You don't UNDERSTAND ME!!11one!!1!

Lately I've had to cut back a lot. I'm taking three classes instead of my usual four, which was already less than most students' five, because I dropped my online class before it even began since I could tell I didn't have the energy to do well in it. I've been putting my dog on the treadmill instead of walking him twice a day because that got to the point where it was killing me. I've stopped leaving the house except for classes- I've been avoiding driving as much as possible because I'm just too tired. I've been letting my parents do errands for me a lot more than I was, and I'm having trouble mustering the energy to cook anything even vaguely complicated. I've also been very careful about socializing, limiting my already very unexciting social life to avoid wearing myself out too much to keep up in my classes. But I think the most frustrating thing about it is how the people in my life are reacting to the changes.

Mostly it's the people who keep wanting to see me that are doing it. And I appreciate it to a certain extent because it means that they really like me and care about me. But having to give that same excuse of "I'm too tired right now" is getting really old, and I'm sick of finding new ways to brush them off as they try to convince me to do it anyway.

It is definitely something I expected from one of my close friends from high school, as she's quite healthy and has never understood what it's like to be so exhausted that you can't just go do stuff anyway. We've had an understanding for a long time that she's just not ever going to get me. After all this time she has learned to be nice about it at least, and I managed to convince her that I feel way too crappy to do more than have dinner with her tomorrow. She wanted to go see a movie and then have dinner, not getting (until I explained) that even though I'm sitting down the whole time, movies are loud and I have to focus on them so they actually tire me out a lot.

It's also something I expected from my cousin, who keeps trying to get me to drive out to her house to visit. I would love to, but it's far away and involves highway driving, plus she has this habit of asking me at the last minute. Visiting with her is also tiring because we tend to talk a lot, she has two young kids and she always wants us to go somewhere and do something. All of that together is too much right now, to the point where I'm not sure I'd be able to safely drive home. And sleeping over would mean figuring out multiple meals and planning ahead a lot. Luckily for me she occasionally comes in my direction, so I get to see her, and she's very nice about it when I refuse her invitations.

This level of not really getting it was not something I expected from my mom, who knows all about the whole chronic illness thing as she has at least ten autoimmune diseases herself. But unlike me, my mom has a tendency to push her way through it all despite the consequences, doing as much as possible every day and just feeling completely awful all the time. I decided a couple of years ago, when I dropped a major in my last year of college and cut back on my courseload because my body simply couldn't handle it, that I'm not going to do that to myself. And since then we've had distinctly different strategies of survival- mine to take it slow, and hers to shove through and do it all anyway. So maybe I should have expected this after all.

Well, technically it started with my aunt. My mom and her two sisters are going to fly out to my cousin's baby shower, and two other cousins will be there also. So of course one of my aunts decided it would be really cool if I came on the trip too. Which, to be fair, is true- it would be awesome and I'd love to see these people. At first I was thinking it might be worth doing, and my mom started encouraging me by suggesting all these ways we could make it work- we'd get a hotel with a kitchen in the room, we could cook in there, she and I could stay back and rest part of the time, we could look up gluten-free restaurants, etc etc. But when I really thought about it I began to realize that this just didn't make sense. I would end up having to fly pots and pans and a toaster over there, it's in the middle of a quarter which means I would becoming back totally drained and have to get right back into classes, I would be entrusting my already fragile state to restaurants I've never tried before that could be dubious, I would have to drive my dog down to my grandparents' beforehand and then go pick him up as soon as I got back, then deal with behavior issues because the rules aren't as strict over there, plus the simple fact that I'm not even sure I would get much out of the trip because I'm so damn tired. It took me several tries to convince my mom that I really shouldn't go, which frustrated me because she of all people should realize that yes, I have serious limitations here. If I do anything outside of my careful regulated routine I end up feeling worse, and I prefer to be cautious. I used to push myself way farther than I could handle every day and it sucked.

To be fair, taking the occasional chance and just doing something anyway is rewarding sometimes. Like my trip to Minnesota to visit a college roommate. But that just about flattened me and I was feeling it for weeks, even though towards the end of that visit I was more careful. And that was during a break.

The other thing that frustrates me a bit is how when I try to talk to my mom about my concerns about my future career, she acts like I shouldn't be worrying about that because she thinks I'll be feeling better by then. The thing is, I'm really not sure where she's getting this idea. We've found the top dose of Xyrem that I can handle, and the right antidepressant to improve my mood and make the side effects go away. This is a vast improvement on how I've felt any time in the last ten years. And it really is a great achievement. It's taken over three years of adjustment to get here, and it was worth all the hassle. However, this is it. This is how I'm going to feel for the next good long while, you know? Barring some sudden breakthrough that cures Narcolepsy, where I'm at now is where I'll be. But my mom seems to have some kind of nebulous, imaginary future in her head in which I'm feeling way better and can actually hold down a job. Which I'm really not sure is totally in keeping with reality, to be honest. And the subject has a tendency to get suddenly changed when I'm trying to clarify the situation. But you know, if it was my daughter I'm not sure I would want to consider it either. So it's not like I blame her or anything. But it is hard when the only one who might get it, doesn't.