First, I'd like to say thank you for writing this. I'd also like to add a little for others who may be in a similar situation.
Just to set the background, I'm in my mid-40's, was a responsible adult, and had a house and family, and worked as a programmer for 15 years. I was fairly typical as a programmer -- a bit overfocused, had an excellent memory, strong reading skills, etc... I wouldn't say I was a great programmer, but I was a solid, competent programmer at the senior-ish/lead level.
Initially I was diagnosed with sleep apnea. Once I was on a CPAP machine I had periods where I'd sleep more-or-less normally, but I'd still go for periods or three to six months without normal sleep. This went on for three years or so. During periods of extreme fatigue my immune system would collapse and I'd get sick at the drop of a hat, and normally small things would make me really sick. Well, that was pertty horrible, but not too bad, really. I could get through it and, once the CPAP was set up correctly I'd eventually come back to normal after a few months.
I'm not really sure, but I think that sometime in that period I picked up a disease like chronic fatigue syndrome or mono or something that made it so that fatigue and confusion cause real trouble in my life. My memory is crap, and is simply gone most of the time. I have an extremely hard time getting focused and oriented. It's destroyed me financially, emotionaly, and caused a whole bunch of damage in my life. I'm just barely getting by and living in my van.
Sometime I'm better than others, but I go through these periods of extreme fatigue, where I mentally "fade out". My memory gets extremely bad and I forget things within seconds or minutes. I have trouble recognizing faces, names, etc... as well as just getting myself organized and functioning like an adult. There are periods where I come around and my brain starts working sort-of normally again, but it doesn't seem to last for very long.
I've seen seven or eight different doctors, ending three years ago when I lost my job and ran out of money. I didn't had any luck getting any of them to take my condition seriously. I'd tell them that something other than sleep apnea is going on, but they can't find anything, at least nothing obvious, so they don't believe anything is really happening, that it's "just psychological". But I know my self better -- for example I Know I had a college level reading ability in the sixth grade. Now I have trouble remembering the title of a book I read a week ago.
I'm solidly in the "darkest fears made manifest" stage of this thing. Part of me knows I'll survive this, that this will pass and that everyone deals with sickness, old age, and death. It has been (very) slowly getting better. I still have bad periods, but they aren't quite as often or as long, or as bad, as they were several years ago. Even still, when I'm in the middle of one of these periods of fatigue and confusion I'm convinced that it'll kill me.
So, and here's the real point of this, I'm still committed to being a force for good in the world. I'm there for my kids, regularly volunteer, and stay involved with helping other people. Like you say, mortality is the ticking timer that keeps you alive.
I'm not trying to do that "diagnose you over the Internet" thing, but did any of your doctors ever mention or look into autonomic nervous system issues? Reason I ask is that what you describe is somewhat similar to the kind of cognitive impairment ("brain fog") and fatigue I experience with dysautonomia. Although it sounds like your symptoms are much more extreme, they're not inconsistent with what I've seen other patients experience.
For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.
Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.
In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.
Good luck, and good for you in still fighting to be a positive force in the world and for your family.
This is incredibly frightening, as I had mono when I was 26, and have never felt as "sharp" afterwards...just been telling myself all in my head, or a part of getting older
My story is very similar to yours. Seeing a sleep doctor I was diagnosed with Idiopathic Hypersomnia, then later Narcolepsy.
Same memory issues, mental health issues, physical health getting worse year after year throughout my whole 20's. I found out just a few months back I actually had Lyme disease for almost a decade, that had gone undiagnosed and untreated.
FYI: acute diabetes has the same symptoms (fatigue, memory loss, fade out) as you mentioned, and is easy and cheap to diagnose with a blood test. Skip sugary drinks and candy until you get a test.
I've seen a neurologist who my GP thought highly of, but it quickly turned into probably the worst doctor's visit I ever had.
About ten minutes into the exam he told me that it was either depression, or sleep apnea, and that I was just looking for a way to get out of working.
I'll admit that the Part of it was my fault -- I was beyond exhaustion and not exactly on my best behavior. But I also had seen maybe eight different doctors before then, and, other than sleep apnea, had been misdiagnosed and mistreated for several things already. My GP didn't seem to believe that there was a real problem, and I was just falling apart physically, financially, and emotionally.
That's about where I gave up hope of getting useful medical help, and decided that I was just going to tough this thing out, and if it kills me then that's just how it goes sometimes... Not a smart choice, but that's where I was at the time.
Any way, that was then, this is now. Writing these posts has gotten me to think about how long this has been going on, and, now that I'm more clear-headed, it's time to start seeing doctors again and see if I can get this fixed.
Just to set the background, I'm in my mid-40's, was a responsible adult, and had a house and family, and worked as a programmer for 15 years. I was fairly typical as a programmer -- a bit overfocused, had an excellent memory, strong reading skills, etc... I wouldn't say I was a great programmer, but I was a solid, competent programmer at the senior-ish/lead level.
Initially I was diagnosed with sleep apnea. Once I was on a CPAP machine I had periods where I'd sleep more-or-less normally, but I'd still go for periods or three to six months without normal sleep. This went on for three years or so. During periods of extreme fatigue my immune system would collapse and I'd get sick at the drop of a hat, and normally small things would make me really sick. Well, that was pertty horrible, but not too bad, really. I could get through it and, once the CPAP was set up correctly I'd eventually come back to normal after a few months.
I'm not really sure, but I think that sometime in that period I picked up a disease like chronic fatigue syndrome or mono or something that made it so that fatigue and confusion cause real trouble in my life. My memory is crap, and is simply gone most of the time. I have an extremely hard time getting focused and oriented. It's destroyed me financially, emotionaly, and caused a whole bunch of damage in my life. I'm just barely getting by and living in my van.
Sometime I'm better than others, but I go through these periods of extreme fatigue, where I mentally "fade out". My memory gets extremely bad and I forget things within seconds or minutes. I have trouble recognizing faces, names, etc... as well as just getting myself organized and functioning like an adult. There are periods where I come around and my brain starts working sort-of normally again, but it doesn't seem to last for very long.
I've seen seven or eight different doctors, ending three years ago when I lost my job and ran out of money. I didn't had any luck getting any of them to take my condition seriously. I'd tell them that something other than sleep apnea is going on, but they can't find anything, at least nothing obvious, so they don't believe anything is really happening, that it's "just psychological". But I know my self better -- for example I Know I had a college level reading ability in the sixth grade. Now I have trouble remembering the title of a book I read a week ago.
I'm solidly in the "darkest fears made manifest" stage of this thing. Part of me knows I'll survive this, that this will pass and that everyone deals with sickness, old age, and death. It has been (very) slowly getting better. I still have bad periods, but they aren't quite as often or as long, or as bad, as they were several years ago. Even still, when I'm in the middle of one of these periods of fatigue and confusion I'm convinced that it'll kill me.
So, and here's the real point of this, I'm still committed to being a force for good in the world. I'm there for my kids, regularly volunteer, and stay involved with helping other people. Like you say, mortality is the ticking timer that keeps you alive.