I'm going through some big changes here, and not necessarily good ones. My initial version of this post was looking quite different, but things haven't played out the way they were supposed to, and to be honest, I'm in a bit of a mess. Here's the deal: Medicare recently made some nasty changes. Because of … Continue reading Big Changes
Rough Waters
Lately we've encountered some rough waters here at my place. I apologize for being behind on comments. I assure you I am working as much as possible to get caught up. Please never feel bad if it takes a few days, or even a week, for comments to be approved or replied to. I'm simply … Continue reading Rough Waters
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
Reaching Out for Support with a Misunderstood Illness
I promise I have some new posts in the works! Meanwhile, I just had to share this excellent post by a good friend of mine. Please read, share, and follow her blog if you haven't already. I promise it's well worth the energy! Hugs to all...
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
Vivid Dreams
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
Tips on truly living from bed
There are plenty of things to do from bed, even when living with severe ME.
Life Past Your Time
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
Our Most Recent Dilemma
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
Documenting M.E. 