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Monday, April 23, 2012

Out of Sight, Out of Mind...Really?

Juggling... Juggling. That's what I've been doing lately. Juggling my life and my commitments. I'm actually not too bad at it. So far the stress hasn't kicked in. That is a miracle within itself. Typically, I have taken on too much and then I crumble because of my health. I can feel my health and my MS threatening me with little warnings, like a trip here and some clumsiness there. I stutter or slur or the fatigue seems to creep out. MS likes to make sure I don't forget about it.

That is an interesting comment. Can I forget I have MS? Some people with MS would scream "No!". I tend to agree. I don't believe I ever forget that I have MS & that doesn't mean that I dwell on it either. There is just always some reminder, some invisible clue that tells you it's still lingering, waiting & don't you forget it. There are times that I do forget though.

My forgetfulness has nothing to do with forgetting my diagnosis or what MS is & the accommodations I make for myself and others. What I do forget is some of my symptoms. There are some symptoms that are always with me, and by that I mean when they come out it isn't a surprise. I expect the fatigue, the blurry vision, even the double vision. The pain is never far from my mind. It comes and goes, and some days are worse than others. No one really knows why the symptoms ebb and flow like a sort of internal tide, but they do.

When I "forget I have MS", it's the "other symptoms" that are forgotten. The ones that come from time to time, but don't stay around long enough to establish any real pattern or expectation. I have been noticing these little gems popping up again. The tremors in my hands, the fatigue so overwhelming that you wonder if you can make it to your bed. The weakness of my legs when they become so heavy they feel like someone tied weights around my calves. They wobble and feel weak, like they can buckle if I stand too long. When my legs react like that, they are more prone to jerks and jumps. My favorite one (read with sarcasm) is when I can see my legs are moving to walk, but I cannot feel them because they are numb. It feels as if I am floating above my body. That one and the electric current, Lhermitte's Sign, are in a tie for the strangest MS side effects for me.

I also forget about when I have trouble swallowing too. You would think this would be the one I pay the most attention too. I don't want to be the one who chokes to death because I wanted to eat a jelly bean. There are typical suspects in the food world that make this worse & I know this. The problem with that is I remember as I am attempting to swallow. Mid-swallow, my throat catches & it makes me stop. The candy family like jelly beans or chewy lemon heads, those with the gummy, sticky consistency are not my friend. Nor is bread sometimes. Anything dry, that needs that extra push to break down as you chew then swallow can lead me to it's trap; bread. toast, dry meat and the aforementioned candy.

The forgetting part is when it happens & I think "I forgot about that one". When my legs take on a symptom and I stumble. the familiarity of the symptom is there, but since enough time has passed in between, I forget that there are more then the daily routine I have come to accept. When they come back I remember. I remember how it felt the last time. I remember how it scared me. I remember when I last felt it or the first time I did. I am fearful that it will lead me to a flare this time or that I could end up in the hospital. This is how a flare starts. Then I have to remind myself not to panic because the future is unknown.

It amazes me the things we learn to live with and accept as part of our lives. People do it every day. They accept their circumstances, good & bad. The wife who stays in an abusive relationship, the friend who accepts her role as the shoulder to cry on, but secretly wants her own turn, the mom who knows she will be picking up after her kids because they "forgot", again. People accept other health problems too. The person who has to avoid eating peanuts, the diabetic who knows when to check their sugar, the MS patient who takes her shots to slow the progression of MS every other day and "fingers crossed" hopes it is true.

We accept so much and become so driven by routine and fail to remember we can make choices to change the bad and the good. We can be dutiful, we can be responsible, we can be doormats & we can take more than we deserve. But we can stand up for ourselves. We can ask for help. We can be surprised, good and bad. Life is an unscripted, an unexpected journey. We never know what our day may bring, but every moment we have is a moment we can choose our next move. Sometimes life is impatient & shoves you in the direction it wants you to head.

I know I have MS. I forget that it can be sneaky and try to take over. It also serves as a reminder to me for so many things. MS reminds me to slow down. MS reminds me to expect the unexpected. MS reminds me to have a Plan A, Plan B & Plan C. I live my life with a smile on my face and laughter in my heart. I won't allow MS to steal any more than it needs from me. I live my life on my own terms, by planning for the worst & hoping for the best. I may have to juggle a lot between being a wife & a mother, but I can't forget that my health comes with many twists & turns that can cause me to drop a ball or two. Honestly, there are times it is a blessing to be pushed in the direction to take better care of "me". So these symptoms may be out of sight most of the time, but my body reminds me they aren't out of my mind completely.

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