Wednesday, December 1, 2010

Neurorehab takes its' toll!

Since I'm now over the full on analyzation of what having the 'liberation procedure' done is going to achieve, it's time to turn the page. Having the procedure done I have found is not something that keeps changing. Once the initial improvements were realized, that's pretty much it for me I'm afraid. And as I've said before, now it's on me if there will be any more improvements in the way I function and my quality of life. So enter the Kettering Neurorehab and Balance Center. Going to this type of therapy has been wonderful and heartbreaking all at the same time. Wonderful in that there are things they have me doing that actually impact my QOL positively, but heartbreaking in that doing vestibular exercises and some of the rehab puts a marker on how far my central nervous system has deteriorated. And don't kid yourself, your CNS controls everything. I mean everything. We all have our own hard drive and MS messes with that. So it really sucks when something is screwing with it. I can't just reformat it, although that approach has been tried (google - revimmune).

Exciting things like standing in a stationary position with one foot in front of the other and staring at an object on the wall are just some of the stuff that I'm doing. It really makes you realize how far things have gone awry when you can't even do that without falling over. But the rehab of my vestibular systems is what's going to hopefully help me be less dizzy and have better balance. My big muscles are still strong. We did strength and endurance testing and I'm still in the 70th percentile compared to healthy controls on things like a 4 minute walk and things like that. So that's heartening. But it's awful disheartening to not be able to stay on your feet when your feet are together. It just is what it is to be cliche.

But the good thing about all of this stuff is that it is allowing me to work on what I really need to work on to keep functioning. My old self just wants to push out reps on the Bowflex and have that be a panacea for what ails me. But that doesn't get it anymore. I need to attempt to work on those parts of my brain that aren't allowing things like balance and stability to work right. It's hard to be able to bench what I pretty much always have, but not be able to do leg lifts. To be able to hamstring curl a normal amount of weight, but not be able to walk a straight line. No pain no gain still applies, but it's not simply a matter of just working to exhaustion like it used to be. That is detrimental now anyway. So I'm doing things like laying on my side and lifting my leg off the floor about 2 feet for a five count because my hip muscles somehow have about disappeared. Things like standing with a hand on a chair and lifting my leg up until my knee is bent at a 90 degree angle. Dr. Lew simply does not have the answers to make his body right anymore. Until I went to this place, I had no idea that my quads were just peachy, but my hip flexors have all but gone away. So all the things that can fix whatever ails a body coming from a healthy place are what I'm good at. I suck at figuring out what to do in this arena.

So my new therapist is setting me straight and it's eye opening. Self perception on my part is all but gone. I still THINK I can do way more that I actually CAN. That's good in some ways, but it leads to me doing too much on a daily basis. I'm learning that I need a massive amount of breaks when I'm doing something. I mean one load of clothes folded and to keep from being in pain or going to a place where it will take hours to recover I need to take breaks all the time. That shit is im-freakin-possible for me to do let me tell you. If there was ever someone born with ants in their pants it's me. I used to watch TV standing at the mantle for God's sake. Seriously. That way at commercials I could bolt off and do something; what? who knows, but something. I have more nervous energy than five people I believe. I just don't like to sit down. Well my hand is being forced because I don't like being in pain or being wracked with vertigo either. So I got a little 'sand' timer like Days of Our lives. When I need a break, I have to pull that dude out of my pocket and wait for the sand to finish dropping. It's so much harder for me to do than it sounds!

So here we are. My disease has forced major, actual behavior changes on me once again. I'm OK with it don't get me wrong. I really have no choice so it's not like I can choose another option. Well I could turn into a completely sedentary blob, but I can't do that either. Not until my hand is forced that way since that's always in the back of an MS patient's mind. It's just so different to be 'rehabbing' without the thought of functioning BETTER. I mean this is to make is suck less, which I suppose is the better option than to just let it suck to it's max. potential.

But it does give me some hope. And you all know how I feel about hope. Not hope that I'm going to recover, just hope that I can function at the highest level my burned out CNS will allow. Not to mention the fact it does give me some direction and a goal to work towards. It's getting hard to be OK with all of this decline that's for sure. But once again I have to pull out my mantra of 'it could always be worse', because it surely could. So I'll be doing lots of stuff that I would have laughed at a few years ago just to keep functioning, but whatever it takes. Not really working out per se, but doing things that are supposed to pinpoint a muscle, or make a nerve fire are what I've been relegated to at this point. I have to do it, my other option is to just spend more and more time on the couch until just getting up from the seat is a chore. It could get to that for sure on its' own, but with the way my muscles atrophy, it could get that way by me sitting around too.

This disease is insidious and I hate it. But I have to look it square in the eye if I'm going to do what's right. There's no fighting MS anymore. I'm not going to win. But I can at least make sure I don't let it take me a second before the point where there really is nothing more I can do. Hard to stay pumped and motivated with that being my mindset, but nothing I can do can make me not have this. So I go back to just trying to deal with this with grace and not succumb to the dark thoughts and imaginings of what COULD happen. It scares the shit out of you when you think "if I go downhill as much in the next five years as I have the past five years, I'm flat fucked", so you literally have to learn to live one day at a time and not let you imagination take you away. Keeping those out of your head is hard at first, but not sleeping and not eating and shit makes you learn quickly how to push thoughts away and keep them away. It's all part of the one day at a time thing. Today I walked in here to make this post. So draw a line in the sand for today. I'm walking. If I can't tomorrow, I can't let it eat me up today thinking about it. I have to simply respond to what is actually going on, not what might be going on.


So I'm trying to work on exercising those things which control my muscles, and that ain't easy for sure. I'll keep you posted and let you know how it's working out, I always do!

1 comment:

I've figured out how to get everyone to be able to post on here.