This blog may be of little benefit to anybody at all, unless you are just plain bored out of your skull. Mostly, my intention is to explain things as they involve my relocating to an adult care facility (as a person with M.E./C.F.S.), and also, what happens once I am there. I am hoping this move is temporary, but it seems as though I cannot know or reasonably predict what's going to happen next. But in order to succeed with this transition, I must embrace not knowing.
I'll try my best to keep this somewhat entertaining, while utilizing any number of positive spins. But I guarantee nothing.. nothing except my best truth. Either way, my goal is to make this a positive adventure.
Short Introduction (for those who don't already know me) -
My name is Howard, and I am .. Well, what exactly am I? How do I identify? And no, we're not talking about gender here.
Please note that Real Life up-to-date socially acceptable terminology often escapes me, as I've been stuck in bed for the past number of years. So please do not "CANCEL" me (not that I even know what that means) without first giving me a chance to explain away my misstep(s). Yes. I most assuredly shall write wrong things, but not on purpose.
For me, everything out there is still 2015. Yes, that's the last time I got out of bed (besides occasional ambulance trips to the emergency room). In some respects, my life nearly parallels the plot from the movie "Groundhog's Day" - the Bill Murray flick where he lives the same day over and over again.
So what's keeping me in bed?
I remain undiagnosed. Nobody knows what's wrong with me (likely M.E. - myalgic encephalomyelitis). And being undiagnosed affords few advantages. In the medical community, as well as in the community at large, being undiagnosed leads others to believe the "illness" is all in your head. Or in this case, all in MY head. Well, it's not (I truly wish that were the case, something fixable!). But that's not what I'll be writing about here. At least not specifically.
About Me
I am a male, just into my 50's .. but I do not feel that old. Once upon a time people used to mistake me for my son's older brother, but I doubt that's the case any longer. Anyway, being forever marooned in a bed is disorienting. Days seamlessly run together. My surroundings are always the same. Nothing is celebrated. Holidays. Birthdays. Anniversaries. Nothing.
There are no events to acknowledge. No participation in social groupings. No visitors. No showers. No going outdoors. No eating (besides the small daily amounts of applesauce necessary to ingest my probiotics - I am tube fed).
Well, I'm sure you get the idea.
Truth be told, I am likely exaggerating to some extent. I did have visitors during that first year in bed. And random people did check on me via email, by phone, and even on Facebook ..back then.
People hugged me, asked me if I needed anything, and a few even took the time to perform cursory research on the internet, seeking out a diagnosis, or better yet, a cure. Heck. back then, my wife still loved me in a normal way. She was still hopeful.
Since that time I've only had a handful of visitors. My sister's stopped visiting between years number two and three. Friends visiting? Well, I've had three instances in the past five years. I've seen my son once in the past half decade. My mother? Twice. But she's elderly, far away, and cannot drive.
Finding Fault
Admittedly, I was scared, worried, fearful, and severely depressed early on. And I probably frightened these people away. I doubt I would choose to visit someone like me under these circumstances.
The first year in bed was absolute hell. That was the "Fear of Dying" year. That was also the year without light, without sound, without much conversation at all. Industrial strength ear muffs, 24/7. That awful year drifted into Year Number Two, and then partially into Year Number Three.
Anyway, I've been at this for a long time. And I suspect there are others amongst us who have been doing battle far longer than I, suffering far worse. But it's not a competition. And beyond this introduction, I choose not to dwell in the past. I do not reference this especially painful time unless it doing so might help similarly disabled others.
In any case, I am glad that I've improved to the extent that I am able to write often, directly communicate with others, and enjoy a better quality of life these days. As in real life, it seems this existence is all about perspective - how we choose to view the situation. During year numbers three, four, and five, I became more hopeful. So mostly, I am okay with this, now. Finally.
Introduction Concluded
My focus right now is directed towards my imminent moving into an adult care facility. But that's something we'll get into with the next installment (if and when that occurs).
I do have a horrible tendency to ramble on and on (which some of you already know), so I need to self-police, limit my word count. In any case, I'm hoping my words offer value to somebody, a means to distract, or possibly even encourage others similarly situated.
I may or may not be able to respond to individual comments (assuming there are any), but please know, I'll read each and every one of them, as my energy and focus allows.
Giving Thanks
Lastly, I would not likely be here today if it weren't for the efforts of my fellow Phoenix Rising members. If it hadn't been for hourly round-the-clock check-ins, members performing tireless research, and receiving everlasting encouragement while being hospitalized for several weeks (2.5 years ago), I may have missed out on innumerable life experiences.
So whatever else becomes of this blog attempt, thanks to each of you for helping keep me out of harm's way. I am a mostly positive minded individual, doing his best to make this life opportunity work. But sometimes, and on certain days, knowing I am not alone is the only thing that keeps me going.
Howard
I'll try my best to keep this somewhat entertaining, while utilizing any number of positive spins. But I guarantee nothing.. nothing except my best truth. Either way, my goal is to make this a positive adventure.
Short Introduction (for those who don't already know me) -
My name is Howard, and I am .. Well, what exactly am I? How do I identify? And no, we're not talking about gender here.
Please note that Real Life up-to-date socially acceptable terminology often escapes me, as I've been stuck in bed for the past number of years. So please do not "CANCEL" me (not that I even know what that means) without first giving me a chance to explain away my misstep(s). Yes. I most assuredly shall write wrong things, but not on purpose.
For me, everything out there is still 2015. Yes, that's the last time I got out of bed (besides occasional ambulance trips to the emergency room). In some respects, my life nearly parallels the plot from the movie "Groundhog's Day" - the Bill Murray flick where he lives the same day over and over again.
So what's keeping me in bed?
I remain undiagnosed. Nobody knows what's wrong with me (likely M.E. - myalgic encephalomyelitis). And being undiagnosed affords few advantages. In the medical community, as well as in the community at large, being undiagnosed leads others to believe the "illness" is all in your head. Or in this case, all in MY head. Well, it's not (I truly wish that were the case, something fixable!). But that's not what I'll be writing about here. At least not specifically.
About Me
I am a male, just into my 50's .. but I do not feel that old. Once upon a time people used to mistake me for my son's older brother, but I doubt that's the case any longer. Anyway, being forever marooned in a bed is disorienting. Days seamlessly run together. My surroundings are always the same. Nothing is celebrated. Holidays. Birthdays. Anniversaries. Nothing.
There are no events to acknowledge. No participation in social groupings. No visitors. No showers. No going outdoors. No eating (besides the small daily amounts of applesauce necessary to ingest my probiotics - I am tube fed).
Well, I'm sure you get the idea.
Truth be told, I am likely exaggerating to some extent. I did have visitors during that first year in bed. And random people did check on me via email, by phone, and even on Facebook ..back then.
People hugged me, asked me if I needed anything, and a few even took the time to perform cursory research on the internet, seeking out a diagnosis, or better yet, a cure. Heck. back then, my wife still loved me in a normal way. She was still hopeful.
Since that time I've only had a handful of visitors. My sister's stopped visiting between years number two and three. Friends visiting? Well, I've had three instances in the past five years. I've seen my son once in the past half decade. My mother? Twice. But she's elderly, far away, and cannot drive.
Finding Fault
Admittedly, I was scared, worried, fearful, and severely depressed early on. And I probably frightened these people away. I doubt I would choose to visit someone like me under these circumstances.
The first year in bed was absolute hell. That was the "Fear of Dying" year. That was also the year without light, without sound, without much conversation at all. Industrial strength ear muffs, 24/7. That awful year drifted into Year Number Two, and then partially into Year Number Three.
Anyway, I've been at this for a long time. And I suspect there are others amongst us who have been doing battle far longer than I, suffering far worse. But it's not a competition. And beyond this introduction, I choose not to dwell in the past. I do not reference this especially painful time unless it doing so might help similarly disabled others.
In any case, I am glad that I've improved to the extent that I am able to write often, directly communicate with others, and enjoy a better quality of life these days. As in real life, it seems this existence is all about perspective - how we choose to view the situation. During year numbers three, four, and five, I became more hopeful. So mostly, I am okay with this, now. Finally.
Introduction Concluded
My focus right now is directed towards my imminent moving into an adult care facility. But that's something we'll get into with the next installment (if and when that occurs).
I do have a horrible tendency to ramble on and on (which some of you already know), so I need to self-police, limit my word count. In any case, I'm hoping my words offer value to somebody, a means to distract, or possibly even encourage others similarly situated.
I may or may not be able to respond to individual comments (assuming there are any), but please know, I'll read each and every one of them, as my energy and focus allows.
Giving Thanks
Lastly, I would not likely be here today if it weren't for the efforts of my fellow Phoenix Rising members. If it hadn't been for hourly round-the-clock check-ins, members performing tireless research, and receiving everlasting encouragement while being hospitalized for several weeks (2.5 years ago), I may have missed out on innumerable life experiences.
So whatever else becomes of this blog attempt, thanks to each of you for helping keep me out of harm's way. I am a mostly positive minded individual, doing his best to make this life opportunity work. But sometimes, and on certain days, knowing I am not alone is the only thing that keeps me going.
Howard
