living with lupus, day by day, moment by moment

Living with chronic illnesses means that my body is always in flux.  With the condition of my body never being constant, I am not on stable ground.  I always feel like I am walking on a tightrope, on a line that stretches long before me, with no end in sight.  

Walking on this tightrope, I am constantly striving for balance and am afraid of falling.  But factors small and big can affect my “stability”.  I can get sick, or fall ill, without warning and I rarely know what the causes are.  Did I turn my head the wrong way? Did I drink the water too fast? Did I not sleep enough? Or sleep too much? Did I not move enough? Or move too much? Did I eat too much? Or not eat enough? Is the medicine making me sick? Is the hair band too tight? Is it too hot? Are my clothes too tight? Did I wear my contacts too long?

These reasons seem both trivial and elusive. It’s always a guessing game, and since I don’t know what will endanger me and cause me to fall into a flare, I am always anxious.  I feel as though I am walking blindfolded.  My situation, that is to say my wellbeing, always seems so precarious. 

Unfortunately, without a cure, simply existing means I am never getting off my tightrope.  It is absolutely nerve wrecking and exhausting to try to maintain my balance all the time on this seemingly never ending rope. 

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