could manage his care on my own. I had to give in and hire help. The balance and self care makes such a difference in the quality of life. A lesson hard to learn. Warm wishes to you and thanks for your ongoing support 💕 you do make a difference

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