Monday, October 1, 2012

It's Not too Late

Fall in upstate NY!

This view certainly takes me away for a few moments! Fall time is just an awesome time in nature and in ourselves.

You know, life is an amazing thing. I have felt as though I had to turn 40 before anything really registered. In other words, maturity, wisdom, clarity -- it took a long time for these things to resonate in my mind. This also extends to my interactions with others, personal triumphs and most importantly dealing with a chronic illness -- the one that seems to have baffled the best of them: MS.

I wish I could say that all MS is created equal. Hardly! All the literature emphasizes how no two people have the same symptoms, prognosis..."my" MS, "his" MS etc, almost as though one takes ownership of "their" MS. All this is definitely true. Sometimes I feel that anything anyone says about MS is something I have heard many times before! Interestingly it is just frustrating. Maybe those are my own feelings and not something others share. Maybe I've had MS for almost three decades and get bothered by persons who don't do their best to move on. Then there are some who move on in such a dramatic way.

I can feel "left out" when those persons with relapsing remitting disease end up turning their life around in profound ways. Those of us with progressive disease may have incurred some damage and disability and do not move on in the same way. I'll tell you though, I have read some unbelievable stories written by persons who go from using a scooter full time to walking and riding camels in the Gobi desert in Mongolia! I am not kidding you. How is that possible? Maybe they didn't have MS or my "type" of MS -- obviously not!

Why does this bother me so much if I am supposedly moving on? It must have to do with life being unfair to me, do you suppose? There are days when I think I have reached that important stage of acceptance. Then why do outrageous stories like the Gobi desert make me angry? I think it must have to do with feeling left out or the inability to reach the same end. Actually, I don't even know if this story is true. How can someone with heat intolerance ride a camel, stay on the darn camel and have enough energy to get around afterwards. Maybe this person doesn't have heat intolerance. There is a  percentage of people who don't have that problem. Just like some people are lucky enough not to have foot drop. I am purposely letting myself rant before I make my next point.

George Jelinek, MD and Roy Swank, MD were not important figures to me when I needed to hear their approaches. Actually, I had never heard of them. Instead I followed pharma road. Who knew? I thought medicines were supposed to help. That is WHY I am so angry. Now it comes out that interferons do not slow disability. I feel like I wasted ten years doing that, obviously since I am now secondary progressive.  Maybe others don't agree with me. I am not angry at others who are doing well, I am angry because I was too young and didn't know which path to follow. Had I started a lifestyle changing approach it may have yielded better results. How do I know? Because I am doing better than ever now than at any other point in this process.

I may not be doing as fabulously as people who implemented life style changes earlier than I did but at least I did. So even though I have symptoms, I feel pretty good. Maybe that is my life lesson. I pulled up my socks just in time. Others out there still can make some lifestyle changes and figure out how to do the rest.

My journey may be different than many other MS'rs and our condition may differ but I think we share a common goal, to be happy in life. There is a compassionate way to achieve that instead of trying various medications with horrible side effects.

It's not too late to try another way.

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