Today I am writing in orange. Figured I might as well add some energy into my words considering there is none in my body. To move out of bed this morning was such an ordeal. Half way through it I just stopped and began sobbing. No one understands. No one is in this body. Lupus is a mystery. I am happy in many ways. Happy my illness is not something that others can really understand such as cancer. Cancer they know about. Cancer they know has a beginning and an end. Lupus is a mystery to most. I can quote the text book description of Lupus......Its a unique, complex disease with a wide scope of symptoms. It is also an elusive condition in that affects individuals differently and often does not follow a predictable course. All I know is that today I am more than tired. I am more than worn down. Its a paralyzing fatigue. Why am I feeling like this today? Well lets see? I had company yesterday. I made a pot of coffee for my aunt and uncle. Then they left and Gary and I made dinner. Yup, normal, easy things that others do and take for granted are torture for me. These things bring on a Lupus Flare which could last days or even weeks. That's where my wish comes into play. I want others to understand that I cannot get a grip on how to deal with this illness. I never know what is going to make My Lupus Flare Up.
The lighthouse! Today my picture is the lighthouse. Its all alone there. Today I feel all alone!
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2 comments:
(((((HUGS)))))
Even in your loneliness...you shine brightly like a lighthouse. Keep shining, Lu, it will attract the people who love to live in the light...and thus, love you with no strings attached.
Oh dear one you are not there alone, I am there in spirit. One of my down days to and all my family have gone on their merry way to do their thing. So its just lay in bed, get up for five or ten minutes and back to bed. Have to do this all the time. If it were not for the Lord being here and my lupus friends on the puter, I know I would loose my mind. Body about gone anyway. At least I have a window I can look out of and see the beauty the Lord has granted this day. Snuggle in till its over and then try again.
love you
Willow
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