Disease Progression

Recently, it has become much more difficult for me to use the commode. Even though it is just one step from my bed, attempting to use it under normal conditions involves extreme difficulty breathing, muscle weakness (due to cellular fatigue), shaking, and a constant battle to maintain consciousness. Nevertheless, I have been determined to continue … Continue reading Disease Progression

Birthday Madness

This week was my birthday. I'm trying not to think about the time that's passed since my last birthday, since I've been home/bedbound the entire time. To be honest, I'm not exactly thrilled to be here for this event. Don't get me wrong - if I thought for a moment I could get better and … Continue reading Birthday Madness

Advice For Nurses Working With Severe ME Patients

The experience of having regular visits from hospice nurses has been a wonderful one, for the most part. The nurses who visit me are skilled, compassionate, intelligent, kind, caring, and just plain good at what they do. Considering I am their first ME patient ever, things have gone extremely well. Several individuals at hospice have … Continue reading Advice For Nurses Working With Severe ME Patients