Tuesday, January 25, 2011

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.


LastStand said...

I was always the exact opposite, I love the night and could live without sunlight most of my days.

Its heart breaking reading what you are going through. I can't imagine what dealing with that would be like.

If it helps, I'm thinking happy thoughts for you.

Anonymous said...

just wanted you to know that, no matter what happens, you will always be superwoman to me.

i love you and ill talk to ya soon


Cheryl said...

You're super-scared, but fight it by being super-busy. I would do the same. You're living life. Grabbing it by the horns. I have so much admiration for you for fighting for the life you want. I don't know that I could. And no matter what, even if your life changes and your abilities become more limited, you'll still be you. And we'll all care just the same and you'll still be as special as ever. Awesome you. I hate that you're in pain, though. Hate it.

Jules said...

Hey Jamie ~ I had you on my mind all day today. I sure wish you lived closer. I would love to cook for you, cheer you up, knit you cozy slippers, make you Jello-Shots ;)

Know that I'm praying for you and for tomorrow to be a better day.


JTS said...

Dearest Jamie, I would worry about your mental health if you weren't super-scared. I think that's the most realistic approach to life you could have at the moment. There's not one of us who believes you are super human and above all that, but rather we admire the hell out of you because you are so determined to keep going as much as you can for as long as you can. Surrender is not an option for you and I'm glad, it takes a fighting spirit to keep you strong. I also know, as you do, that when and if the time comes that your life is more limited in any way, God will be there to walk you thru it every step of the way. Keep warm, and know that you are loved and being raised up in so many prayers every day! HUGS

Leann said...

Jaime, you may be super scared but you still remain super woman. It takes a strong person to continue on a positive course when everything she knows points to a not so positive outcome. It is that strength which gets you through and creates miracles. Never stop believing in miracles. They are real. They come in little and large appearances. Never discount the power of the mind. It does great things. I am proud and admirable of the things you do every day. Be proud of yourself as well. Take care of you.

Blessings to you Jamie.

Just Me said...

I wish I words to help you, Jaime. Like others have said before me, you are Superwoman, and a super woman, even if you don't think so. Hugs!

LL Cool Joe said...

You are a super brave woman to me.

Sorry I haven't been here for awhile, but I haven't stopped thinking about you.

I know you are going to fight this damn illness all the way.

"Professor" M. said...

Have you ever gone to a neurologist? These symptoms reminded me of my multiple sclerosis (which is not the end of the world diagnosis it used to be - trust me - I have lived with it for over 13 years with minimal effect thanks to amazing new medications)- just wondered if you had ever had a doctor recommend a neurologist. Best of luck. Stay positive! I will pray for you!

1Roman said...

Professor M might be on to something. I was recently diagnosed with MS but after a bad reaction to medication I am doing my best through alternative therapies. I will pray for you too! Best of luck!

Mary said...

I re-read your blog this morning. I wish I could offer a magic potion to make the pain away. Alas, I don't. I can pray and picture beautiful things for you - and I do.

This is one of the times that the mother in me wishes she could just hug you and make it all disappear. We love you.

Anonymous said...

Checking in and catching up.

Got no words of wisdom but thought you should know this one thing....

I think you are amazing!

Just so you know, I keep up with you on Stalkbook. Can't comment there. ac gotz stalkers. ha!

Hang in there Jamie.

That's my plan too. :--)

Hugs! ac