Is It My MS, or Is It Me??

I went to a presentation the other day with the above title.  It turned out to be a basic introduction to MS, mainly focusing on people who are not longtime members of the MS family, and everyone attending had been diagnosed anywhere from several years ago to several decades ago.  I must say the most amazing thing about people with MS.  We can talk about ANYTHING once we become acclimated to our own MS.  The "Ambassador" who came to talk to us spent most of her time talking about catheterizing.  Lovely thought for anyone, and not something people would normally talk about to strangers!  Still, there we were, listening to her, and then we began comparing our own experiences with diagnosis.  It was really a loss to me to have the main presenter show up because I think that we MSers would have really enjoyed sharing our stories with each other.  One person didn't even get to share her diagnosis story because the presenter came in and we were basically told to listen to him.  Not in a bad or rude way, of course, but to "get the ball rolling" with the show, as it were.

I don't have much contact with others with MS.  I live outside a small town, and even the closest "support group" is almost an hour away.  I am usually too tired or too distracted to remember to go, and truthfully, there is not a lot of time for just two or three of us to talk.  If I don't "click" with someone pretty much right off, I am less likely to engage.  My brain wanders.

The people at the program all seemed to click with me.  One even emailed me later.  You see, I am making a cookbook this year for my Walk MS team, and she emailed just to say hi and to let me know she would be sending some recipes.  I thought that was nice.

So when do we ask ourselves if something we experience is MS or just us?  I say we have to learn about our own very special MS.  Each one of us has an MS that no one else has. It is ours.  It is not who we are, or what we do, and I do not say I "survive" it or "struggle" with it.  I have MS.  The weeds grow in my yard. These are facts that hold no particular weight over me.  But I have learned (and continue to learn) the difference between pain that is CAUSED by my MS, pain that is RELATED to my MS, and pain that is just normal for anyone who, say, twists his ankle or burns her finger.  Does my eyesight fail because of MS, or because of age?  My eyesight is not as good when I am fatigued and the fatigue is part of my MS, but if I get enough rest (and don't rely on my readers, but exercise my eyes), my vision is still 20/20.

One suggestion I would make to anyone who has been diagnosed with MS, whether last week or last decade... get a cognitive evaluation done if you can.  I had one, and I have discovered that more and more doctors are suggesting it, more and more weight is put on it if you need to get on SSDI later, and even though I am on SSDI, I have a wonderful baseline cognitive report that helps me to understand and to explain to others why I am no longer as good at some things as I used to be.

So is it me, or my MS?  Is it you or your MS?  Your doctor may be able to point you in the right direction, but only you really have the answer.