Navigating Summer Fun With a Chronic Illness
Summer is in full swing here in the U.K. Many are jetting off on holiday, and thousands flocked to the recent Glastonbury Festival.
I’ve always loved summer, music festivals, heat, and travel. But now that I live with pulmonary hypertension (PH), I have to make certain adjustments.
When I was diagnosed in 2017, I was hesitant to travel, let alone go to a festival, but over time I’ve become determined not to let my health hold me back. I’ve realized that if I ask for the right support and use the proper accommodations, there’s very little I can’t do.
This summer I’m taking a trip to Rome and attending a festival in the U.K. I’m bringing a small, foldaway stool with me to both places, as I know it will be a lifesaver when I find myself in long queues. At one time, I might have been embarrassed to need an aid like this, but I’ve learned to prioritize my comfort. The truth is that PH symptoms and medication side effects make it painful to stand for long periods of time.
I will also bring my personal, handheld fan, which helps me deal with breathlessness and headaches in the heat.
In addition to these helpful items, pacing myself makes a big difference. When it comes to catching all the best music at a festival or sightseeing over a long weekend, it can be tempting to try to cram in as much as possible, but this approach would cause me to crash and burn.
To avoid this, it’s important for me to plan ahead, accounting for the fact that I often feel worse in the afternoon. It’s also helpful for me to be with someone I trust who is happy to rest with me or call it a night early if need be. I couldn’t have had nearly as many adventures over the past five years as I have if it wasn’t for the wonderful people who support me. I’m lucky to have people in my life who are well-versed in my needs and understand that I’d rather go to a festival and be in bed by midnight than give up festivals altogether.
While my loved ones often help me out, it’s sometimes important to seek out professional support. In recent years, I’ve looked for accessible tickets to festivals and concerts, which guarantee me a seat away from the crowd. This is vital with PH, because being pushed around in a crowd is scary at the best of times, let alone when you’re short of breath.
I used to feel a sense of shame about applying for accessible tickets, but now I’m determined to do whatever it takes to make sure I can enjoy as many adventures as possible in a safe way that works for me. Pulmonary hypertension has stolen a lot, but I won’t let it rob me of my summer fun.
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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Dorothy Irwin-Browning
Very nice article, Ellie. A pleasurer to read. And I have to say I am not aware of ages at which people are most affected by PH. Your age of 22 sort of surprised me. Doti