Respecting our physical limitations, even when they’re frustrating

I recently helped a colleague with an exhibit at a fall festival. The venue was an assisted living facility, and we provided games and treats for the residents and children in the community. Our inflatable blue pool with colorful plastic fish made for a fun fishing expedition for all who stopped by.

It was a lovely afternoon. The fall breeze was a welcome change from the heat of the New Mexico desert. Vendors gathered, setting up their spaces with games and treats. And before I knew it, it was time to prepare to leave.

I gathered the individual packages of sweet treats and marketing brochures and placed them in bags to carry to the car. We emptied the cold water of the pool, and I scooped up the fish and the little fishing poles. The last item to pack was our folding table.

I placed the table on its side and slid the brackets to allow it to fold flat. With hesitation, I grabbed the handle in hopes of carrying it to the car. I soon realized that while the table wasn’t extremely heavy, the weight was too much. Embarrassed, I told my colleague that I shouldn’t carry the table, and without hesitation, she took it to the car.

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October 23, 2023 Columns by Allyx Formalejo

Accepting limitations is a difficult part of living with chronic illness

Unless you walk behind me and see the scar running down my spine, you wouldn’t know I have physical limitations. Admitting them often makes me feel less than. But it’s also a testament to my resilience, a reminder that I’m more than my scars.

Almost one year ago, I had spinal decompression surgery. I had lost feeling in my arms and hands, and the pain was excruciating, making it difficult to manage daily life.

The surgery was a success. While I continue to live with chronic pain, I feel better than ever. However, I’m afraid to push myself past what is comfortable. I never want to be in the same position again.

Most people face some sort of limitation, whether it’s with time, money, or physical ability. We don’t always pay heed to what we can do, and too often, we push and wear ourselves out.

Choosing not to lift the table reminded me of the importance of acknowledging and respecting limitations. It’s a lesson that helped me connect with my youngest son, Caeleb, who lives with hemophilia.

Living with limitations

Caeleb is a sophomore in college. He is living on campus for the first time, and watching him navigate accessibility (or lack thereof) is impressive. I sometimes forget that he, too, has chronic pain from years of damage to his joints. Bleeding into the joints is common among those with severe hemophilia, and once blood fills the joint, irreversible damage can happen.

Unfortunately, Caeleb’s bleeds have caused the cartilage in some of his joints to deteriorate to the point that his bones rub against one another. This may sound like the plight of an older adult, but it’s what Caeleb endures daily.

I know what it’s like to lie in bed, taking deep breaths and praying that I can get up and make it through the day. This isn’t the case as often since my surgery — something I never dreamed possible. But Caeleb also experiences this, and his pain won’t get better.

Winter is worse, but even in the heat of the high desert summer, he can find himself hurting so much that he can’t get out of bed. How I want to take this away! I empathize with my son. We often talk about pain because he has seen me at my worst. His compassion and understanding have always been tremendous.

Living three hours away from Caeleb brings challenges. I want to be in closer proximity to him, but the distance is helping him learn to manage his condition as an adult.

There are moments when I feel utterly helpless — when no prayers, words, or gestures seem enough to meet the depth of my son’s suffering. Those moments remind me that I wouldn’t wish such limitations and helplessness on anyone.

So many people walk around every day in unimaginable pain. I understand. With limitations that are often frustrating, sometimes getting up is an incredible act of strength. You are not alone, and I applaud you for each day you can get up. And for the days you can’t, I get it. I pray the next day is better.

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.