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Monday, October 6, 2014

Living with MS

11 years ago, almost day for day, I was sitting in my neurologist's office and receiving the diagnosis:  I had MS...  recurrent-remitent form. This diagnosis, although I wish it would have been otherwise, was actually not surprising me... for 6 years prior to that, I had had symptoms of MS that doctors would account to viruses and stress... depending on the symptom... and the doctor!

This, was, at the time, the worst day of my life...  little did  I know at then, that it actually was the best thing that could happen to me!

I can hear you think...  "wow!  she really is gone crazy!!!! How can an incurable neurodegenerative disease diagnosis can be the best day of her life???"  Well it had me changed the way I live...  and for years, I have make changes....  to my diet... to my lifestyle...  and as a result I am here and now!  I do not wish to go through all the details as they can be found in my book "Life Happens: Living a Healthy Life Despite a Chronic Illness" that you can find on Amazon here. (hard or soft cover... or kindle) but what I wish to acknowledge is that have I not receive this diagnosis, I know that I would not be here and now... because any fixed point in the past will influence your future and would it be different, you future would be to!  I will never know how different it would be... but what I do know is that looking back, I can see that I was lost and completely off track from what I had wished for all my teenage years...  I was becoming someone I always hated...  I was becoming what people were expecting... and what society was expecting...  I was becoming those people I dreaded as a teenager and young adult....  I was becoming who I swore I would never be... 

And now, I can say that who I was becoming is gone....  and I am now giving myself the chance to be who I dreamed about.... and this is wonderful!  Why did I needed such a diagnostic to let me be who I wanted to be I will never know... and that is not what matters most.  What matters most is that I know I am back on track... and although not quite the extremist I dreamed about at 17, I am not far... and I know in a few years from now I will be that person... breaking walls is not any easier as you grow older.  Although I have no one to answer too, I have all those patterns and models of HOW things SHOULD be... and this is the REAL wall I have to break.

Now following my diagnosis, I had different reactions to it and this is something I never really shared with anyone...  but my husband...

First I wanted everyone to know... to get their empathy.  Instead I got their pity... not quite the same and NOT desirable at all since it was bringing on self-pity and I was getting worse and worse...

Once I had enough of the pity, the timing was fortunate enough that I also got laid off and had to start over in a new environment.  At that point, I decided not to tell anyone...  EVER!  Only because I did not wanted to have pity from anyone anymore and also because I wanted to go on with a normal life.  Little did I know that life cannot be normal with a neurodegenerative disease...  even though it looks like it.  Therefore I started feeling lonely...  and like I was lying to people around me...  pretending to be weird just for the fun of it (at the time I was vegetarian and opting for minimalism slowly)...
when in fact being different was somehow forced on me for greater goods.

At one point I decided to let people know again... slowly... and people who I trusted not to be different with me... and that was the best approach! Until I came out with the book.... and all the social media implication... and now everyone I meet can easily know that I have MS and published a book... and that is OK now because I do not need anyone's empathy... and I do not care for their pity... nor do I acknowledge it! I can assume being different because I have my reasons... and mostly because having MS has actually been the best thing that happen to me (aside from my son and husband of course) and I would not change it... and despite what people may think or fear for me, I do not have those fears anymore... I am in control!  MS no longer is!

I have been medication free 7 years, no crisis in 9 years and not one single symptoms in 6 years...  This is amazing!

And because they say that the way you are 10 years after your first crisis is most likely to dictate how you will be the rest of your life... I have hope....  My first crisis was in October 1997!!!  17 years ago!

Because I do my yoga, eat vegan, live a simple stress free life I know that I can control this beast!

And I know that most of you who are reading this and have MS could do the same!  If only you gave yourself a chance!  It is not easy... it requires changes... sacrifices... or choices (like I prefer to call them)... but in the end, you have everything to WIN and nothing to loose!

Take charge of you life....
Be in control...
Let no one decide for you...

Now, at this point, I am working out the courage to go for another MIR... and see the results.  According to some informations I have and some other patients who took a similat path, the actual lesions to my brain that were observed 11 years ago could have shrunk or disappear...  I would like to find out for sure but I am afraid of the answer... and if they were still there...  how would htat make me feel???

thanks for reading!
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  1. Hi. I enjoyed reading your post. It is encouraging to me. I too have a medical condition but not as severe as ms. Personally I think you should go in for another MIR. I would want to know. Regardless i wish you the best of luck and many years of healthy happiness!