The other day I was watching Kris Carr's documentary Crazy, Sexy, Cancer. In it, there is one line in particular that speaks to me. She says that when it comes to illness, "You have a full-time job. You're always at the office of healing." She's exactly right.
I've mentioned before that there is not one minute of one day that I do not think about being sick. I can't help it. There are injections to be made, medicines to be taken. Blood work ups, tests, medicine adjustments, new symptoms, doctor appointments, insurance issues. I talk about it. I read about it. I research. I ask questions. I take note of every little change in how I'm feeling. It's exhausting, and it takes a lot of time and energy. Time and energy that, quite frankly, I don't have.
If you look at my computer you will find an obscene amount of articles on MS, links to diets meant to cure MS, videos on MS, articles and quotes to blow sunshine up my ass and make me feel that if I truly wanted and worked hard enough, I'd beat this. Best I can tell, the best thing for me to do is run around a lot and then go in the backyard and eat grass. And yet, despite all that, I'm still sick. What's up with that?
I often wonder if there's something I'm doing or not doing that could change my situation. And then I question whether or not I really have any control over this anyway. So I'll keep searching. Maybe one day I'll find an answer.
Wednesday, August 6, 2014
Sunday, June 29, 2014
Ah, summer. A time to bask in the sun, sit by the side of the pool, get outside to play and run around. Well, in theory that sounds about right. But unfortunately, for those of us with MS, the reaction is more like, "Ugh, Summer." You see, MS and heat are not simpatico, even though Vitamin D has proven to be beneficial. See the quandary? Heat tends to temporarily worsen symptoms--whatever they may be. For me, that means bone-crushing fatigue and the entire right side of my face going numb. It's kind of a built in alarm symptom: Warning heat alert! So, no, summer is not one of my favorite times.
Because I can not hide in my house and grow even paler than I already am, I have tried to find ways to counter my heat intolerance. But, unfortunately, the options for keeping cool are not cheap, not stylish, and not comfortable.
What are my options? Well, the easiest is probably the cooling bandana. Yes, I said bandana. As in the thing cowboys wear around their necks. It's bad enough I have this damn disease. I don't want to look like I'm wearing an ascot borrowed from Freddy Jones to combat it. No thanks, I think I'll keep looking.
|Yo, Adrienne. How do I look?!|
What about cooling towels? I recently bought one and it works well. The only problem is, I still can't quite figure out how to wear it without looking like Rocky Balboa. You know, when he had the towel wrapped around his neck. Now, go ahead and imagine my children's horror when I walk into the pool looking like this:
The priciest of the cooling options that I have found is the cooling vest. It is exactly what the name implies. It is a vest that you wear under your clothes to keep your body temperature down. You fill the compartments with ice packs. You know, kind of an MS bulletproof vest. Of course, I could choose to wear it on the outside of my shirt, leaving me to look somewhat like this guy. Pretty badass, huh? Except I'm a girl, and I would definitely wear a shirt underneath and wash my hair. Well, you get the picture.
Of course, there are easy things I can do to keep cool. But even those are not always all that easy. For instance, I drink plenty of water to make sure I stay hydrated. But that's not always easy, either, considering that my kids continually ask for a drink of said water. Or, a lot of times I'll bring a misting fan with me. For the most part, these fans do a good job--except for the fact that mine are usually out of water or broken. Apparently misting fans are simply a code name to my kids for water guns, and they also have some unwritten requirement that one must grab the fan while it's spinning to make sure that it can stop and then spin again. News flash, kids. They won't keep spinning if you keep sticking your fingers in them Sigh.
So, while I guess there are a lot of options to help me beat the heat, I still haven't found the one that's right for me. Until I do, you can find me at home. I'll be the translucent creature in the corner.
Saturday, March 1, 2014
Sometimes you have to trickle down through a whole lot of messy to make it to brave. And sometimes that's a very slow and scary process--not knowing where the messy's going or how it's going to play out. Sometimes it seems like it would be a whole lot easier if it was the other way around; starting off brave enough to deal with the things that follow. But life isn't like that. So, I guess all you can do is wait for the brave.