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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Not Like The Whiskey, blog by Jamison Hill

https://jamisonfit.wordpress.com/

Jamison was one of the PwME featured in Forgotten Plague.

His latest post, https://jamisonfit.wordpress.com/2016/09/18/a-dispatch-from-bed/, was originally featured on the Blue Ribbon Foundation's blog in July.

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 a small mountain town in rural California.
 
New blog post by Jamison
It’s fair to say most people know, or can at least imagine, that constantly going without exposure to sunlight can adversely alter one’s mental state. Well, I’ll tell you, it’s definitely true. Constantly living in the dark can absolutely jeopardize one’s mental health, if not completely destroy it. Piggyback that on top of a debilitating disease and you’ve got a perfect storm. But if living in darkness can harm someone’s mental health, so can the chronic pain and immense weakness people with MECFS feel when exposed to that same sunlight. It’s a lose-lose situation no matter how you look at it, all you can do is try to be proactive and hope things get better.
https://jamisonwrites.com/2016/09/25/an-abundance-of-eyewear/
 
New post, hopefully more posts means he's feeling better.
Show M.E. The Money
Tuesday was a bittersweet day. I felt the hype yet I was hundreds of miles away from the excitement. Masses of protesters gathered in 25 cities all over the world and many, many more took to social media. From a distance I could tell all of the protesters brought something unique to the day’s events. One brave woman, Janet Eastham, stood outside the Department of Health in London completely naked holding a sign saying “YOU CAN’T IGNORE M.E. NOW.” The use of “M.E.” was, of course, a double entendre referring to how the government cannot ignore a naked body standing on the street, and in turn, cannot ignore the disease (M.E.) afflicting that body.

https://jamisonwrites.com/2016/09/29/show-me-the-money/
 
Smashing Pumpkins And Other S#%t

I love to break things. Yeah, I know, who doesn’t? But I get such a satisfying feeling when I break something. Maybe not a bone, or a really expensive gadget, but breaking something cheap and discardable is satisfying. VERY satisfying!

In 2011, after I was sick for a year, but had yet to learn much about MECFS, I remember being so incredibly angry — angry about the uncertainty of my health, angry that I had an invisible disease only I could see. At least back then I had some energy I could use to unleash my anger. I broke ceramic plates and cups, wood cutting boards, and on one occasion, I even destroyed two pumpkins and a ridiculously large zucchini my neighbor gave me. My buddy, Thomas, and I took our baseball bats to the backyard and pitched the giant produce to each other. Soon pumpkin guts were flying everywhere including at my face. It was fun and cathartic. I haven’t experienced such catharsis since. And seeing as today is National Pumpkin Day (I know, there’s a silly day for everything. I still can’t believe I forgot to celebrate National Oysters Rockefeller Day. WTF?), I must say I miss bashing a big pumpkin.

https://jamisonwrites.com/2016/10/26/smashing-pumpkins-and-other-st/
 
Latest blog by Jamison
You, ME and CBT
My doctor recently suggested I incorporate cognitive behavioral therapy (CBT) and graded exercise therapy (GET) into my treatment plan. When he made the recommendation I did my best not to scoff, but because my vocalization is limited, it was about all I could do to let him know that his education should have taught him better. I mean, he might as well have said, “Hey Jamison, I’d like you to try smoking cigarettes to treat your symptoms. Start slow, maybe a few a day, but your long-term goal should be to smoke at least a pack a day. Sound good?”

Now if you just said, “Wait, there’s no way a doctor would ever suggest a treatment that’s as harmful as smoking cigarettes,” or something along those lines, let me tell you, that comparison is not hyperbole. At least not as it pertains specifically to GET. On the other hand, CBT doesn’t seem to be harmful, but I’d classify it as a method of coping with the byproducts of a horrible disease rather than an effective way of treating that disease.

https://jamisonwrites.com/2016/11/01/you-m-e-and-cbt/
 
You, Talkin’ To M.E.?
I had visitors this past weekend. It was the first time in months that someone from out-of-town has visited me, and despite what some of my other posts may suggest, it was certainly the most active I’ve been while being bedridden.

Stephanie Land, a wonderful writer and friend who works with the Blue Ribbon Foundation, came all the way from Montana with her daughter, Mia. Janet Dafoe and her Daughter, Ashley, visited as well. The foursome drove more than three hours from the Bay Area to my house in the Sierra foothills, and while I know I wasn’t the only reason they made the trip, the visit was definitely the highlight of my weekend.

On Saturday evening, I spent a few minutes talking with each of my visitors, and when I say “talking,” I mean my lips moved and words, audible sentences even, actually came out of my mouth. I must clarify this because as I’ve learned while being severely ill, there are varying degrees of talking and I seem to have gone through them all. Unlike my past attempts at vocalizing, this talking was distinctly audible. It was a beautiful thing.

https://jamisonwrites.com/2016/11/16/you-talkin-to-m-e/
 
4 Things NOT To Try When You’re Sick
In the six years that I’ve been sick I have literally tried every possible remedy you can think of off the top of your head. The most annoying questions I get almost always start with “Have you tried…” to which I usually reply: “Yes.”

“Have you tried essential oils?” Absolutely. I’ve tried them all. And by the way, why are they called “essential?” I mean, sure they are good for you, but I wouldn’t call rubbing eucalyptus oil on my chest essential to anything, except, I don’t know, smelling like Vicks VapoRub. I mean, I’ll definitely survive without eucalyptus oil, and it certainly isn’t going to cure cancer, or in my case, MECFS.

I realize that the people who make these suggestions usually have good intentions. Some may be a bit sanctimonious or didactic, but at least they care. And to me there is no greater gift than caring about another person, no matter how annoying or pushy it may be. I really do appreciate people taking the time to try and solve the riddle of my health. So for that reason, I would like to devote this post to mercilessly making fun of these wonderful people and all the thoughtful, yet unsolicited health recommendations they give.

https://jamisonwrites.com/2016/12/11/4-things-not-to-try-when-youre-sick/
 
I’ve had some exciting things come my way recently. Men’s Journal published my essay, “Life Without Sex,” yesterday The Oregonian featured an Op Ed I wrote, and now I’m so incredibly proud to announce that the National Academy of Fictitious Accomplishments (NAFA) has named me The Healthiest Sick Person in America. I must say, after a rough year, receiving this honor was a wonderful way to cap off 2016.

https://jamisonwrites.com/2016/12/24/the-national-academy-of-fictitious-accomplishments/

WARNING: For those ladies and gents who appreciate the male body, Jamison includes a picture of him pre-illness which may raise your heart rate somewhat - you have been warned ;) (That should boost the click throughs a bit!!)
 
“It was a shock to have my life interrupted by a very real health problem. I’ve always taken great care of myself and I was pretty sure that was supposed to count for something.”

-Tippi Hedren

I’ve always been a righty. When I played baseball in high school, I batted and threw right handed. I always used my right hand to write, and pretty much anything else you can imagine I did right handed. But almost everything I tried to do with my left hand I was terrible at. Actually, not just terrible, I was clumsy and awkward and kind of resembled someone with full-body numbness trying to have good coordination. I remember playing basketball in middle school and trying to learn how to do a left handed lay-up. My coach might as well have asked me to drive blindfolded.

https://jamisonwrites.com/2017/01/08/how-to-become-ambidextrous/
 

ash0787

Senior Member
Messages
308
Haha thanks. Yeah. Just a long hiatus I guess. You know how it goes.

hey I liked you in forgotten plague, that film had a big impact on me when I watched it, I wondered what happened to you and whether anyone online knew who you were, in the film it said your health was deteriorating but you were going to try a new medical trial, it sort of resonated with me. I guess that was a while ago though ( I only saw the film 6 monthes ago )

https://www.mensjournal.com/health-...get-to-tell-you-about-chronic-illness-w449761 this is very true man very true, I noticed not many people mentions it and when I inquire they seem to be unsure of what I mean. Its probably different in your case but for me I think its 75% of the 'aerobic damage' that I sustain, the damage it causes is somewhat disproportionate to the physical movement of the muscles if that makes sense.