Speak the truth, even if your voice shakes..

I'm going to talk about MS today... mostly because, well, I feel like I hardly ever talk about it. Maybe I do in a sort of cryptic sense, guarded, if you will.. but not today.. today I'm broken open for a bit... humpty dumpty, fallen off the wall and I've not been put back together again...

I'm not sure where to even start, how far back to go..

Despite the ups and down, I'm finding that the hardest part of dealing with MS for me is the guilt and the invisibility of the disease.  I expect things of myself, a certain way of life, a work ethic, an energy level.  Since I expect them, I imagine that others expect them of me too... someone once accused me of faking my disease and since that day, I think I've had a major issue with trying hard to prove that I am not a slacker, that I can do whatever anyone else can do... the thing is,  I can't do what everyone else can do and when I can't,  I feel guilty. I feel like I've let people down, like I'm undependable and unreliable...  so I push myself more, to try harder and then I end up where I am now... sick.  The fatigue is so bad that somedays I haven't been able to move enough to even feed myself... the frustration builds and becomes overwhelming because I want to just feel normal... I want the pain to subside and my mind to feel clear.   I wonder if anyone else out there with MS feels the same...

Often times I start to feel stuck.. like I have to work and push myself... I run myself ragged, because I feel like I have to do it in order to survive and have insurance and to pay my bills... in hindsight though, I think maybe it just makes me worse and I'm possibly making my future shorter by worrying so much about it now.   I feel like sometimes, when I dont feel well, people don't believe me, because they say "you look so great" and while I appreciate it,  I start to doubt myself... maybe I should feel well since people think I look well...  sometimes, on those real bad days,  I just wish I could look on the outside how I feel on the inside.

The other most trying part of having MS, as vein as this may sound, is believing in yourself enough to form relationships.  In a way I guess I sort of feel damaged.  I wonder if there is someone out there, whom I will be openly able to express how I'm feeling...  I feel like I would never want to be a burden on someone, never want someone to feel like they have to take care of me.  And at the same time, I wonder if anyone will ever want to be that person for me, or if it is too much to ask? Why would someone choose me, when they can choose a perfectly healthy person next door?

Ahhh.. anyhow... the ramblings of an open MS riddled mind... I guess sometimes it gives you a lot to think about... it's not always... it's just when times get tough, you start to wonder how to make it stop.