Making Adjustments to Take Advantage of the Good Weather

My disability, caused by damage from neuromyelitis optica (NMO) attacks, often prevents me from fully participating in social events, outdoor events, and other activities. However, I still choose to participate in some of them, rather than not participating in any. This isn’t to please others, but rather to avoid feeling isolated.

I can tell that some people think I’m being antisocial when I decline invitations to do things. But I do it because I believe it’s the better choice, given my health. Logic tells me I probably wouldn’t have the energy to do whatever activity I was invited to do that day, such as walking long distances in a big city.

Because of NMO, I often suffer from fatigue. I must prioritize my work, tasks around the house, and spending time with family. Therefore, I often don’t have the energy to spend time with friends. I’m not proud of this, and it has caused feelings of isolation.

That’s why it’s important to create a balance between daily responsibilities and spending time with friends. I realize that when I fall into a pattern of following my daily routine without socializing, I grow lonely and feel sad. Even introverts need to have other people in their lives.

I hope to take further steps to allow myself to participate in day trips and other excursions that I’ve previously avoided, as long as they’re safe and enjoyable.

Safety is important. I’ll give you an example: A few years ago, I didn’t know exactly how severe my condition was. On a hot summer day in Florida, I was sitting under an umbrella next to a swimming pool. People in the pool looked like they were having so much fun, so I thought, “What the heck! I’ll just join them in the water.”

I ended up enjoying the pool so much that I forgot how hot the day was. That night, my symptoms worsened, and I ended up in the hospital with an NMO relapse. I now take precautions to avoid the heat, which worsens my NMO symptoms.

Mileidys visits Boston earlier this month. (Photo by Mileidys Almaguer Iniguez)

Last Saturday, I went to Boston early in the morning to walk around the city before it warmed up. It felt amazing to be near the water, but as soon as I walked into the city, the temperature became too hot for me. The heat was like anesthesia in my legs. It felt like I didn’t have legs! After lunch, we decided to go home.

This is an example of things I used to do before I got sick. But by making some adjustments, such as avoiding the city during the hottest hours of the day, I can go for a walk as long as possible. I don’t necessarily have to cancel plans for a trip because of the weather if I can figure out a way to do it safely.

I know I have limitations, but I can’t just stay at home all the time. I live in Massachusetts, a state that has long winters. I need to take advantage of the good weather we have while it lasts. Loneliness and isolation are not a good combination for my mental health while I’m dealing with NMO.

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Note: Neuromyelitis 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.