I have MS but MS doesn't have me. What does this mean?

I have been included in a special community on Twitter these days, the MS community.  It's funny how we all tend to gravitate towards each other. There is definitely some comfort in it, knowing that I'm not alone. I was asked a question on twitter, a few weeks back, by a young female, newly diagnosed and she is going through a tough time with her diagnosis and symptoms. She asked me what that meant, "I have MS but it doesn't have me.”  She didn’t understand how I and others could be upbeat about this disease and it started me thinking, what does it mean?  Now, it could mean different things to different people but what does it mean to me. So I've been thinking a lot lately about her question and I'm kind of at a loss.  That’s why I haven’t blogged in a while trying to answer her question is harder than I thought. 

I remember the first time someone said it to me. I was going to PT to help my balance and my therapist asked me to give a talk about MS to some of his students.  It was me and another patient of his. She was definitely struggling more with this disease than I was at the time.  If I remember correctly she had progressive MS while I was and am still in the RRMS (relapsing remitting MS), phew.  He asked me to go first.  He asked that we just say a few words about what it's like to have MS and what our daily struggles are. Now, if you know me at all, I didn't prepare anything, just winged it. I wrote down some key points I wanted to talk about but that was it. The other woman, on the other hand, wrote a dissertation. So needless to say, I felt like I was unprepared but I talked about the points of MS I wanted to discuss. The students kept asking me questions and asked me to be their "dummy" in trying out some of the therapy techniques they were learning. I had a blast!  I loved it and the students enjoyed it as well.  

When I went to PT the next day, my therapist and I were discussing the differences between me and his other patient and that's when he said it to me.  Looking back now, I understand what he meant, her life revolved around her MS, mine didn't. I’m married, have 2 healthy kids, worked full time and had fun on the weekends with friends and family. She, on the other hand, was alone. Her husband had left her because he couldn't "deal" with all the obstacles MS throws at us. Nice. Really, he couldn’t deal?  Try being the person who gets all the “fun parts” of MS thrown at them.  He at least had a choice, she doesn’t. I remember listening to her talk and feeling sympathy for her, everyone felt that way in the room but when I spoke, I had them laughing and enjoying listening to me, I had them captivated. I was having fun, discussing the highs and lows of this disease but tried to make it more informational than personal.  My MS was in the back ground, like back ground noise, instead of being the focus of my life.  The MS was there and it would remind me of that fact but I worked hard to not let it over take me, not let it stop me from being me.

Now, I’m not saying I don’t have my moments.  Of course I do.  How could I not, if you are familiar with MS and know some of the fun stuff it can throw at us, you would understand.  There were opportunities that I passed on because I was afraid that I may have an MS moment or worry about how much walking or standing would be involved.  I do regret passing on things, sitting on the sidelines again watching my friends or family have a good time without me but unless you have experienced any of this, you truly can’t understand the embarrassment, humiliation and loss of self worth you experience.  That to me, at times, can make it worth passing up on opportunities.  It still stings and hurts, feel left out at times, but what  can I do, I have MS and as well as I can control this disease, it has a way of reminding me that it’s still here.  I still can’t walk long distances, so every Halloween, I hand out the candy.  I try to find ways that I can participate in things without getting too tired.

So, I soldier on.  I still work out 3-4 times a week, I’m not letting it stop me from taking care of my self, because since I was diagnosed over 17 almost 18 years now (my anniversary is fast approaching, Nov 10th), I have lost a piece of my self.  Since the weight loss and most importantly the exercise, I feel I’m gaining a part of me back, the part that used to enjoy being very active and social. The part of me that didn’t get left out or pass on fun opportunities with my friends.  

So yes, I now can tell her that I do know what it means to say “I have MS but it doesn’t have me” because I fight, I fight hard to not let it overtake my life, my family’s life.  That’s why I worked hard to lose over 85 lbs with the help of my husband and continue to work out on a regular basis.  If I can’t have my old self back before the diagnosis, then I’m going to work hard to get pieces of it back, the pieces that I miss the most.  The pieces that don’t have me always sitting on the sidelines watching everyone else but instead being a part of it.  The part that likes to have a good time without being afraid of what might happen.  I’ve learned through all of this that everyone has some obstacle that they are fighting.  It’s just a matter of how you handle it, and I choose to fight.  At least with the MS I have some idea of what I’m dealing with on a daily basis.  It may throw some curve balls at me time to time and it can be depressing, but I do the best I can to pick my self up, dust my self off and battle on because that’s what I choose to do.  I choose to fight.  I DO HAVE MS BUT IT DOESN’T HAVE ME!