The Waiting Game

When I first got diagnosed with MS 13 years ago, I remember meeting a woman who was in an electric wheelchair.  She told me something that was very hard for me to comprehend.   She said she did not need the wheelchair, but she used it because it allowed her to save some energy to do the things she really wanted to do, like cook dinner.

At the time, I thought it was the oddest choice.  I could not imagine making that choice because I had no comprehension of the kind of fatigue that MS could cause.  Now, I do.

I went to a mobility specialist at the MS clinic at OHSU where my doctor referred me because I told her I was using a walker at work sometimes because when I get too tired I cannot walk straight and my balance is off, so it leaves me bouncing from desk to wall, or whatever I can grab onto to steady myself.  I also thought it helped me with saving energy.  She thought that considering a motorized mode of transportation might be even better.

This made since to me because it could give me the ability to take my kids to the park, the mall, or the farmers market.  I though I could take it on vacations so I could do more, but mostly I thought it would be a cool little devise that I would not be ashamed of that could improve my quality of life.  I just want to be the Mom and person that I used to be.

When I went to see the mobility specialist, after evaluation of my walking and various other skills, she said her professional opinion was that I get a motorized wheel chair.  I was nothing less than shocked.

I am not a person who needs a wheelchair!  I am a marathon runner who is capable of doing anything, right?

What surprises me the most is that I still don’t think I’ve fully accepted limitations that have been put on me.  And they are definitely on me now.   So much so, that I feel I am not a good Mom anymore.  I come home form work at 3pm completely wasted, with no energy to do anything; even crawling up the stairs to my bedroom can seem impossible.

I am now at the point where I am thinking of getting a scooter.  NOT a wheelchair, but a transportable, lightweight, scooter. Cool, it will not be.  They don’t make them cool that the insurance will cover.  I need something stable so I don’t risk falling over.  Ridiculous, right?

I have spent so much time going back and fourth on this decision, and I feel as if I’m waiting for a path to open up; a path to an answer that will improve my current way of living.   I hope and pray that that path will be the insurance approving the stem-cell replacement therapy in Seattle.  That alone opens up a whole new level of fright, but I cannot think about that right now.  I can make no decisions right now.  Now it is just a waiting game.  Waiting for the answer from insurance.  Once I get that I will know how to move forward.

What I know for now is that I cannot dwell on this any longer today.   I am taking my own advice and letting today go, knowing tomorrow will be a brand new day with more hope and more energy.

Posted in: Happiness, Health, health and wellness, Multiple Sclerosis