I try not to dwell too much on my “old” life, the part of my journey where everything was simple. It took me a few months to come to terms with reality that it wasn’t just dream, I really was sick and bad things were happening. On top of the drama involving everyone else, there was an internal struggle. I was constantly on the go then suddenly my life dropped to nothing. I was warned about working out, being around any sort of crowd and potentially jeopardizing my health. It was like crashing a race car into a wall, the shift of momentum was brutal. I wasn’t gradually adjusting to a new routine, it was forced on me. That was one aspect of becoming rare that no one could warn me about.
Besides giving up shorts and tank tops thanks to bruises, I eliminated a lot of excess from my life. My energy was gone, I no longer felt like I was able to bounce around. Hanging out with friends? Not going to happen! Walking around the mall? I can’t be around crowds so Amazon is my new best friend. My hair learned to dry and style itself (you can tell that’s a joke) and I started living without makeup. I had to prioritize daily activities, none of my doctors could warn me about this adjustment. So here is my advice:
Do what you can, don’t feel guilty about what you can’t.
A lot of people think saying no means you’re a bad person. I’m here to say that is entirely untrue. Anyone who made me feel less because I said no was cut off. Why? Because I already felt bad enough, I didn’t need anyone else making me feel worse. In terms of physical appearance, I had terrible acne for a while. Sometimes people made comments, I just shut them down from talking any further by saying it was a temporary flair up thanks to prednisone. Now those same people gawk at how clear my skin is (because I’m off the devil’s tic tacs).
Same thing with my weight, when I got sick I was 125 lbs. I was a size 4 and everything was peachy. I’ve held on to 20 lbs or so and it is all around my mid section. Some people comment that they want a bigger butt, others take the opposite route and make comments about how big I am. I revert to the same thing each time, prednisone sucks and it is going to take a while for my body to go back to how it was before I became sick. I’m warning you, DO NOT GO SHOPPING! It can be depressing, so if you buy clothes make sure they will still look good when you lose the weight. Granted, if you put on more than 20 lbs, this might not be possible. I try to avoid shopping as much as I can, so I have to say no when I’m invited by friends. I just don’t need the mental aguish of trying to fit into a pair of jeans right now.
It is okay to be different.
You hear a lot about differences and acceptance as a child, but once you become an adult that stuff goes out the window! Try not to let ignorance bother you.. My skin is very thick since being diagnosed but I really had no choice. Keep people in your life who life you up and continue to push forward!