What it Really Means to Live with Pulmonary Hypertension

Earlier last week I was struck by crippling sinus pain (an unfortunate side effect of one of the treatments I take for pulmonary hypertension.) The weather changed drastically from perfect sweater weather to much cooler weather, both dry and rainy. The change in air pressure sent my sinuses and POTS (postural orthostatic tachycardia syndrome) into overdrive. Thankfully my PH symptoms weren’t too harshly affected, other than some heart palpitations that have mellowed out. All this created a perfect storm in my sinuses that left me feeling pain, severe dizziness, and nausea.

My sinus pain and nausea lasted for days. I was completely miserable and feeling a bit like a less-fabulous Lucille Austero (Lucille Two for you Arrested Development fans.) I even fell off a couch while sitting up because the room spun like a funhouse around me — minus the excitement and clowns. All this came at a pretty inconvenient time because my boyfriend and I had plans for an overnight trip. It was something we had been trying to do every month for the past little while.

The morning of our trip came and I was still stifled by sinus pain, dizziness, and nausea. I cancelled all my plans and opted to stay home in my pajamas and power through episodes of The Mindy Project. Lying down helped with my symptoms (so I accidentally fell asleep a few times). Unable to do much standing, I couldn’t shower and didn’t bother washing my hair for such an extended period of time that I am too embarrassed to reveal.

PH means plans put on hold

I tried my best to lay low and do everything possible to manage my pain and symptoms, hoping I would be well enough to hold onto other plans I looked forward to. At the very least, I was hoping I would be able to eventually wash my hair without my eyes feeling as if they were going to explode in my head, or without vomiting due to my land induced sea sickness. Thankfully my body adjusted and the weather decided on a season. I was able to finally wash my hair, go to Toronto for a concert, and even win second place at a costume contest at quiz night.

My second place costume, a few days after my week spent in jammies with greasy hair.

This is what living with an invisible illness like pulmonary hypertension looks like.

Living with pulmonary hypertension means some days, weeks, months, and years are worse than others.

Living with pulmonary hypertension sometimes means greasy hair days because it’s too hard to take a shower.

Living with pulmonary hypertension means cancelling plans, no matter how badly you want to keep them.

Living with pulmonary hypertension means your life can sometimes be painful — both physically and emotionally.

Living with pulmonary hypertension means you may have choices stolen away from you by the disease.

Living with pulmonary hypertension means you have to plan for wherever you want to go. (Will I be able to climb the stairs? Will the food be too salty for me to eat and enjoy? Will the nearest hospital know how to treat me?)

And sometimes living with pulmonary hypertension means lying in bed, looking out the window and admiring the autumn leaves — and hoping tomorrow is better.

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.