Ok, I have a bit of a control issue. Namely, I don't want someone to tell me I have to do something a certain way. Suggestions, ideas, feedback...all good. But an instruction? Not so much. So naturally, and especially when you consider my age and where I was in life (a teen in high school looking toward the college world of freedom), being told "you just can't do that" for health reasons didn't sit well.
But, being at least a tad older/wiser/less rebellious (you know, entering that terrifying phase where you realize the 'old people' who told you "that's how life is" when you were a kid weren't always wrong...), I have actually made some lifestyle changes to meet my medical needs. OMG it's crazy. Guess what I found out...by making some lifestyle adjustments, I didn't have to make as many life plan adjustments! It's so cool. There are some specific things I do as part of a routine or habit which I used to shrug off as superfluous and wasting time, but now I realize that they really only take a few minutes of my life, and allow me to continue with other things. For me, here are a few of the changes I've made.
Dealing with the sun: using sunscreen (including reapplying) and wearing brimmed hats. I used to avoid putting on sunscreen (you know the excuses...I'm only going to be outside a few minutes, I need a tan, it makes my hands slippery), and forget reapplying. But the sun is one of my biggest enemies, with the ability to throw me into a NASTY flare after 15-20 minutes (less if I'm already down a few pegs health-wise). Finding sunscreens that don't make you as slippery (I like Target's store brand "Sport Sunscreen Lotion" - VERY economical and less-greasy) helps, and honestly applying it doesn't take very long (despite my best avoidance efforts). And the maybe 2 minutes it takes to reapply after a couple hours isn't going to kill me. But, by taking the grand total of 10 minutes out of my day to apply before going out, and reapply 2-3 times over the course of a day lets me go anywhere! I CAN go to the beach! I CAN go to a theme park! I CAN do a volunteer day outside! I am in control. The same thing with wearing a brimmed hat. I didn't want to because come on, how dorky is that! But I found a nice straw cowboy hat that wasn't "old lady in the garden" dorky, and it keeps the sun off my face, neck, and shoulders. OMG what a win-win!
Dealing with the cold: putting on gloves EVERY TIME I go outside, wearing a hat, always having a scarf. The scarf thing wasn't a big deal. I like them, they're comfortable, easy to keep with you all day, and can actually work with a style. I also like gloves, but didn't like taking the time to put them on just to run to the car or something. However, the Raynaud's and Dysautonomia work together, which means my hands get extremely cold extremely fast...and cold means stiff...and cold and stiff means it'll take forever to warm and loosen up...and the warming up process hurts. So I'd avoid going outside. But if I put gloves on every time (something that now bothers other people who have to wait for me more than it bothers me to do it), I don't end up in pain, which means I can go out anytime anywhere. The hat thing, again, was a challenge. I look bad in hats to begin with, very few people on my college campus wore them at all, and they mess up your hair. But getting sick all the time (and I do have a medical explanation for why not wearing a hat can lead to a cold) and feeling achy weren't any better than mussed hair. So I found that some knit hats can be coerced into not looking ridiculous, and some hair styles are easier to fix.
Dealing with dry skin: finding the right lotion, applying lotion after a shower. Severe dry skin comes with Sjogren's (dry everything comes with Sjogren's). The kind that itches so bad you scratch until you break skin, dry skin flakes everywhere, and feels totally uncomfortable (literally being uncomfortable in your own skin sucks). Thick creams are a nightmare for me, and most cutesy lotions don't cut it...I could go through half a bottle at a shot reapplying because I'm still dry. But, I found this AWESOME lotion (which does also come in a cream for those who need it, and they make a companion cleanser) called CeraVe. Available in most drug stores, it's not the cheapest product, but works really well and a bottle lasts long enough to warrant the price. Most importantly, I finally began applying it after a shower instead of waiting until I was itching like crazy. Before, I just couldn't be bothered, I thought I'd be controlled by this need to apply lotion. Now, by applying it when I know I should, I DON'T wake up in the middle of the night itching, and I don't scratch until I break skin.
There's one more adjustment I've made, but I want to do a whole separate post about that. It'll be about certain kinds of exercise, and when you should take it easy as opposed to when you should push it a bit.
So the point of this ENTIRE shpiel is this. I felt that making lifestyle changes would be giving control over to my diseases. If I HAD to wear sunscreen, hats, gloves, and apply lotion on a schedule, didn't that mean I wasn't in control? But what I was missing, or maybe ignoring, was that not doing these things directly caused my lack of control. If I didn't go places I wanted (like the shore), suffered the pain in my hands from the cold (from not wearing gloves), or didn't sleep through the night from the dry skin discomfort...what was I controlling? Nothing. Certainly not my own life. I'm pretty sure there are some people who are going to read this (if anyone's reading besides Shawn and Bridget?) and say "oh that's just growing up from acting like a child". I kind of disagree. Yes, it's growing up, but it's more than just moving past a 'childish' stage. It's accepting that I have chronic conditions that I can't afford to ignore when they annoy me, and learning the TRUE meaning of 'an ounce of prevention is worth a pound of cure'. But the best part is I didn't have to give up my control (that's right, I'm happy I could stay a control freak;)). I can do what other people do, I just have to do it in my own way and follow the rules. It's like reading the driver's manual before taking the driving test...yes, you could try to drive without reading it, but it'll go SO much smoother if you just take the time to do it right. I love control!