My physical limitations have led me to explore new pursuits

I have always been rather active. When I was young, one of my favorite pastimes was spending hours exploring the woods near my childhood home. I also loved running through the fields of my grandparents’ farm, climbing trees, and playing in the creek with my cousins. Ah, the carefree days of youth.

As an adult, I developed a passion for international travel. Of course, that was long before any of my rare disease diagnoses. While hereditary angioedema is my primary diagnosis these days, I also live with chronic Lyme disease, Ehlers-Danlos syndrome, mast cell activation syndrome, long COVID, arthritis, calcium pyrophosphate deposition disease (also called pseudogout), osteoporosis, and now chronic inflammatory demyelinating polyneuropathy.

With each condition and its array of symptoms came additional limitations and restrictions. Some were easier to manage, such as dietary issues; others were more demanding, such as mobility issues and increased injury risk. I now feel rather grounded.

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Exploring new pursuits

At first, I was depressed and watched way too many online videos and movies. Then, after a recent pity party forced me to come to terms with my increased fragility and decreased mobility, I realized that my life still offers joyful pursuits, albeit not as adventurous as in the past.

My family is fortunate to live in an area with many beautiful vistas, cultural activities, and social venues. I have begun exploring the accessibility of these resources so that the whole family may participate as well.

Over the years, we have enjoyed performances by celebrity comedians, touring Broadway musicals, local tribute bands, museum tours, classic car shows, parades, and more — all within a short distance of our home. I can still do all these things, even with limited mobility.

I also remind myself of all the things I enjoy doing right here in my own neighborhood. I am a long-time knitter and have considered starting a fiber arts group for folks to just hang out and enjoy community crafting. I am also part of the neighborhood social committee and help with organizing seasonal events. I can continue doing these things, too, with a little effort.

As a family, we not only like playing cards and board games and doing jigsaw puzzles at home, but have also recently been attending semimonthly trivia nights with our adult kids at a local pub. It just happens to be in the old-town section of our city, which is a well-known arts district with lots of cool shops and antique stores just waiting to be explored.

At home, I enjoy baking and decorating, as well as tending my raised-bed vegetables and rose gardens. Our yard is also a certified wildlife habitat, home to bunnies, bees, and various bird species. Watching all the seasonal changes in the flora and fauna is also pleasing. I now have more time to slow down and appreciate all of this.

I can continue my quiet pursuits of reading, listening to music, watching movies, and snuggling my kitties. However, I’m continuing to add to my list of pleasures I can enjoy outside or with family and friends.

Therefore, I believe that all I really needed was a change of perspective. Rather than thinking about everything I can no longer do easily because of my health, I’m focusing on all the amazing things I can still enjoy every day. I hope that you, too, can find your own joys while living with a rare disease.

Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.