sometimes i feel like my life is a living death... stuck between two worlds...the world of the living and the world of the extremely ill. i am grateful there are "good" days, i.e., when i can go out and be with friends or spend time with family, even take care of a grandchild. then there are the days of complete collapse, when i can't get out of bed, feel my bones are crushing one another, pain is everywhere yet nowhere, my brain is in a complete fog, my heart is pounding, and i am lonely.
on those days, i long to talk with someone who knows what it's like...who does more than try to understand...someone who gets it. i want an expert to tell me this is how this disease works...that others experience the same thing...that i will live thru it and, at some point, i will want to live thru it. i want to know that i have xmrv and within a year there will be a drug that will stop the collapse days. and i want to be held.
on the "good" days, i want to live as though i'm well...never having to answer the kind question, "how are you doing today?"...working on a project and seeing it to completion in one day...not having to balance every single activity against what it will cost me in the days ahead and determining if it's worth it...being able to follow-thru on a plan and show up where i'm expected.
because the truth is, though it isn't evident to those around me, even the "good" days are not limit-free. and that's my fault, because i want them to be, and too often act as though they are.
i know i'm never alone...for He is with me. i know i'm never out of God's care. but sometimes i need Him to show up in the flesh...in a person...to hold me, comfort me, encourage me, and give me rest. sometimes He does. sometimes i must simply believe He hears my lament.
it never fails...He never fails, at some point. to cause me to see the invisible...hear the inaudible...feel the inexplicable.
so i wait...holding on to the belief that my lament does not fade away into a void...but is heard.[/COLOR]
on those days, i long to talk with someone who knows what it's like...who does more than try to understand...someone who gets it. i want an expert to tell me this is how this disease works...that others experience the same thing...that i will live thru it and, at some point, i will want to live thru it. i want to know that i have xmrv and within a year there will be a drug that will stop the collapse days. and i want to be held.
on the "good" days, i want to live as though i'm well...never having to answer the kind question, "how are you doing today?"...working on a project and seeing it to completion in one day...not having to balance every single activity against what it will cost me in the days ahead and determining if it's worth it...being able to follow-thru on a plan and show up where i'm expected.
because the truth is, though it isn't evident to those around me, even the "good" days are not limit-free. and that's my fault, because i want them to be, and too often act as though they are.
i know i'm never alone...for He is with me. i know i'm never out of God's care. but sometimes i need Him to show up in the flesh...in a person...to hold me, comfort me, encourage me, and give me rest. sometimes He does. sometimes i must simply believe He hears my lament.
it never fails...He never fails, at some point. to cause me to see the invisible...hear the inaudible...feel the inexplicable.
so i wait...holding on to the belief that my lament does not fade away into a void...but is heard.[/COLOR]
