Do You Rally Around RA?

Often, if I don’t feel good, I can lie down for about an hour and I start to feel better.

I call that rallying.

I can usually get up and do what I need to do. As an example, when I traveled to New York in May for a Pfizer meet-up, my photosensitivity was in high gear because of spending all day in a conference room with fluorescent lights.  By the end, I had a headache and was nauseous.

But I really wanted to go out for dinner with some of the bloggers I met.  So I went back to my hotel room, amped up the air conditioning, put a cold compress on my head, took some ibuprofen, shut the lights, and took a nap for an hour.

I was good to go for the rest of the night. And this strategy works a lot of the time, even if this happens in the course of getting through a regular day, not just some special circumstance.

But sometimes, this strategy doesn’t work.

In those cases, I’ll go back to bed once, then go back to bed again, and then I will probably end up staying in bed all day, if I can’t shake off feeling bad. I don’t like doing that, but sometimes, no matter how hard I try, I just can’t rally. I think it’s important to know your limits and to listen to your body.

I also think it’s good to power through if you can, but allow yourself to be open to the possibility that you might not be able to power through, and that you might need to cancel or reschedule commitments.

The reality is that there has to be a balance.  I’m learning that I can’t do everything, and that I need to pick my activities based on how I feel and my energy levels.  Obviously, this changes day-to-day, even hour-by-hour.

So when I feel good, I try to take advantage of that, but I also try and remain realistic, and not overdo it.  When I don’t, I do my best to rally, but I don’t beat myself up if I can’t.  There’s nothing worse than trying to rally, starting to feel bad again, and not be in the position, place, or situation where I can rest or lie down.

When I first got sick, I didn’t really have any sense of balance.  But the longer I am sick, the better I get at knowing my body and understanding the fine line I walk between productivity and overdoing it.

Of course, I still make mistakes in this regard, but I’ve learned that if I give my body some time, it usually comes around.  And when it doesn’t, well then I have to be adaptable.

So how do you rally around RA?  What tactics do you use to take advantage of the good days and not beat yourself up about the bad ones?

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