Sleeping 14 to 16 hours makes it hard to have a life

I have been feeling very tired lately. Is it due to the weather change? Diet change, stress? Who knows. I had my labs done and everything seems fine. But as always, if I over do my activity or if the weather changes and I exert myself harder than usual, my fatigue is so tremendous that I require a ridiculous amount of sleep.

I feel as I can fall asleep anywhere. If I just push myself to get the necessary tasks done, grocery shopping, cleaning up the house, feeding pets, making dinner, I become very cold and my teeth will chatter and I must sleep.

This weekend I slept 14 hours and then was awake for 3 hours then slept andother 2 hours. I felt fine after this long sleep. My husband is very supportive of me. He can tell when my immune system is causing some havoc. Stills disease is so uncommon and rare that very little is actually known, and it often goes misdiagnosed. Many people suffer for months in and out of hospitals and ICU and then even then a diagnosis isn’t found, as in my case. Depending on the organ affected, AOSD can take a life.

With this summer weather coming on, please be mindful of your energy expenditure  friends. Although you may not be in 110 heat as in arizona, you will need to pay attention to the humidity that can drain you.


Stay well my friends, minimize your activity in this difficult weather.


Daily Update

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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.

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