Arachnoiditis Survivor Portrait Project Recipient, Melanie Lamb, talks about living with Arachnoiditis

January 21, 2015 Posted by Melanie Lamb on Facebook K-9 Trainer and author of Standing With The Dog, speaks out.
Survivor Portrait In Progress for Melanie
Survivor Portrait In Progress for Melanie at SheilaLynnK Art Studio

“What happens when people with my conditions wake up…
We have to get a grip on our body and focus beyond what “focus” means to most.
It always begins in my feet. Burning and needles- intensifying with each passing nanosecond, until you feel as if your feet have been covered in lava. With me, then it begins in my back – until my whole torso is engulfed from the inside out- organs feels as if they should be melting. It then spreads to the rest of my body. Heart pounding so fast it hurts and feels as if my chest is going to explode. Very deep, fast and intense spasms filled with electricity surge through every fiber of my being. Then the sweating and tremors begins. It usually takes about an hour to recover, or it can set the stage for how our whole day will go.
What happens when we are abruptly or unexpectedly woken up – the same thing- only 1000 xs Worse.
We don’t sleep like “normal” people, so we take and cherish what rest we are able to achieve. We don’t reach that REM state of sleep because we are lucky if we reach 3 hours of sleep while sedated before our pain or sensations wake us. I really wish I had the ability to allow some to really FEEL what it’s like… over and over for just few minutes. And a few select others, I wish they could feel it as often as I do. Every single day. Yet, what most of us do IF asked the question, How do you feel? We smile and say “I’m okay” – because deep down, we know that typically when we are asked that, most times the ones asking… really don’t want hear exactly how or what we are feeling because they either simply can’t handle the description they will be given, or, they just really didn’t want to know to begin with, but asked anyway out of habit. Then there are those in our lives that see the pain through our smile or hear it in our words- and refuse to accept that “I’m okay” is the final response and will do anything to make your world a better place… we are NEVER okay. We condition ourselves to get by and make the best of what we have. Our “okay” level of pain lands most people in the ER.
Love my Tish ♡ Today, we both recover .She is never far away.”

Melanie’s Journey with Arachnoiditis and RSD/CRPS

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