“When thunder rolls through my life,
Will you be able to weather the storm?
There’s so much I would give ya, baby.”
While these lyrics to Pink’s “Love Song” aren’t about chronic illness, they remind me of the roller coasters we encounter in our lives.
I am fortunate to have a husband and caregiver who loves and supports me along my journey with pulmonary hypertension.
Shortly after my PH diagnosis several years ago, I reminded my husband, Manny, of my love for the thrill-seeking adventures to be had on roller coasters. I didn’t realize our life would actually become one. My husband laughed at this observation, particularly because he never was a fan of roller coasters — but he always rode them with me.
Today, we continue on that emotional roller coaster ride that PH and coexisting illnesses have created.
Despite the ups and downs, my husband has stayed by my side for 15 years after my diagnosis, fulfilling his wedding vows. Heck, on some days, I think he fights more than I do, especially when doctors give us the runaround. I know it’s hard for him to watch me deal with my health challenges, and I know it breaks his heart. He can never relax until he knows I’m OK.
My recent hospitalization took a toll on his psyche. We don’t often hear about the struggles couples have while navigating the world of chronic disease. And stress without answers can be really challenging.
My husband and I have a healthy marriage, yet we occasionally argue. When things are tough, we feel like it’s us against the world. But if we let this stress continue without communicating our emotions, fears, and concerns, things quickly can get out of hand.
The situation of the world today only adds to our stress. Keeping a marriage healthy requires patience from both partners. Too often, my husband focuses only on my health, putting himself last. Many caregivers do this. Reminding each other that we can do this together helps us push through challenging times.
Because I’m aware of the toll that my PH takes on my husband, I try to show my appreciation. On my less-than-stellar days, I still try to do what I can. We have learned to grow and adapt as difficulties come our way.
For example, I always keep a stockpile of colorful Post-it notes. I like to write cute notes of love and appreciation for my husband. I’ll add one inside his lunch to read in the morning before he heads to work or while there. I have even written messages on bananas and oranges. He’ll often return the favor by leaving me one on the kitchen counter, so I’ll see it when I wake up.
Cooking is another hobby I enjoy. I try to make dinner most days when he is at work. Creating a meal he will enjoy is important to me. Some days this is exhausting, but I do it so he can enjoy it. He usually cleans up after dinner. On a good day, I’ll try to put the dishes in the dishwasher, which is a win-win night!
I remind him that it is OK to take mental breaks and have time for himself. This shows that he is appreciated. He rarely goes out to do something by himself or with his friends. He had been cycling, but he’s often scared to leave me alone.
It’s challenging for caregivers, who must take care of their own mental health, too. My husband calls me several times during his workday to check on me.
I am grateful that he cares and loves me so much. I hope and pray that things will calm down soon so that we can focus on joy. I remain hopeful as I try to look ahead and plan fun stuff for when things have calmed down. Of course, our plans consist of things we both can enjoy together. As we enjoy those things, we remind ourselves that there is more to our marriage than PH and coexisting illness.
Together, we can do this, and you can, too!
Caregiver burnout is common among those who care for loved ones with a chronic illness. Caregiver Action Network offers a wealth of useful information about it.
Do you have tips about how to show appreciation to your caregiver? Please share 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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