I've been mulling over my current fate. There is so much here. I'm trying to make sense.
Let me take a look at two debilitating "unknown" illness that I've had. The first was in 2099. I was shoveling dirt and felt ill. I starting burning up with fever, my stomach muscles ached and burned, I started shaking heavily and I became very weak.
I went in the house and laid down. After resting for a couple hours, I went to get up. I could barely move. It took every ounce of energy I had to just talk or move into a sitting position. I took myself to the hospital. After being examined, no anomalies were found. I ended up staying the night at the hospital for more tests because I simply was unable to move my body. I was scared beyond belief.
The following day, the additional tests showed nothing. I was sent home.
Methinks the overall general thinking was that "it was all in my head."
Over the course of six weeks, my strength came back one very small ounce at a time, a little each day.
Hmmm. Never once did a doctor say, "Wow, we really need to figure this out." Never once did a concerned friend or family member say, "we need to get you to a specialist."
No. It was assumed that I was somehow making this up. And, you know, with hysteria if you ignore it, eventually the "attention seeking symptoms" will go away.
Well, I never made it up. The new tests results aren't in yet, but it is possible that the diagnosed Borrelia bacteria infection I have, causes a wide range of neurological symptoms. Borrelia produces a neurotoxin. It does not show up in normal lab tests.
I lay around for six weeks, scared beyond belief, wondering if I'd ever be able to walk and care for myself again....and people looked at me like I was fucking crazy. And no one gave a shit enough to help me seek answers. I felt fucked over...and I was so very, very weak...and I didn't want anyone to know how really bad off I felt or my thoughts were...because..if people know you have a soft spot, a weakness, they take advantage of that and hurt you more.
I felt so incredibly helpless. My body didn't work and I couldn't get anyone to help. I surely couldn't confide in anyone the depth of my fear and worry...no one was listening.
Part of my difficulty in having a physical illness is my inability to accurately describe my symptoms. Aspergers colors every facet of my life and hinders certain aspects. My ....challenged verbal center has trouble finding the appropriate words to describe...abstract symptoms. If I have a small cut, I can feel it and I can see it. I visually acknowledge that I need medical attention.
If the pain is internal....yikes....the challenge begins. If I can't see it, it doesn't exist or at least, it's very hard to describe.
I had ongoing gallbladder pain in 2009. Doctors would ask me to rate the pain on a scale of 1 to 10. I guessed. They would poke the sore abdominal area and ask if it hurts more. Stupid question. In my Aspie mind, logically it would hurt more. And I have this whole delayed reaction to most things, so maybe a few hours later, I'd realize it didn't hurt more when poked.
I went to the ER three or four times with serious pain until some bright bulb actually said to me, "You need to see a surgeon and have your gallbladder removed. This pain will not go completely away until you do."
See, no one in any of my previous visits had put it into words that I comprehended. And having never had gallbladder issues or known anyone personally with the same symptoms, I did not understand the severity of my symptoms.....talk about feeling helpless and stupid.
Pain and symptoms are just really tough for Aspies to convey. Think of how much that sucks....you feel terrible and you can't identify or find the words to express what's going on. Like standing on a street corner, bleeding and no one stops to help and you are blind and cannot see the wound, but you know you hurt.
Aspergers is all about pain management, feeling helpless and stupid and doing your best as you climb that slippery, mud-laden mountain that always starts when you walk out the front door.
God, if I could just find those damn red flags and recognize when to use them!
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