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Thursday, April 5, 2012

MS.. you take a piece of me with you

As I sit here tonight and think about my day, the little I physically accomplished and how tremendously exhausted I feel, words to a song I liked by Paul Young in the 80's come to mind:
Every time you go away
You take a piece of me with you...
What exactly do I mean by that?  Well, I just mean that every time parts of my body go away because of the MS, it takes away something much bigger than just the sensation or movement or whatever part of me I lost.  I lost a piece of ME.. and I never know if I will get it back.  This is the biggest fear in having MS.  It's living with the constant thought of "what if how I feel today will be the way it will be for the rest of my life?"  And no matter how much anyone wants to console me (or any of us with MS), they truly cannot since it's impossible to predict the future in a disease that is completely unpredictable and is as individual as our fingerprints.

I suppose I am in a reflective sort of mood this evening where my mind goes in all directions and does not know where to stop for too long but I do know one thing, and this is that I am feeling a sort of longing for normalcy.  I'm not even completely sure what I mean by that statement either except that I'm tired of not being able to shave my legs each time I'm in the shower because I either can't bend enough or I'm afraid of falling, I'm so sick of not being able to go to the bathroom as most people do (and this will only get worse over time), I hate only being able to wear ugly shoes.. shit, OK I guess I'm feeling sorry for myself yet again and I do not like to feel this way.  I wasn't crying or feeling sad until I started writing but hey, that happens from time to time.
I'm actually getting used to having others drive me to my appointments, to the store or wherever I need to go and it's really not too big of a deal to me.. yet.  I have been unable to drive for a couple weeks and I know far too well that this could continue for months on end or longer, which I am not looking forward to, but it could happen.  My longest stretch was 11 months, which happened to me twice in my 20's, so it's not an impossible situation although that occurred when I lived at home with my parents and brother(s) which made it easier to get a ride when I needed to be somewhere.

I have regained my composure and am no longer feeling "oh, woe is me" anymore.. and thank goodness!  I highly dislike when I get that way.  Life just is what it is and it is what we make it.  I still prefer to be alone with my babies than in a relationship where I need to take his feelings into consideration at a time when my own needs are difficult to take care of as it is.  I find it extremely difficult to be selfish and find myself going all out to take care of my significant other, even if it means causing my MS to flare up in the process.  It is one of my best and absolute worst traits so I choose to put myself first and no longer worry about anyone ahead of myself or my little girls.  It's more than I can handle right now anyway.

Luckily, I have nothing coming up this week and only one appointment next week, which is my Tysabri infusion on Wednesday.  Yay!  This means I don't need to get dressed until next week.  I can wear one of my three robes each and every day until the middle of next week.. oh joy!  Putting on a bra takes so much out of me.  Seriously, it does.  And then next Friday, April 13th, it will be my 43rd birthday.  I can't believe I will be 43.  Ugh!  Where did all the time go and when will any of these years finally show up on my face?  Not that I want them to!  I rather enjoy looking younger than I am.

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