People have often asked me what MS is or what it's like. My daughter's Kindergarten teacher even did a mini presentation on MS to the class the other day after one or two kids giggled to my daughter about my cane and it hurt her feelings. The fact is that MS is one of those diagnosis where sometimes it is associated with an uncle in a wheelchair or a younger cousin who walks funny, maybe even a sister who is still running a 5K every year. MS is as unique to the individual that lives with it which explains why it can be a little mind boggling to not only inquiring people but the very people living with the MS!
Then come the questions that it took me years to answer myself. Why can I walk one day without a cane, the next I need a cane and the next I cannot walk at all and need a wheelchair. On really bad days I need an electric chair because my arms are too weak to propel myself in a manual wheelchair. Then, maybe I will wake up the next day and my symptoms are POOF! gone. That's right. "Asta la vista baby." In the words of my Governator Ahnold.
You know what? MS is confusing. And it is not something you can depend on either. Like when you want to make plans to volunteer to do the class basket for the Carnival Auction. I have been so excited to participate in something other than doing the Scholastic Book Orders from home. However, since I had a minor surgery to have my Port a Cath removed and been in a car accident and moved, wouldn't you know it that my energy stores are totally wiped out. (anyone familiar with chronic illness will know what I mean here) I am tired+exhausted+sick tired+weak+too tired to eat or pee tired
My 12 yr old came into my bedroom yesterday morning shouting in my ear, "I CAN'T believe you have that thing next to your EAR and you are still SLEEPING!!!" I barely managed to lift my hand to smack my Blackberry that was wedged under my cheek to shut the damn thing off. My Blackberry gets some good volume which is why I like it, it is better than an alarm clock but it has got nothin' on MS and me.
I am learning to take care of myself in Physical Therapy, I am so lucky to have the PT that I do, he is addressing all my many, many compounding issues. The one I am really appreciating tackling right now is energy conservation. So, I emailed the Room Parents and told them I was not up to doing the class basket and asked for help. It is a giant step for me in the right direction. Normally I would have just kept on and burnt myself out to the point that the basket, it would be awesome but I on the other hand would be in bed the entire day of the carnival. I am waahahaaay more important than a basket!