De’Nile.. not only a river in Africa..

I think that some times inside, I’m like that little kid you would see at a grocery store throwing a temper tandrum… Kicking and screaming and fighting the whole way…

Not vocally mind you, and I don’t think this struggle is appearant (least I hope not) to anyone but me, but it goes on none-the-less.  Growing up, I never imagined MS being a part of my life, but then who would?  I don’t want to veiw myself as sick, or less than able to accomplish a given task. It is frustrating that sometimes – what used to come so naturally, I now have to spend time “convincing” my left hand/arm to do as I instruct, or pay more attention to the placement of my feet, because I can no longer trust that whatever they “feel” is accurate. I used to dance.. I don’t attempt it anymore.. but who knows.. maybe thats a good thing.  🙂 .. (see I crack jokes, but it actually does make me kind of sad sometimes.)

For someone who has always kind of been a “Mind over Matter” and “Cause and Effect” thinker, it can be entirely frustrating that this disease doesn’t work that way. It is so unpredictable, and waivering. Not something you can put your finger on, or neatly organize or rationalize out the question of “Why did this happen?”  I really dislike things like that. I tend to want to know why, and know how to prevent it from happening again, etc..

Lucky for me this time around, I pretty quickly I had reached the point where I no longer cared so much to answer the “Why me?” part. All the research I found and there still doesn’t seem to be any real solid answer to that question in anyone’s case. In all honesty, it doesn’t matter now.  It just is what it is, and the only one that really knows isn’t going to be telling me anytime soon.

But it’s easy to get caught up in the “Why me” phase, many people in many different situations spend a lot of time there, torturing themselves into darkness. 

For me though, it is the next logical question of “What now?” that seems to linger on and on and on.  My first answer was diet change… which was dramatically changed. It doesn’t take as long as you would think for things that were once so appealing to loose their come hither power. Once you get to the point where you don’t know if you can handle the temptation anymore, you are so close that it isn’t even funny.. seriously.  If you can find the will, then you are almost home free. It made me realize how many diets are lost, right before the point they would have been successful.  I kind of think of it as like when people go through those horrible symptoms of withdrawl when they are trying to come clean…  so close…

Now I will say that for me it was a little easier, as I noticed right off the bat that my more obvious symptoms seemed to quiet themselves tremendously when I avoided certian foods.. (not that they would go away totally mind you, but seriously was able to notice quite a difference pretty quickly, so that drove my inclination to keep up the diet changes).

The second answer, that.. well wasn’t my answer but was at the urging of my neurologist and family was the daily injections of Copaxone… which I hate.. but I guess it could be worse.

My own philosophy is that I the diet changes in the end will be what helps me the most.  The Copaxone, kind of acts like a decoy for all my renegade cells to attack, instead of focusing on my myelin sheaths. Many disagree, but it is my hope that in paying closer attention to my diet, I will encourage my body’s natural healing process to start working better… and maybe that my immune system will hopefully straiten itself out a bit.   Thats the my dream anyway ^^

All of that to get to this point where I really explain the title of this post…. /sigh.. sorry about that, I need to work on the rambling..

All the research, all the time disecting my diet, and getting myself to understand the signs of my body better.. you would think I’d have it figured out.  

With this disease, there are good days and bad days, plain and simple.

it seems that especially if I’ve just enjoyed a few of the better days, that there is this river of denial that springs up and I start feeling what I’ve come to call a state of “near-normal”  In this state, I start trying to make things be “normal” again.. like they used to be.  I try to add things back into my schedule, more appointments, accomplish more chores, just plain get more done.  Which… sadly this behaivor tends to end the “good day” cycle, and in turn initiates the “bad day” cycle.

When will I learn.. ><


4 thoughts on “De’Nile.. not only a river in Africa..”

  1. In the acceptance pool, confronting MS is like being thrown in the deep end. You’re doing a wonderful job of keeping your head above water.
    Acceptance is about honesty, and honesty keeps you grounded in things that are real, and worthwhile. Denial is all about chasing illusions, and leaves you with a lot of work and nothing to show for it.
    Your acceptance has allowed you a level of self-awareness few people have, it has taught you about the fragility and resiliency of our bodies, and helped you to appreciate as a “good” day one that most would pass off as “ordinary”.
    Keep up the good work.

  2. I can really relate to what you are going through right now. I have many similar doubts and fears at the moment. I just got a therapist and she said she is going to help me learn to manage my anxiety and think more productively. Yeah!

  3. Here is something to ponder, just a bit. I am jealous of you! Sometimes, are you sitting cause I know what you are going to say, I wish I was you! You are just so beautiful. You have amazing talents and are so smart (writing), you have so much love in you it saturates everything you do, and you are so positive and intituitive. Now, I am sure with all of these things you have your good days and your bad days but I am speaking about a majority of the time. Keep up the good work (I agree w/Dr. Schieber) and keep probing forward. Keep learning and exploring. It will only serve you in the long run. Don’t ever give up. You are truly a blessing!

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