Friday, December 12, 2008

Um, Say What?

This is my 20th post on this blog. It's funny to me since I have 665 on my other one.
So, do you ever sit down and start thinking about life and your MS comes to mind and even though you already knew it, it hits you again:

Wow, this IS for the rest of my life. Holy S*%t!

Maybe it's still the fact that all of this is still new to me and, honestly, it's made my life really crappy for the last eight months, but I honestly do have those times when that thought comes to my head.
For instance, my oldest monkey came up to me the other night and said "Remember when we made those plans to go to Disney World in a year? That's still happening right?"
Without thinking, I said "Sure honey, why wouldn't we be going? We already have reservations and things. Why would you think we wouldn't go?"
"Um, well, because of your MS."
And I sat there for a second and it hit me, oh yeah, I'll still have "my MS" in a year, right. Cause it's here forever. Right.

I guess I'm still getting used to all of this.

But there could be perks to going to Disney now.

I'll have my scooter and by then I plan on switching out those wimpy wheels and horn for something more, how shall we put this? Substandstial?

Yeah, like that but only four more of those.

And the horn we've already discussed.

Oh, there will be danger, my friend. In fact, Danger is my middle name. (Actually it's not but I was on a roll of coolness.)

On a serious note, I've made myself a goal. I'm calling it the:

"No Weather Permitting Will Be Said Goal"

I know that doesn't make sense but I can help you. During the winter months, whenever my mother is making any plans to come and visit us, at the end of every conversation she will say "Of course, you know, this is all Weather Permitting, right?"

I don't want to tell my kids "Yeah, we'll go to Disney, As Long As Mommy Feels Good. It's the same difference, to me atleast. Because, just like snow in the winter, we all know that we can go from feeling great to poo in 2.4 seconds.

So, I am keeping our plans. If I need to add a nanny, I can handle that. In fact, we might do that anyway. But my children will see enormous rodents next spring!

How do you all manage family vacations?


Kelley said...

Yeah, Tracy, it does suck the permanence of MS. :(

I went to New York City the day after my dx. It was our tenth wedding anniversary; we had planned this trip for awhile. We just decided to take things more slowly. We would do something in the morning, come back to the apt. where we were staying and rest for awhile, then venture out again.

Granted, we didn't have any munchkins to entertain, but the same principles apply. Be well rested BEFORE you go on the trip! Plan ahead; have everything ready to go in advance. Don't feel as if you have to do EVERYTHING while you're there.

My mom, who also has MS, goes with my brother and SIL and their 4 kids on vacation. She just paces herself.

Hope that helps!


Bald Ben said...

"feeling great to poo in 2.4 seconds" This is great....

It is the worst thing about this damn mess. My wife never knows who she is dealing with happy Bald Ben or beat to hell Bald Ben. For that matter I generally don't know who I am deal with.

I love Disney World. My Dad took us there a whole bunch when we were small, and I can't wait till I get the chance to take my boys. Yet I have no idea how I am going to do it.

Hell, I'm still trying to find the energy to take them to see Santa at the mall. Although that takes a whole other level of energy anyway. Have you been to the mall at Christmas? It is filled with some of the basest and most infuriating people in the world...but we'll talk about that later....

Anyway, I was thinking about having MS "for good" this morning on my drive in to work. It seems so insane that our bodies just let this happen. That it will produce pain, lethargy, etc for no reason. It would seem to be in the body’s best interest to correct the problem and keep moving. I mean there is Space Mountain to go on after all.

Sadly I don't have an answer for you. I've been hiding and only venturing out when I have to. Although it produces a really great mystique about you...
"I heard Bald Ben might come."
"No way, Bald Ben?"
"That's what I heard."
It's generally at this point that my wife tells me to hang up the phone. She knows I'm not going to that party.

Anyway, I think Kelly is right. Slow and Steady wins the race. The bright side is that now you can skip the lines and just get on the rides with out the wait.

karen wynder said...

I agree with Kelley. Pack a couple of days in advance. Make sure your house is clean before you leave so when you get back it doesn't make you more tired to look at the mess. Sleep (if you can with kids) before you leave. While you are on the trip schedule down time...your kids might want to keep going but if you can't take a break....they will be fine with a few intermissions. Plus, it sounds like they know and are understanding of the situation...they'll get it! ALSO, take advantage of every single sit down slow ride you can. And, have are making memories with your kids that someday your body might not allow you to enjoy anymore...hopefully that day is a long long long way off!

Tracys Ramblings said...

Kelley- Yes, to put it simply, it sucks.
We were thinking about taking a nanny along and maybe inviting my MIL, who is wonderful with the kids, and that way we would have full support.
Basically, I just don't want to stop living because of it.

Ben- I am in the same situation as you. I have not taken my kids to see Santa this year, and we go every year. I have not set foot in one mall, department store, or supercenter while shopping. I have done it all online for the first time.
And the reason I haven't gone to the mall or any of the other places, is because of the people that you talked about. They don't care about anyone's situation but their own.
It's funny because I used to love going to the mall and seeing Santa and the Christmas decor. But now, all I see is the people, looking all unhappy and ready to mow you down in a moments notice.
All in the name of the Christmas Spirit..blahhh

Karen- See, one of the reasons that we have reservations for a year from now is because it's at one of those resorts, the Animal Kingdom one, where we will basically have our own apartment. Two bedrooms, bunkbeds, small kitchen. And the resort has an animal reservation, I mean we can watch the giraffes graze from our balcony!! But the cool thing is, it has an awesome water park type pool, restaraunts, and a train that takes you to the different Disney parks. So, if there's a day where I can't handle a park, the hubs and kids can hang at the pool. It's just one of those places where you don't have to leave to have a good time.


Tracy, no matter what, I think that you'll have a great time with the family. Plan ahead, have back up plans, be willing as a family to separate (leaving you in the rooms while nanny or mil take over).

Definitely take your scooter no matter how great you had been feeling, you'll probably be glad that it's there. And you'll get to jump the lines (maybe).

Yes, MS is here for live, aargh. But you learn to deal with it over time. It does get easier.

Denver Refashionista said...

I can really relate to this. I'm still adjusting to all this. While I hold down a challenging full time job I sometimes really hesitate about committing to anything else. I am trying to get over this but some days are very unpredictable healthwise and I hate to flake out.

Weeble Girl said...

I just wanted to let you know that I find this blog and you're other one a total hoot. Your fun sense of humor shines through; makes me wish I could hang with you IRL but then you may ask me to babysit.

I only have me so that makes vacationing easy. I think you've received some great tips on here and taking a nanny may be a super idea.

I hope you have fun with Mickey and Minnie when the time comes.
Weeble Girl

Casey said...

I know how you feel. We have a trip planned next month and a trip to WDW next December. Both we are driving and we are still planning on going but I have no idea how I will make it in the car for that long. At least I can rent a scooter at WDW and on our other trip I am bringing my walker. We already got perks at WDW b/c one of my kids has special needs but I guess we get even more now. I hope you are having better days now.