Tuesday, December 22, 2009

Fear is a driving force

I heard really sad news today and it was a blow to the positive swing I have been on (don't worry I will not stay here long).

I had mentioned once before that my best friend's mom had MS.  Although she never had huge physical symptoms (gait issues, numbing, etc) she had noticed lately that she was definitely having cognitive issues (having issues speaking, remembering basic things).  Well today after an MRI, she received the diagnosis of beginning Alzheimer disease (basically the cause was MS).  In a year's time she has doubled the lesions on her brain and although she seems fine physically, she is now officially in a progressive form of the disease. I feel sad that I was not more caring and aware of this "hidden disease".  Now, after 14 years of friendship with her daughter, I am able to understand how scary this all is, but is it too late?  I cried talking to my BF as she deals with the fact that her mother may at some point forget who she is, who her granddaughter is, who SHE is.  What kind of life is that, not one that I want to sign up for.

MS is known as the "invisible" disease as it is not obvious by looking at someone that they have it.  Most people do not have clue how MS affects a person (me either, really).  Even newly diagnosed, I find myself stumbling to explain how I feel most times and it is easier to not mention when things pop up as to not come across as complaining (people tire of hearing all the things that are wrong with you-they have their own problems).  This is a tough place to be in; you don't feel well (tired, vertigo, numbing, pain shooting through the legs, cognitive issues, etc) and you don't want to be that person who is always whining.  I also tire of people thinking they know what is best for me - I have been exhausted for months and someone tells me I should get more sleep (cause that will fix EVERYTHING).

NO, I am the one dealing with this, do not tell me how to be!

Anyway, I just want to say that MS is scary and I fear what is to come (daily).  It is the force behind all the changes that I am making in my life, as I try to take control of something that is really uncontrollable (and that is scary in itself).  I know that life is unfair, I get that, I just don't always have to like it.

I leave you with a video for World MS Day (this year May 26) which made me cry.  This is now my life and sometimes that is hard to take.


KimZepp said...

Sorry to hear about your friend's mom.
Feel free to chat, complain, whine, whatever you like, to me anytime. Sometimes people just need to get it all out - and you're no exception.
The video was very touching. That song, Beautiful Day, has helped me finish many of my races. :)
Oh, by the way, I found out a few days ago that my neighbor has MS. I've lived here 2 years and spent lots of time with her, and never knew. Her son happened to mention something about it in passing the other day. Hmm.
take care

Julia said...

Thanks Kim, I might take you up on a listening ear sometimes. BTW, incidence of MS is a lot higher here in the Northeast - they think it has some correlation with Vitamin D from the sun. It seems like there are a lot of folks in this area, at least I am learning that.