Rest and PH: When My Body Talks, I Listen
When a person is diagnosed with a serious condition like pulmonary hypertension (PH), they must alter their lifestyle. One of my biggest challenges has been learning to take it easy.
I like to keep busy, and I tend to get a bit glum if I lie in bed all day or don’t leave the house. But when living with a chronic illness, I must accept that if I say yes to everything and don’t give myself time to rest, I’ll probably get sick. I’ve learned this lesson the hard way!
I have tried many times to keep up with friends, only to have to take time off work to recover. Fear of missing out can lead to some unwise decisions. That said, it’s all about balance — I can’t drink green juices and go to bed at 9 p.m. every day. I must have some fun!
It sounds like a cliché, but it’s true: I must listen to my body. My shortness of breath directly correlates with how much sleep I get, so I must be strict about getting a full eight hours. People with chronic illnesses need more sleep than healthy people do, but ironically, PH makes sleeping difficult. I could — and plan to — write a column about the sleep habits that help me manage my symptoms.
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One way to strike a balance between rest and fun is to plan ahead. If I’ll be doing something exciting on Saturday, I try to keep Sunday free to rest up. However, I can’t predict how I’m going to feel on any given day. Some days, I wake up with zero energy, even if I’ve had a nice, long sleep. So, I must be flexible, and I always try to seize the day when I’m feeling good.
The shift between good and bad days can be difficult for friends to understand. They might see me dancing around, relatively symptom-free on one day and assume I must always be like that. I have learned to better communicate my needs, and now I often ask friends to come round and watch a movie instead of going out.
I still overdo it sometimes, but I’m learning. The online chronic illness community reminds me not to be disappointed in myself if I don’t have the energy for something, and to always be kind to my body.
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.
I am 67, diagnosed 6 months ago. Guess what, not surprisingly, docs don't seem to care much about prolonging the life of late onset ph patients. The concern and urgency is gone, replaced by, well, you've lived to be 67, that's what you need to be thankful about.
My fatigue scares me. It makes me not want to move for fear it will kill me. The sob has me gasping for air & the dizziness has me grabing for a wall to hold me up.
I guess I just want honesty. Refer me if you have no interest in treating me, just don't leave me out hear dangling & planning my death.
I have been recently diagnosed as well. I understand your fear of the fatigue as I have experienced it as well. I just started ambrisentan today and I'm eager to see if it helps. It took me a long time to be diagnosed. My echocardiogram just kept getting worse. I'm supposed to see a doctor in December who does nothing but PAH. I'm seeing one of his colleagues until then. She seems to be great so far. I didn't feel like I was being listened to until I met with a pulmonologist. Quickly my cardiologist signed off. Was dismissed by 2 other pulmonologists before this. It's a tough road. Hoping you will find a Dr who will listen.
My wife has PAH and has trouble keeping her fluid content down. She now takes a double lasix dose two times a day, which causes her to go to the bathroom frequently. This naturally interferes with her sleep. I would be interested if others have this problem and, if so, how you cope with it.