Friday, May 27, 2011

Multiple Sclerosis is...

living a life you never intended.
a body that doesn't always do as you intend, and sometimes does the exact opposite.
fatigue. all. day. long. everyday.
trying out medications that cause flu-like symptoms. every week.
deciding those medications are not really worth it and seeking other help.
steroids, they really fuck with you.
forgetting: everything.
being impatient.
being pissed off that you are always impatient.
wishing people would educate themselves.
knowing you should educate yourself more.
putting the little girl in preschool, first two mornings per week then four or five.
letting the little boy watch tons and tons of t.v., just to get through the day.
bands of tightness around yours legs and midsection.
blind spots in your vision.
weakness and muscle loss.
a sensation that the bottom of your feet are burning. constantly.
loss of sensation.
loss of balance.
loss of coordination.
randomly sounding drunk due to slurred speech.
losing words.
cognitive problems.
 missing steps and kicking furniture because you've lost your feet, you really don't know where they will land.  stubbing every toe on your poor tired feet over and over again.
so damn scary.
saying no to wrestling with the little boy, again and again.
feeling so sad and regretful when he says, "you ALWAYS say that!".
help.  family and friends offering more than you imagined you needed.
saying yes to help, and more help.  to food, to childcare, to time, to a listening ear.
finally taking the walk.
calling a hotline, finally talking to someone else who knows exactly what you mean.
online support groups, for the the boy who needs so much support from others who are experiencing what he is and for the girl who needs support from those who are experiencing what she is.
reading and reading and reading.  reading about diet and research and the experience of others with MS.
lashing out because you are so hurt and angry.
realizing that one more baby, one you both so badly want is probably just another dream you will let go of.
letting go of many many dreams, ambitions and wants.
wondering what effect each decision however big or small will have.
planning for then rethinking family trips, the cost, the effort, the drive, the heat, comfort once you get there....
loads of vitamins.
dreading the implementation of diet changes: going gluten free, dairy free, caffeine free, sugar free. one step at a time.
taking everything one step at a time.
learning to say, I can't do anymore today, please take over.
trusting that your request will be heard with love and care and honored too.
learning to love what you've got.
finding joy in the little girl's new found joy in preschool.
forming new dreams - dreams that are easier to realize, more flexible and easier to let go of if need be.
sometimes saying yes to wrestling, even when your tired - because you've got the emotional energy to bring that joy to the little boy.
finally learning to put yourself first and take care of yourself, because you, in whatever form you come to the family are exactly what is needed to make it whole.
joining the gym, deciding to spend some of your precious energy on your poor tired body, finding so much joy in the work of it and feeling so satisfied by the results - finding you can actually rebuild some of that lost muscle!
enjoying life, every little moment and hour that feels normal.
enjoying every smile and laugh and hug and kiss and moment of connection, because in that we are normal.
letting others in, learning to be honest and say what is really alive in you.
in our life, but not the whole, just a piece.

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