Post-Exertional Neuroimmune Exhaustion

THE REAL DANGERS OF "PUSHING THROUGH":

I overdid it majorly the last few days...  I tried to accomplish some adulting on days I knew I had already crashed and was needing recovery from active post-exertional neuroimmune exhaustion (PENE), active infections, premature menstruation.... but today's priority was important, so instead of listening to my screaming body, I medicated and caffinated through the pain and exhaustion to accomplish these important adult tasks.....  But by the time I crashed on top of a crash halfway through today (didn't have my pain meds with me), my disease had actually progressed to a new level of severity. 

Noise-cancelling headphones, dim/no light,
 neck support, heating pad, bed, and meds are all 
essential for me to show show any sign of improvement.

On the drive home today, the brimmed hat I was wearing in addition to the sunglasses AND closed eyelids was not able to block out enough of the light coming in the windows.  The faintest glow that still got through my closed lids was painful, making all my symptoms worse.  For the first time today, on top of my radiating and shooting and aching pains throughout my entire body, unimaginable exhaustion/fatigue, increasing nausea and disorientation... I needed to actually cover my face with multiple layers of Josh's shirt (he was driving) placed on top of my sunglasses AND my still-closed eyelids, reclined seat, neck support (Josh's shorts), and quiet car for a time in order to finally gain some relief. 

Many of the most severe M.E. patients are completely bedridden and feel this sensitive to light, sound, and touch every day of their life.... some of them "eating" through feeding tubes because digestion requires too much energy.  As I haven't eaten yet today for the exact same reason (the three french fries I tried gave me an awful gut ache and indigestion), and as I begin to rely on my service dog for mobility support at home now as well as in public (like to help me get from the bed to the bathroom today), I feel myself getting closer and closer to that severe existance every day.  I DESERVE AN ACCURATE DIAGNOSIS BEFORE I GET THAT BAD.  Other doctors are still just telling me to "go home and take better care of my health" and to "exercise as much as possible".  They don't understand the danger that is putting me in.  It's just not right.  Thank God I finally found someone who will listen. Actually looking forward to the testing that will likely be hell on Earth to live through.

xo  -R.