living with lupus, day by day, moment by moment

We all have our idiosyncrasies, and over time, we have found ways around it to make us appear more “normal” to others.  When you have a chronic illness (or two), you start to collect a number of mannerisms that might seem idiosyncratic to others.  These “odd” behaviors, however, are really coping mechanisms to help us live with our multitude of symptoms without having to constantly explain our illnesses.

For example, I have difficulty walking due to a number of reasons such as neuropathy causing numbness and prickling in my feet, lupus causing extreme fatigue, fibromyalgia causing widespread muscle pain, steroid induced muscle weakness, difficulty breathing, dizziness and nausea.  When I was able to move on from the bed, to a scooter, to a wheelchair and then to a walker, I tried to walk without aid.  This meant that I held onto my husband for support.  Or I would rest frequently.  I would use traffic lights as an excuse to take a breather.  I would also sit whenever I can. I also ride a lot of cabs or buses, even if it’s a short distance.  I usually avoid subways because the stairs and crowds are too much. The best was when I was able to use my son’s stroller as a walker!  But these are hidden things I do to cope with my difficulty with walking.  Some might seem odd to others.  Like why do I always take cabs? Why do I like to sit all the time? 

I have difficulty standing for a prolonged periods of time.  Sometimes this is more difficult than walking because in addition to all of the above, I also tend to have difficulty with my balance.  Hence, I still need a bench when I shower.  I need handle bars.  I still need help.  This means sleepovers are impossible.  Usually, family members have a hard time with this one.

Other things seem even more abnormal:

  • I need to always be in front or on the left of the person I’m talking to.  Because of my neuropathy, I can only turn my head to the right.  If I turn my head to the left, I immediately get naseaous and dizzy. 
  • I sweat easily (because of my thyroid issues) but my hands and feet are always cold (because of my Raynauds) 
  • I cannot eat a lot but I look 5 months pregnant because of my GI issues
  • I avoid alcohol because of my lupus, meds and GI issues
  • I cannot lie flat because of my neuropathy, I get very dizzy
  • I cannot wear heels because of my neuropathy
  • Som parts of me are numb (because of neuropathy) while other parts are so sensitive (because of fibromyalgia) that I yelp when I’m touched 
  • I’m extremely sensitive to smell, sound and light
  • I always walk on the side of the street that has shade since sunlight causes lupus flares
  • I chew weird because my mouth is usually covered in sores 

A lot of our behaviors, protective mechanisms to help us cope, seem even more odd because we don’t look sick.  We don’t look as though we suffer and need these additional aides, accommodation if you will.  But we do.  Sometimes when I’m caught without a seat on the bus and am hesitant to ask someone for a seat, I cry inside.  I have learned, however, to just try to wait it out or simply get off and try to wait for a less crowded bus or to hail a cab.

What are some of your needs, and how have you learned to cope with them?

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