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
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
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
Lately I've been having lots of dreams. Considering I spend a large portion of each day drifting in and out of hazy sleep, this isn't too surprising. What is surprising, however, is just how realistic these dreams tend to be. Over the past several months, my dreams have become incredibly vivid. I've had ultra-realistic dreams … Continue reading Vivid Dreams
There are plenty of things to do from bed, even when living with severe ME.
To live past your time is a terrible thing Confusion, frustration, and pain will it bring Separation will come from friends who are near Relationships lost with those who are dear Time will be wasted, hour by hour Days full of purpose, beyond your power Your body decays but your heart is still there Fighting … Continue reading Life Past Your Time
Time for a personal update. First, though, I want to sincerely thank everyone who has taken the time and energy to read, comment on, and/or share my posts thus far. This blog has taken off far faster than I ever dreamed it would, and already I have met so many wonderful people! It feels so … Continue reading Our Most Recent Dilemma
One of the positives that has come out of having a chronic illness is the number of amazing people I've met through networking with other ill individuals. I've learned so many things from the sick community! One of these things is that people have different ways of facing up to the reality of being ill. … Continue reading Hope and Facing Reality
As someone currently receiving hospice care due solely to the effects of ME, it irks me when people claim ME is not a fatal disease. Many, many ME-related deaths have shown that, at the very least, this disease can be fatal. I've seen people throw around a statistic which claims the death rate for this … Continue reading Is ME fatal? A different perspective.
As someone who struggles with severe, progressive ME, one of the issues I struggle with most is giving in to new lows as the illness progresses. Over the years, I've learned this illness is relentless. It will continue to worsen no matter what I do. Sure, I can speed up or slow down the progression … Continue reading Fear Of Giving In