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Managing my energy is very important. My fatigue is neurological, which means no amount of training will change it. Avoiding viruses (and other infections), getting 9–10 hours of sleep each night and having downtime throughout each day is essential.

I eat a high-fiber whole foods diet to manage chronic constipation stemming from low muscle tone. I enjoy this diet. I avoid choking hazards like hard candy and I sit down calmly to eat. I avoid tomatoes, pineapple, oranges and grapefruit due to Oral Allergy Syndrome. I need reminders to hydrate sufficiently and supervision to ensure that constipation is kept in check.

When I get sick, it takes me a long time to recover. I’m at risk of developing post-viral syndrome, so we work hard to prevent illnesses with lots of handwashing, sanitizer, avoiding sick people and masking when appropriate. I need treatment for fevers and specific support for respiratory and gastro illnesses.

• In hot weather, I need to stay in the shade, hydrate well and keep my time outside short.
• In cold weather, I can only handle being out for short periods even when dressed appropriately.

• Avoid roller coasters, spinning/jerky rides, trampolines and activities that cause forceful movements front to back or side to side.
• If I ever hit my head, I need to be monitored or seen by a doctor to check for issues with my brainstem crowding.

I tend to stay quiet or seem reluctant to talk about something if I’m not feeling well or if something is wrong. I might not tell you right away—so if I seem unusually quiet or withdrawn, please check in with me and ask specific questions.

• I am left handed.
• I wear glasses for distance.
• I have retention wires behind upper/lower teeth.
• I am proficient with computers, tablets, phone and other technology.
• I wear a nightguard and retainer at night.

Although I love being in the water, I do not swim because of low stamina. I’m okay paddling a little, but I must wear a flotation device anytime I’m near or in water.