Rolling Around

As we are halfway through CMT Awareness Month, I have been thinking about possible topics to write about and realized I haven't touched on a subject that has been part of my life for over a year or so...it may be because I am still in denial, skirting the issue, ignoring, or just not talking about it unless necessary. It's not as if I'm ashamed, but when I think about it, it's a bit of a different reality to accept.

What I am talking about is how much more dependent I have become on using a wheelchair. My ability to walk or stand has gotten so limited that I don't venture out anymore without it. Last year, I purchased a CR-V just so I could have the wheelchair in the trunk of my car at all times. It has become a constant support and major assistance for me whenever I go somewhere that requires any browsing, walking or standing for more than 10 minutes.

While I am more than happy to be pushed around and am very glad that I get to do more than I would if I was on my own two feet, at the same time, I have some strange feelings about it. I try not to focus on the negatives: how young I am, how much more I was able to do not even 5 years ago, how I will manage pushing a stroller on my wheelchair when the time comes, and whether my future/inexistent kid will be embarrassed that his/her mama is on a chair...I know these are silly thoughts but sometimes they do pop into my head. I guess accepting the chair as part of my reality is a bit bittersweet ... when I was younger, this is definitely not how I imagined my 31-year-old self.

I also get annoyed at times with random strangers, all too eager to stare at me to try to figure out what's wrong. I can see their eyes going from head to toe looking for the reason I am bound to my chair and then looking at me a bit perplexed when I stand up to take a picture. I wonder if I am the only young person they've ever seen in that condition.

My dad and John took turns pushing me around in Newport, RI

I am thankful to my husband and my parents for always being more than happy to push me around. No matter how many times we need to get in and out of the car, John calmly assembles and disassembles the chair for me - I could not have asked for a better guy. I am also very grateful for my faith because without it, I may feel that things were unfair and do the "poor me" routine.

I also realize that I am lucky not to need the chair permanently...that I DO get to get up when so many others cannot...I think the process of acceptance is a long one, it doesn't happen overnight. Some days I am perfectly fine and others I am more emotional about it...I guess I just better keep on rolling on and enjoying the opportunity to enjoy this world on two wheels and a cushy seat...

Sometimes You're Up and Sometimes You're Down....

This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.

Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.

Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?

And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.

But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.

Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.