Living Life With Lupus: One Day At a Time

Leslie Rott Health Guide
  • Have you ever woken up feeling hung over, but you didn't have a single drink? Woken up feeling nauseas, but you aren't pregnant? Ever been so fatigued that no matter how much sleep or coffee you get/have, you can barely lift your head off the pillow?

     

    These are just a few of the realities of my life with lupus.

     

    Compared to lupus, rheumatoid arthritis is predictable. While RA is characterized by pain and stiffness in the joints, lupus can't be so easily summarized.

     

    Medically, lupus is an autoimmune disease that impacts the major organ systems of the body. It is incurable and the drugs used to treat it weren't specifically created for lupus.

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    Personally, I never know how I'm going to feel on any given day, or even every hour. I can cycle through feeling fine and terrible multiple times a day.

     

    Having lupus means feeling like you have the flu ALL the time.

     

    As I have tried to explain it to people over the last few years, I often feel like I've been hit by a truck, like I've been plastered to a wall. I literally feel so bad, that I feel like I have to peel myself off the floor or the wall. I feel completely obliterated. And most often, I get that feeling the minute I wake up in the morning, before I am even out of bed.

     

    You start out trying to catch up the minute you wake up in the morning. Every event takes planning, you never manage to catch up, and you often can't possibly do everything that you want to.

     

    People say that when a tornado is coming, it sounds like a freight train. I think that same imagery is appropriate for how I feel when lupus is bearing down on me. It's like the Tasmanian Devil blew through. I'm caught totally unawares, and am left to pick up the pieces. My own mortality is a freight train coming at me full speed, and I am glued to the tracks.

     

    You can probably talk to 100 different people with lupus, and get 100 different lists of symptoms and complications.

     

    I'm not going to lie. Lupus SUCKS royally. So does RA. Together they can be one show-stopping team.

     

    At least my two main illnesses share the same awareness month, even though these two illnesses make me aware of their presence every single day. I can only hope that someday, sooner rather than later, there is a cure for these illnesses and others. No one should have to live a life full of pain and uncertainty indefinitely. I think that's the scariest part of having lupus and rheumatoid arthritis. They are with me, now, a part of my life forever. And some days, I just want to stay curled up in bed, but I know that on most days, not even that will make me feel better.

     

    And in honor of May being arthritis (and lupus) awareness month:

     

    Please visit our Arthritis Awareness area - we're adding new content several times each week. Don't forget to enter MyRACentral's weekly contests throughout the month of May! Follow MyRACentral on Facebook or Twitter to get regular updates of new content and contests!

     

    Leslie Rott is the author of the blog Getting Closer to Myself and the organizer of the patient-centered blog carnival Patients for a Moment.

Published On: May 09, 2011