Monday, August 12, 2013

Lupus isn't a one size fits all

I think we all know this by now - lupus affects every person differently. The manifestations of your lupus will most likely vary from mine, and the degree and type of symptoms you experience on a daily basis might not resemble what I encounter at all. This is why it's so difficult to understand and diagnose the illness - because it looks different on everyone!

Because the disease varies so, the treatment and lifestyle alterations that work to combat the symptoms for one patient might not work for another. Of course, there are general therapies that tend to work, since symptoms like joint pain, fatigue, hair loss, and rashes are so common in lupus. But even those may range in severity, such that the result differs from person to person. In fact, I've discovered that even though something is a sure-fire solution for me, it might not work for someone else. That's why it's so important to track your own disease activity in a way that can help pinpoint what's working and what's not - be it medication, lifestyle factors, or environment. Self-awareness is the key to making sure you take the necessary steps toward staying well. Here's what I mean:

Nap: I went to visit a girlfriend of mine a few months back, who also has lupus. I made sure I worked in a nap the afternoon I was there, and since I was napping, she decided to give it a try herself. I slept for a whopping 2 3/4 hours, and she...didn't really nap. It just wasn't working for her. She was uncomfortable, couldn't sleep, and aggravated her back in the process of trying to rest. Clearly, taking time in the middle of the day to sleep isn't a good option for her. She knows her body best, and I'm sure she'll settle on another way to relax and recharge mid-day. Perhaps meditation, reading, or even yoga might fit the bill.

Vacation: Another girlfriend of mine was in the midst of a flare about a year ago. She had a week's vacation coming up with her extended family at the beach, and was debating about whether to attend or not. We spoke shortly before her trip, and I told her that for me, a trip to the beach - in the heat and sun, away from routine, without the help of a babysitter, and with family obligations to consider - would have been the perfect catalyst for disease activity  If it had been me, no way would I have gone. But, her instinct told her to go, and so she did. She told me later it was the best she'd felt all summer. Her husband was there to help with her kids, she had the distraction of new surroundings, and she wasn't stuck at home, thinking about how crummy she felt. I'm so glad she didn't heed my advice!

Working: A devoted reader recently wrote in about her approach to working full-time. She said she felt she could have written several chapters of my book...my story was her story to a "T"! She even chose to stop working at one point, also in an effort to curtail disease activity. The only difference was that once she left her full-time job, she saw less improvement in her emotional and physical wellness, not more. She wasn't as busy, so she felt she had more time to stew about lupus - the medications, the doctors, and the symptoms. She also really missed being surrounded by people, and felt isolated at home all day. Realizing she needed to tweak the changes she made to her lifestyle, she started looking for a low-stress, part-time job close to home. She found one, and within a few days, she noticed a real improvement.

There you go - different strokes for different folks. It can take some trial and error to figure out what helps and what hinders your disease activity. But if you listen to your body, and work on recognizing how you're feeling and why, you should be able to make decisions that are good for the health of the one who matters most -- YOU!

1 comment:

Jen Sharp Gorman said...

love you mama. thank you!!!! xoxo