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Friday, May 23, 2014

I Just Need To Lie Down Constant Mantra

Amazing descriptions and explanations and/or theories have emerged onto the ME/CFS landscape in this last year.  I am mostly jumping for joy and feeling relief and hope but sometimes, i do admit, I sit in anger and resentment that it took this long.  But that will be my own journey to grieve and figure out.

The one description/reason for the 18 year old mantra playing constantly in my head has been explained and thus validated.  I called it fatigue, never feeling comfortable with describing it as a message or mantra for fear it would push my mental illness diagnosis even further into an even more severe diagnosis.

"I just need to lie down" is a message that the vagus nerve sends the brain when we have an infection, virus or even some parasites.  It says "Hey brain we got something serious going on down here so our girl is going to have to lie down and rest so we have time and extra available energy to send in the immune system to fight it off.

So all these years of questioning myself, "Maybe I am lazy", maybe I am just chronically depressed because I couldn't get two steps away from the mantra, now have been put to bed.

That is a sick behavior drivn by the brain and immune system to get optimal conditions for repair.  Did all that heeding to the message actually help me? I'm not sure.  I just know it feels good to have a solid phsysiological explanation for that key component of my illness - maybe the most disabling feature of all.

So now, until a treatment or cure is developed for my illness and can be honoring and thanking my severely and unexlainably compomised non HIV immune system for continuing to try to work.  I commit to it and my sister Sherone that I will be working to honor it and not giving up hope.

It is called "neuropathological sick behavior' caused by an acute or subacute infection of the brain, spinal column or vagus nerve. Here is a link to a more comprehensive description: 

And here's an 8 min video clip of an attempt to do a day but ended up lying down again: 



Peace be with you and all that jazz!

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