Lupieliving

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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