We returned from a week long trip to Disney with family and great friends. It was a wondeful time. The weather was beautiful, especially since we left our snow covered van in the airport parking garage and landed in 80 degree sunny Florida. This wasnt my families first trip to Disney so we knew what to expect but we were traveling with a group of 17 so it was a new experience. We did things we had never done before or even knew Disney had to offer. It was a great trip.
I have always been a go, go, go kind of girl but that wasn't so on this trip. It was our first big family trip since my diagnosis. We've been to parents at the beach but that is pure relaxation. I found myself needing to sit down more often and when I didn't, my body let me know. I kept smiling and pushed on so as not to let anyone (except my husband) know how I was feeling. I think my girlfriends may have had an idea on Monday when I actually asked my husband to come get my son so I could sit and relax in the Bibbity Bobbity Boutique. Thank God it takes 2 hours to complete a princess transformation.
If any of you have ever been to Disney World you know there is a plethora of wheelchairs and scooters. They are mostly used by adults. It is something I have become acutley aware of. I noticed them before because it slows the bus loading or the movement of a ride. This time I was aware of them for a different reason. On our last night there, we watched the Magic, the Memories and You on the castle followed by the Wishes fireworks display. One of my friends arranged for us all to participate in the Magic Kingdom Dessert party. This gave us upfront seats to the show. It was perfect. I have always loved fireworks and Disney puts on a grand show but I found myself in tears through the entire presentation. I was holding my 4 year old son and thinking that one day I may not be able to stand and enjoy the show, that I might be one of those people in a wheelchair or scooter holding up the bus. That scared my and I felt completely alone.
When the fireworks were through we all turned around for a group photo in front of the castle. I couldn't hide that I had been crying because I am not a pretty crier. So one of my friends admitted to having been "choked up a bit" at the fireworks too. Thanks for taking the spotlight off me, it means a lot.
Now we are home and the excitement is settling in our house. My body is not settling though. My symptoms are worse than they've been in months or ever really and I am having some new cognitive issues. There is laundry to do, floors to vaccum, meals to cook, and teams to lead but I haven't the energy to get myself out of bed in the morning. I've been told the best thing to do is rest and take it easy but I don't want to. It makes me like less of a person that MS already has. I realize that one day I will probably be a burden to my family so I don't want to be one now. It doesn't make me feel better to sit and watch life go on around me, it makes me angry and sad. I want it to go away and I want it to leave me alone. It's still embarressing to be sick when you don't look sick. It's embarressing to not be able to manage life the way I used to. It's even embarressing to write this in a blog. I don't want anyone to feel sorry for me.
So, I will fight back against this MS thing the best I can with a little help from my friends and family. I will go grocery shopping, make the beds and plan future trips to Disney. I just might schedule a few more breaks.
Like I said, I am a mom with MS but I am a woman with a great life!
Beautifully expressed, Mandy.....your determination is admirable and your "F-you MS" attitude is awesome!! <3. And if ever the day comes that a scooter is needed in Disney, I vow as your friend to get one for myself, glamorize and pimp out both of them, and then race you all over the park in them!
ReplyDeleteI was thinking wheelchair bling Niki, great minds think alike ;)
ReplyDeleteMandy, good friends will be with you through all the twists and turns of MS....good friends will stay with you even IF you are one day the beautiful, inspiring woman in the wheelchair....might show up with bling and a cocktail holder for the wheelchair but good friends will show up!!