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Saturday, August 8, 2009

To Cane or Not to Cane?

So the decision to use a cane was one that I thought about for a while. After reading how some people with MS had actually fared better with it, I decided to try it. From what I had read, many people found they exerted less energy when they opted to use a cane than when they walked solo. I figured I can use all the energy I can get. So I purchased my pretty, green cane.

Now the stares and the judgements begin. Am I "milking it" or "looking for attention"? I can't be "that bad", right? My decision is a daily one, one that I typically make as I walk out the door. "How do I feel right now?" "Will I being doing something that will wear me out while I am gone?" "Have I already done too much and about to "hit a wall"?" "Will there be a lot of walking?" Or "will I be far from my car?" "How is my balance today?" "Or my weakness?" "My energy?" These all come into play.

Sometimes, I run out the door without my cane and as soon as I get out of the car and start walking, I regret my decision. "I should have brought it." Now, I begin the dance of "Don't fall. Don't fall." Place my hands out and try not to stumble. Pray I don't make a fool of myself. When I left, I thought I was doing well, but sometimes moving around the house doesn't effect me as much as walking from my car to the entrance at Walgreens.

Many times I get somewhere and realise, "Great! I don't need this today." So it sits in a corner or with my purse. That is when the real stares begin. "See! She doesn't need it." "It's just for attention." I find this more from men than women, but the judgements can come from anywhere. It can make me feel guilty for having a "good day/hour".

I saw Montel Williams on Oprah this week talking about his experience with MS. He said, "everyone's experience with MS is different. Some people have balance problems. I don't. But I experience more pain. Others don't. " This is the big mystery with MS. You never know how you will feel or how your body will react. And every person is different. Today I am trembling alot. I look like I'm going through some drug withdrawal. Tomorrow that may be gone and I may trip more. Yesterday, I experienced the worst pain I have ever felt with this. I told my sister, It was neck and neck with the intensity of my labor pains. That is saying something. I kept thinking, at least after labor, I have a baby!

So, I try and ignore what others are thinking. I try and make lite of it because I know the truth. They don't truly understand. I don't really need any attention. I don't even need sympathy. I would just like some compassion and to be given the benefit of the doubt. I am doing the best I "cane". So today..."To Cane or Not to Cane?" That is the daily question.

Friday, August 7, 2009

Insane in the Membrane...

Well good days and bad days, that's for sure. I need to figure out when a good balance will occur. The worst part for me is as soon as I say I am feeling better people start to assume that I won't ever feel bad again. And if I do have a bad day, I get the comment, "Well, I thought you were feeling better?" I was, but today I am not. It is frustrating to feel like I can't say I am good or bad without feeling guilty in some way.

I feel like I have to keep my feelings to myself, even with some of the people that are closest to me. It is very lonely feeling, like I have to suffer alone. I absolutely am able to put on a brave front and "fake it till I make it" facade. I am an expert, but sometimes I wish I could just vent without having to explain or justify "why". I don't always have an explanation. One day I may be stumbling or losing my balance more. The next I can be in horrible pain. And the next simply exhausted. I can't explain it, I'm just trying to get by and live my life the way it was dealt to me.

Even with MS, I love my life! I have a beautiful family, a nice home, a good job and food on my table. I couldn't ask for much more...maybe a little less debt, but I am working on that. I just feel like keeping in how I feel is counter-productive and can only drive me insane. Short trip ;)