Share your Story: Jamison Hill

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Name: Jamison Hill

Location: California

image“The room is completely dark, even after I take off the washcloth and tanning goggles shielding my eyes from encroaching light. When Ryan and Nicole interviewed me for Forgotten Plague the body I worked so hard to obtain was wasting away, but little did I know how bad it would get. Gone now are the muscles I spent thousands of hours accumulating and sculpting. When Ryan asked me about my regression from fitness trainer and bodybuilder I lived in a 300 sq. ft. studio by the beach, now I’m confined to a mattress in mountain town in rural California.
 
 
It’s afternoon, about two o’clock, and I just woke up for the second time today. The first time was at six so I could be hooked up to a saline and vitamin IV.
 
 
This seemingly rudimentary IV cocktail has proved to be quite advanced and effective for my recovery. It’s almost hard to believe. In fact, for some it is hard to believe. Recently a family member, a physician’s assistant educated at Stanford, told me I didn’t need saline and that the benefit is all in my head. “Just drink water,” she said.
 
 
I sent her this bit of research from Erica Verillo’s Chronic Fatigue Syndrome: A Treatment Guide.
 
 
“In  the November 1, 2006 issue of the Lyndonville News, Dr. Bell unequivocally states that IV saline is ‘the most effective treatment for severe ME/CFS that I have found in my 21 years of looking.’ To be most effective, a liter of saline should be administered over the course of an hour or two.”
 
 
But this isn’t the only ignorance about my situation. A doctor recently asked my mom what I do in bed all day. “Does he watch TV,” he asked.
 
 
 
jamison
I thought to myself, “Yeah Doc, it’s a blast, I watch Family Guy and Seinfeld reruns all day. No, come on man, I live in a dark cave. Caves don’t have TVs.
 
 
This same doctor prescribed my saline infusions. And as I understand it, through my haphazard research, for me saline is about fluid retention and flushing toxins from my kidneys. And drinking water doesn’t do the trick.
 
 
Saline has by far been the most beneficial treatment during the 18 months I’ve now been bedridden. That’s 18 months horizontal in a dark room having the world’s longest staring contest with the ceiling—no breaks, no “I’m just gonna go outside to grab some fresh air.”
 
 
For months orthostatic intolerance and extreme muscle weakness, among other things, have riddled my body leaving me unable to lift my head, stretch my limbs, or produce any sound more audible than clicking my tongue.
 
 
Now, however, with daily saline infusions I can sit at a 45 degree angle and speak polysyllabic words, sometimes even short sentences. And people can actually hear me. It’s wonderful. To go from mute to audible is an invigorating and albeit humbling experience.
 
 
Don’t get me wrong, my life still sucks. It’s anything but peachy and I’m a pretty optimistic guy, but I’ve found that hope and love always trump desperation and despair. Luckily I have hope and love through my friends, family and the MECFS community. And in this single moment in time that’s all I need.”

 

4 Comments for : Share your Story: Jamison Hill
    • Victoria
    • July 31, 2016

    Make sure you’re sitting up when getting those saline infusions. Otherwise, it may go to your head and cause problems as I read in the National Forum, a newletter put out by the National CFIDS Foundation (www.ncf-net.org).

    Victoria

    • Jeff Smith
    • August 12, 2016

    Hi Jamison, you where one of the many I took to my heart while watching The Forgotten Plague. Seeing someone in their 20’s so positive and physically fit having their life disappear from this illness sends a strong message to everyone who sees or hears your story. And good things are going to come from that. I know it. I am thrilled to hear an update from you and hear that you have received some relief and improvement. You have no idea how good that makes me and so many others feel. We celebrate this with you and know what a big deal it is. I have learned to redefine quality of life as a moving target now and know how much additional quality of life this small change means…. hugs and support, Jeff

    • Jamison
    • August 18, 2016

    Thx Jeff. Very kind of you. We must be kindred spirits because you wrote that on my birthday.

    • Jennifer Carlson
    • August 18, 2016

    Jamison, would your mother be interested or willing to connect with me? I am navigating the role of full time caregiver for my daughter with ME/CFS and could use some guidance. We have an appointment at OMI at the end of September…we are traveling from TX and I’m not sure how to navigate and handle if they need to see my daughter for future appointments. I’m trying to gather all the info I would need for our first appointment with them. I would be very grateful. jenerickcarlson@sbcglobal.net

    Watching your story and praying for you. Thank you for finding a purpose in every day.

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