The whole truth

This has been a very long night. In fact, I hate the nighttime and I detest sleeping. I always have. I think of things I could be doing that is so much more productive, if I didn't have to sleep. Strangely though, I sleep more these days than I ever have. I suppose some of it could be due to medication but I also think my body is protesting the five to six hours of sleep I have gotten each night, most of my adult life. I enjoyed the ability to function on that many hours, these days it makes me mad that I require more like seven. In any event, this night ended about two-thirty...and that was after I forced myself to stay in the damned bed longer. I had been asleep for a few hours when I woke around midnight, wanting to get my day started. This happens more than I care to admit...it makes me look like a lunatic. I live directly across from several bars and restaurants, and through the giant windows, I can see the party winding down while I am beginning my day. Looney much? Perhaps. Of course, my day yesterday was spent in and out of sleep which is not a normal occurrence for me, since I generally am working. I found myself unable to do anything yesterday, even as the day wore on. My early issues persisted through out the day, which does not generally happen. Usually if I am having an "unable" day, the problems will ease as the day wears on. Yesterday was not that way. This morning, I am better. Not great, not ready to hit the treadmill by any means, but better. I hope that the trends continues and I am able to carry though the whole day.

I am trying so damned hard not to get down about it all. I struggle not to think about the reality of it all and usually, I can manage. I can pretend there is no question to my future, that I can and will be physically normal for the rest of my life, and the truth is, I could. There is a chance that my problems will never progress any further than what I deal with now. But if I were to be honest with myself and you all here, I would tell you that is not the case. I can feel, see and sense the changes taking place in me. I do believe that my insistence not to give in to all of it helps, and that has been backed up by my docs. I have been given the green light to continue at the gym, to do all I can, every day I can manage. Because there really is no set recipe, no pattern to ward off progression. And as my doctor said, "I have to believe that working out can only help". So, I do what I do with the blessings of the medical profession. Not that it would matter really, I tend to push with or without their seal of approval. Because I have a myriad of problems, the most serious of which is a deteriorating spinal cord, who really knows? There is no real name for what I battle - myelitis is the closest label, but there is no known cause or cure. And seriously, the progression of it is slow, but noticeable, at least for me. If you think that every little movement of the body travels from the brain through the spinal cord, maybe you can get an idea of what this is all about. So far, most of my issues are waist high and below. I deal with times that I cannot feel some parts or all of a leg, some parts or all of my feet. Some days I am too weak to stand up, who the hell knows why. Some days, and this one worries me alot, I cannot tell when I have to pee. There is no feeling there whatsoever. On other days, I can feel things that aren't there. I feel things that are hot or cold, but they aren't. Or wet. And yet, there is nothing hot or cold or wet any where near. Some days, my feet or a foot vibrate. Or my legs shake. And the pain is never-freakin-ending. It is relentless, although I handle that better than the rest of it. And on and on and on...why do I write about these things? To explain to you all why I am so fiercely determined to change the course of what's happening to me. Can I really, truly do that? I have no idea...but to me, to sit around and wait for the days that I need wheels to get around while I may or may not be wearing a diaper? I cannot live with that. I am not stupid enough to think that what I do is a guarantee. But so many times in our lives, all we are left with is, "I did all I could". So, that's where I am. I thank you all for thinking that I am this strong, superwoman type of person. But I thought it time you all know the real truth. I am not a super-woman. I am a super-scared-woman. Later.