living with lupus, day by day, moment by moment

“How are you?”

It’s a harmless question, really, and the first thing people usually ask after saying hello.  Aside from the question of when my son will have a little sister or brother (more on that next time), I find this to be the hardest question to answer.  After living with lupus for 4 years, I still have not found an appropriate response to this very simple question.

The difficulty stems from the fact that when someone asks how you are doing, they generally expect the answer to be “I’m fine, and you?”  They want to move on and talk about things, other things, not about how you are REALLY doing.  People become very uncomfortable with responses, such as “I’m really sick.”   I have learned this the hard way.  In the early stages of my illness, I used to take the time to answer the question with how I was really doing.  How sick I was.  How difficult my days are.  How my life is changing because of the illness.  But I found that in most instances, I was wasting my breath.  Most people did not know how to respond to such stories.  They were uncomfortable.  They could not relate.  They could not comfort.  Silence usually followed.

So now I am wary.  I examine the person asking the question and decide whether or not I should answer with a simple “I’m doing ok” or ——–

“Well, so. .  . I wake up in the morning like I ran a marathon, drank lots of tequila and got run over by a truck.  My body aches, my head hurts, I’m dizzy, nauseous and have difficulty breathing.  i feel like vomiting.  And I’m also dead tired.   This happens every morning, like ground hog day.  No exceptions.  After some time, I manage to drag myself out.  I try to eat something so I can take my morning medications, there are lots and usually, I feel even more nauseous after taking them.  Because of my neuropathy, my tastebuds are shot and I cannot taste anything I eat.  I also have many GI issues so eating is never really fun.  While most people are well, and occasionally became sick.  My baseline is that I’m sick ALL THE TIME.  24/7.  And then, I’m frequently ill.  So I am usually balancing pain, fatigue and a rotary of illnesses all day.  The pain is widespread, from head to toe.  My body feels like it’s burning, like someone is punching me and as if there are a thousand needles poking me.  It aches.  The fatigue hits hard throughout the day and it feels like I have pulled a few straight all-nighters.  I feel like the walking dead.  Walking, ah, now that is a tough one.  My legs and feet are numb from the neuropathy and I feel pain with every step.  It’s like having a permanent shin splint and bunch of broken glass stuck to your feet.  Then there are rotary of illnesses.  I get dizzy and nauseous if I move just the wrong way.  Headaches come from nowhere.  I have difficulty breathing, as if gasping air from a straw.  I’m also sensitive to everything such as light, sound and temperature.  Because of the Raynaud’s, my hands and feet are always freezing. My eyes are always dry and my hair falls out a lot.  I deal with the side effects of my medicine, such as weight gain, bloatedness, upset stomach and a low immune system.  Many times, I have cuts and bruises that I do not know the cause of.  At night, even though I am exhausted, I cannot fall asleep because of all the pain.  When I do fall asleep, I suffer from unrestful sleep and night sweats.  This is just the physical stuff, let’s not even get into how this is all weighing on me mentally . . . .”

So if you are asking, really asking how I am, this is really how I am doing these days.

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