What a vacation!

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!
 

Where do I begin...

My big plan last night was to get my kids off to school with out my husband's help.  You see, I used to do that all the time.  Oh yes, I was up at 5:50 every morning walking 4 miles with my next door neighbor.  I did this through pregnancies, newborns, sleepless nights with sick kids, you name it, I didn't miss that walk.  Fast forward 7 years, it is 6:30 am, the alarm is sounding and I am willing my leg to get out of bed.  It refused! 

My husband turns the corner with hot coffee, my best friend.  Do I thank him ,of course not.  I complain that the coffee is too cold, it's already too late in the morning for me to do the kids alone.  Really what I am saying is, "I want my walks back." And that's ok, I will get them. 

Now I sound like a cranky person who has not adjusted to this life with my new friend MS, but really I am.  I am my son's football team mom (0ne of my favorite things), I coach a Destination Imagination team, I am on the cub scout planning committee, I am on the PTA, I excercise everyday (just not at 5:50 in the morning), I am my grandmother's caregiver, I hang out with great friends (a lot), we vacation, we take our kids to Disney, I clean my own home, pack lunches for my kids, make dinner for my family (sometimes, I hate to cook), I work part time (for a dear friend that made our holiday last year by giving me said job), the list goes on.  It may sound like I am bragging but I'm not.  Im just reminding myself all that I can do and enjoy doing. 

When I was first diagnosed, my husband and I sighed with relief.  No more wondering.  My neuro said that I recieved this news better than any of his other patients.  After the first week, i am certain I lost that title.  Steroids, DMD's, steroids, sleepless nights and a 7 day hospital stay cracked my spirit.  BUT, after 18 months of tears and good days and tears, here I am.  I am 16 months on Rebif, it is working for me and I am full speed ahead ready for what life throws at me (most days). Happy and grateful for all I have.  I hope I can meet other MSers or caregivers this way.  My husband also told me to do this.  So, here goes nothing.

I am a mom who has MS, but I am a woman who has a life and a great one at that.....