I'm back...

I wanted to share and discuss a recent post I made to my Facebook page. Here is the post:


"Posted by a fellow patient with MS on the NMSS site...I 


could not have said it better myself.


"for me, the most hopeless part of MS is the lack of


 explainability... I just don't "look sick enough" to 


explain why I can't do things.... and everything I do


manage to accomplish puts a false expectation that I 


could do more "if you just tried"....I am just tired of 


having to explain and make excuses for myself"."




People responded with very kind comments to my post 


but many missed the point. I am not sad about this


situation. I've had 12 years to process and come to 


terms with the fact that I have MS. 




People not "getting it" is less of an issue 


now that I'm in a wheelchair than it used to be. I had a


friend who used to basically sprint down


steps in front of me while I struggled down with my


balance and spasticity issues. This is not to say she


was a jerk. I think she was trying to demonstrate that


I could go a lot faster if I would "just try" but this is 


unfortunately not the way MS works. What my fellow 


patient wrote simply spoke to me on a deep level.




When I say I can't or don't want to do things it is not for


a lack of wanting to. Trust me, cabin fever has taken


hold. It could be because the place isn't accessible, or


maybe the bathroom isn't, or maybe the heat is too


much for me, or may be I am having bowel and/or


bladder issues. This makes it nearly impossible to plan


ahead. None of this is new for me. I just ask that


people consider these things before judging.