My Typical Day with Epidermolysis Bullosa (EB)

This article describes my typical day with Epidermolysis Bullosa and daily life with this condition.

Every day with Epidermolysis Bullosa (EB) has its own rhythm. A large part of the day involves wound care and rest, but I try to include everyday activities that bring me joy.

Morning after wound care

After my morning care routine, I call my dogs and sit down at the computer. The younger dog is full of energy in the morning, running around with toys and wanting to play. The older dog is calmer, sits next to me and relaxes.

My mom prepares breakfast and brings it to me at the computer. While eating, I read news from the world of technology and various interesting facts.

Rest and family time

After breakfast, I often go lie down for a while for 20 to 30 minutes and cuddle with the dogs. Then I sit back down at the computer.

Mom starts preparing lunch around 11:30 AM. The eating itself takes me about half an hour to an hour. After lunch, I take the vitamins and medications that my mom prepared for me in the morning.

Then I go to rest in bed. Mom covers me with a blanket and the dogs are with me. I rest or read various interesting things on my phone or tablet.

Afternoon routine

At 2:45 PM I drink Ensure Plus Advance. Then I either sit down at the computer or rest a bit longer.

Sometimes I go to the kitchen to be with Mom. On weekends, when Dad is home too, we spend time together and talk.

Caring for the dogs and the evening

At 4:30 PM, mom feeds the dogs. When they finish eating, I give them biscuits and a dental stick.

At 5:00 PM, I take my evening pill and mom prepares dinner. I eat dinner slowly at the computer so that I don’t choke.

Every evening around 6:30 PM, I put on a movie. It’s a time I always look forward to.

Evening and sleep

At 8:45 PM I drink my second Ensure Plus Advance, which I drink slowly over 15 to 20 minutes so I don’t overload my stomach.

I go to bed at approximately 9:20 PM. Mom checks my wounds and dressings, helps me put on my pajamas, and covers me up.

I think for a while in bed and then fall asleep.

Sleep and pain

My sleep varies. Sometimes I sleep well, but there are also nights when my wounds hurt, most often on my legs.

At those times, I can’t find a comfortable position and falling asleep is more difficult.

Every day with EB is different, but my typical day with Epidermolysis Bullosa has its own rhythm.

You can find more about wound care on the page How I Care for Wounds with Epidermolysis Bullosa.