Life with Lupus

In the world of lupus, no day is like the rest, and the ordinary nuances become the extraordinary. The body while being under attack, screams for rest, yells with aching clarity each time we move either getting out of the bed in the morning, trying to play with our children, or even just sitting in a chair.  Pain is a reality for most in this enigma of a disease along with increased chances of stroke, heart disease, miscarriages, migraines, neuropathies, depression and the list goes on and on.  Moreover, I have had my share of time to openly grieve the loss of what could have been.  Always wondering what it would be like to not have debilitating fatigue, energy to keep up with my beautiful children, and not having to see the hurt in their eyes each time I say "Not today."  Of course, pain would be nonexistent except for the occasional cold, and viruses like the flu would not strike fear in my heart each year during the months of October through March knowing that with my immune system I could end up in the hospital in the blink of an eye.  People would not look at me funny when I tell them I have a disease called lupus, or think that I am just being lazy or stubborn.

Yes, I have had plenty of time to think in the days that my body, in lack of better terms, has let me down and raged with body aches, unexplained fevers, enlarged lymph glands, hair loss, joints jolted with pain, unbearable fatigue, and a soul that cries out for the mere thought of a reprieve.  My life is truly unique.  As someone else has so eloquently explained it, my spoons are limited.  I do not have an unlimited supply of energy to do all that I crave.  Each day is given differing amounts of spoons (energy); thereby making it nearly impossible to create a schedule to follow.

However, as bad as it may sound, the fact remains that I am still blessed beyond all measure and fiercely, devotedly, unabashedly living with lupus.  My focus has definitely changed over the last decade with this disease, and it has taken me on a path of love, understanding, acceptance and survival.  I have changed many things along this journey, but I have always tried to listen to and respect my body.  Respect comes in many forms either through sleep habits, exercise, and what I put into my body either food wise or medicinally.  Our bodies are under constant attack, and trying to act on the things that I can change has definitely helped over the years.

I wish and hope for everyone out there with any kind of debilitating disorder/disease or the caregivers that give their all each and everyday without the thanks they deserve may eventually come to grips with loss.  The loss of a life that had been dreamed of or expected until this disease unknowingly stripped it from you.   I hope your quality of life is improved and that focus is put back on what you can do as opposed to what you can't.  Life is what you make it.  Perceive the impossible then go get it!

All the best,
Katrin