After 15 years with a rare and chronic illness, I have learned much about navigating life and chronic disease.
Pulmonary hypertension (PH) is complex and challenging to predict. If you are like me, lacking control over your day is frustrating and anxiety-inducing. But despite those unpredictable days, we can work on the things we can control.
The following tips hopefully will help to bring some peace of mind to those with PH and other chronic illnesses.
Tip 1: After my morning devotional, I’ll write down three things I am grateful for that morning. I know, there might be many more, but three helps keep it simple. That said, the day might be interrupted by PH or other symptoms, or medication side effects, but I have a plan. By starting the day with gratitude, I can set the day’s pace and mood.
Tip 2: I try to limit the stress in my life. Stress exacerbates my PH symptoms and interferes with my mental health, so reducing it is critical. Lately, this has meant cutting back on social media and having quiet time. I find that even 15 minutes of unplugging and going outdoors is helpful. Stress is a part of life, so we must learn how to decrease and manage it when possible.
Tip 3: Accept that you aren’t the same as you were before PH. Your body is different, and your physical abilities have changed. Accepting this early on helps to remind you that your abilities may change each day. Do the best you can and move on. Accept your new best, your new “normal.”
Tip 4: Use oxygen and other medical equipment prescribed to benefit you. It took me a while to become comfortable wearing oxygen in public. I am much better at it now. But some days I am stubborn about using a wheelchair for longer distances. My husband, Manny, often suggests using one, but I’ll fight him on it for a little while. Eventually, I’ll be grateful, because using one helped me conserve energy and better enjoy an outing.
Tip 5: Don’t be so tough on yourself. Living with PH isn’t easy, and it isn’t for the weak. Learning to be patient with yourself helps. I often remind myself to be as patient with myself as I am with others. I’ll admit that giving advice is much easier than taking it, wouldn’t you agree?
Tip 6: Learn how to control your emotions. When I feel fatigued and at my worst, any little mishap can wreak havoc on my psyche. Talk therapy has helped me learn to better control my emotions. Because I am a highly emotional person, this is challenging. But talking about and acknowledging emotions is beneficial.
Tip 7: Adequate sleep is crucial. I’m not as productive if I sleep less than six hours. PH will drain you and cause fatigue that might be unfamiliar to you. Having a comfortable bed and an environment that promotes sleep can be advantageous. Also, limiting screen time before bedtime helps. I hate to admit it, but for me, this is still a work in progress, as I enjoy reading articles and other columns at night.
Tip 8: It’s OK to say no. Remember that you have a chronic illness. You may be unable to accept all invitations and do all you once did. This requires a bit of planning on your part. By learning this early on, you can decrease feelings of guilt when you say no to things.
Tip 9: Plan when you can. I realize that with PH, planning is often challenging. But most times, it will help. When something is planned for later in the day, I’ll stay in my pajamas until a few hours before an activity. I try to rest and nap when possible. Then, I’ll shower and get dressed. This doesn’t always work, but sometimes it does. Also, it’s common for me to be down a few days after venturing out.
Tip 10: Take it one day at a time. Remind yourself that you are sick. If you need to lie on the couch all day and do nothing, do it. (Yes, it’s easier said than done, I know.) Your body is as unique as you are, so don’t compare yourself with others, including those with PH.
I hope you find some of these tips helpful. Living with a rare disease is challenging and frustrating. So many things are out of our control. But by using these tips, we can gain more control over our daily lives.
What are some things you use to cope with PH or other chronic illnesses? Please share your thoughts in the comments below.
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.
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