I'm probably more or less reiterating what everyone else has said, so I apologize if this is repetitive. I'm not okay with it. None of us really are. I know that we'd all love to have more days with less pain...ultimately pain-free days. As of right now, the only thing we really can do is "deal" with what we've got. We didn't ask for this disorder, but since we do have it, having the best outlook about it and managing it to the best of our abilities is what's ultimately happening. I'm not okay with the pain. I'm in college with a full schedule, all of my labs, homework (another issue for another day), and two campus jobs in the admissions office and in the English department. I also have nights where I have to pull legitimate all-nighters (on top of the lack of sleep I get from the RSD alone) so that I can pass my tests and not fall behind on classwork. I'm not anti-social, but I'm introverted and kind of keep things to myself. In a sense, it's a bad habit, but in another sense, it's my saving grace. I'm responsible for myself, so I don't have to worry about others keeping tabs on me (well...except for a professor who is concerned when I don't get enough sleep, whether it's from RSD or classwork). I constantly have to remind myself that I have 15 English 101 students who depend on me and don't care if I'm in pain or not, bosses who expect me to be at work, professors who expect us to be in class, etc. These all keep me going and result in my "optimism" and positive outlook throughout the day. I want to be able to have as normal of a life (if "normal" is possible haha), so I cope by internalizing and having the occasional night where I just cry. It might not be the best method, but it's gotten me through the 6.5 years I've had RSD.

Yep, as the others have already said, none of us are "ok" with this constant pain. We just each learn how to deal with it and how to keep going. I am currently seeing a counselor, which helps greatly to talk to someone other than my husband, family or friends. My husband is incredibly supportive, helpful and empathetic (I am very lucky in that respect), but he can only help me to a point.

I have been suffering with this for 21 years now. I was 25 when first diagnosed and now it has spread quite a bit. The good thing now vs. 21 years ago is that there is more information out there about it and there is support.

I am struggling with this myself, more lately since new spreads. But I find comfort in the fact that I am not alone in this journey and there is support here and at home for me.

All the best,
Nanc