Ive been working hard around the house, the usual tasks that need to be done around here. My days seem to start off with energy to spare and then the following day I push the boundaries of my endurance. I keep up a non-stop pace again and again and again, until I can’t realily decipher if I am truly fatigued or did I just not eat right the day before. I begin to feel very tired for a few days in a row and I begin to rationalize that perhaps the day before; I didn’t hydrate enough? Maybe my sleep was not thorough the night before? Maybe I worked out the gym too long? Maybe I ate too many carbs? Not enough protien? Need vitamins? More Cheetos? The weather? Until there are no more excuses….only my heard-headed habit of going, going, going until I collapse.
My husband, so caring, so patiently shakes his head. He doesnt know why I have a compulsion to do so much. He simply says “honey, Ive tried to have you slow down for years, but now, I just wait until you come to a painful rolling stop and cry from exhaustion, fever, sweats”.
But in reality, I just dont watch my fatigue level close enough. I push my body to the end limits and then here comes the crash, the exhaustion that leads to 18 hours of sleep and teeth chattering, fever, drenching sweats. I changed my nightshirt twice last night and had to sleep on a towel because my sheets were soaked as well as my pillow case. I have crossed over the line of simply needing to slow down for a few days to complete fatigue, exhaustion.
As the years go by, since my initial flares, I have thought and felt that I am truly fine. But then the “baby dragon”, thank goodness, not a “full grown dragon” creeps into my life to remind me and let me know, “you can always have another flare, maybe bigger, maybe more harsh, maybe permanent, maybe death”.
The peculiar aspect about this fatigue is the rubbery feeling legs. I dont think I have ever written about this before in all of these years writing this personal journal. But the last endurance drop I experienced, I had this feeling also. Maybe Im become more aware of the vague signals I get to stop doing so much.
So today, I rest, sleep, eat, hydrate very well, rest some more sleep and then I rise and shine and greet all of you with an energetic smile.
Stay healthy my friends,
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.