Wednesday, June 17, 2009

I've been feeling great. I've been loving life. And, yet, I have MS, so I am ill, right? 

One of the most confusing and baffling aspects of my having MS is the discrepancy between how I feel/look/am. Right now, for instance, I am in full remission; I am having nary a symptom and emotionally, too, this last month I have felt better than I have in months. So, what's the problem? Well, it's that there are odd off-and-on moments when I am forcefully jolted back into the  realities of having MS and I am floundering with how to communicate this dual reality to both myself and to the people in my life. How do acknowledge my limits to myself? How do I express my limits? How do I communicate the complexities of my internal realities? 

Perhaps the best metaphor I have come up with for my experience is that I am a very full tea cup, full to the brim with tea. I loose sight of how full I am for quite a while and go merrily charging around and enjoying my life, full of vim and vigor. That is, until I get an extra splash on top of the already full tea cup--it could be a piece of unwanted advice about MS, and the whole cup spills over--sploosh. Suddenly, I am very aware of this underlying reality, the very full tea cup. It's so easy, then, to try to blame, regulate, or yell at the splasher--don't give me advice, don't talk to me, don't bring up "X". 

There is a place, absolutely, for boundaries and understanding my own limits as well as clearly communicating my limits to the people in my life. Yet, at the very same time, it is important, essential even, for me to recognize that the problem really isn't so-and-so's advice as much as it is MS itself. MS--symptoms, worries about the future, precarious healthcare, potential disability, job security or lack there of and on and on and on--are filling the cup. The splash is really the least of my problems, but it does stir up the whole cup and make me aware of the complexities, contradictions, etc. of the problem and my impulse, my knee-jerk reaction is to try to regulate the splasher and the splash.  "See, see what you've done," I want to shout, to holler. 
But, of course, no one has done anything. It just is. The MS just is

The people in my life can love me, they can hug me, they can help out if and when I ask them to. The doctors can advise and give me medication. The therapist can listen and the trainer can help me build a workout program. But the only person in the whole wide world who can drain the tea cup is me. 

There are things that aggravate me now in ways that they never had before and that includes advice (have you tried...I just read...), uninformed opinions that are not helpful (my Aunt has that and she never had any problems), and tirades and venting that is circular and without resolution. 
I have also been keeping a list of what helps drain the tea cup and it includes the very basics: adequate sleep and quiet down time, good wholesome food, walks in beautiful nature, and time with friends, and making a dent in my work helps, too. 

So, I trying to maintain some balance between tuning into my inner realities and remembering to stay tuned to its frequency, so I can clearly communicate and yet at the same time, stay grounded in the world and enjoying this respite from being actively ill.