At this point, I made a mistake. I opened my mouth. "Someday," I said, "I'm going to have my dream house, where everything is set up so that I can sit down to do the dishes or work at the stove."
"NO," Mom said. "Someday you will be better, and you won't need that stuff."
I've been at this chronic disease thing for five and a half years now. A drop in the bucket compared to some, and really just the start, since I will be dealing with this stuff in some form for the whole rest of my life. That's what chronic means. It's not going away.
In the really early days, I still believed that every new med was The One. The medication that was going to Fix me. The medication that would make me Healthy and Normal again. They've all had some effect. But none of them transported me back to the land of the healthy. I haven't had another near-death crisis, for which I am endlessly thankful, but I haven't had more than a scattered handful of truly good days since early 2007, either.
After a while, after some hits and misses, some brief bouts of improvement and really miserable side effects, you learn not to hope too hard. I mean, you always have to hope. If you can't hope at all you might as well lay down and die. (And perhaps consider getting a referral and some anti-depressants. No shame. An awful lot of us in the chronic community need that kind of help. Constant illness is depressing as fuck.) This next drug is based on a different treatment pathway. Maybe it will be the one that makes a difference. Someone I know tried this kind of alternative treatment, and they saw improvements in these areas. Maybe I'll try that too, when I scrape up the money. See? Hope.
But it's a cautious hope. A hope that doesn't put all it's eggs in one basket. A hope that never asks for too much. Not a normal life. Not to be able to work again, or go out with friends, to travel regularly, or to be able to do my own damn dishes all in one go without having to sit down and take a break for a while.
I know Mom was trying to be helpful. But by rejecting my reasonable hope-- a hope that someday I'd live in a house that worked around my needs, rather than me struggling to work with what's there-- she squashed me pretty flat. Her hope was too big, too militant, too unrealistic. She still hopes that someday the magic pill will come, and I'll be able to live just like everyone else. I've tried all but two medications currently on the market for my disease. I'd say there's a reasonable chance that I'll be trying one of those two before the year is out. The other one is strictly monitored by the FDA, because one of it's "side effects" is brain eating fungus. I don't think my magic pill is coming any time soon.
So I keep my hopes small. More days where I don't hurt too bad. Less time in the bathroom. More energy. The chance to push my life out past these four walls. I can't hope as big as my mother does for me. The fall would kill me just as surely as my disease would, if given the chance.