Humans of ME/CFS
Eric had ME for 20 years (diagnosed as CFS because doctors did not know better). He died at 46. He had almost no life that was normal in those 20 years, as he could not work or socialize and was mostly housebound. He was a kind, thoughtful, very funny, highly intelligent man who had been a machinist, an occupation that was almost a calling to him. He wanted nothing more than to be well and be able to work again and have a pre-ME life.
Eric had severe gut problems, pathological fatigue, post-exertional crashes, sleep problems, cardiac irregularities; sensitivities to heat, cold, light, noise, and chemical smells; plus other symptoms. His life was a living hell.
Here is an excerpt of something Eric wrote for The CFIDS (now Solve ME/CFS Initiative) Chronicle in 2008. He found some solace in becoming very good at ham radio.
“Travel the world without leaving home for $50 or less! By Eric M.
“Home bound, couch bound, and possibly even if you’re largely bed ridden, if you’re able to hold a conversation you can talk to people from around the world. These are nice people, many of whom are also disabled who are looking to chat with you. OK, so what the heck am I talking about? Well, it’s most often referred to as amateur radio. Yes, I know that reading may be hard for you and therefore you need to choose your material carefully, but you may really be able to benefit from this and I’ll try to keep it short. Plus you’ll really be surprised like I was.
“OK, if you are still with me I’ll hit you with the biggest surprise right now-YOU DON”T NEED A RADIO! If you have a computer, almost any computer, you can talk, not type, to people all over the country and the world using an inexpensive headset that plugs into the USB port on the computer. It’s free and it’s called Echolink and it has lists of all the states, including the different places in those states, and lots of countries that you can choose to talk to. You can learn about it at http://echolink.org/ but it’s only available to “ham” radio operators. Bummer, huh? Well maybe not.
“The truth of the matter is that it’s much easier to get an amateur radio license today than it used to be. There is even an entire organization called handi-hams whose sole purpose is to help disabled people get their licenses; check out http://handiham.org/. The Technician Class, which is today’s entry level class, requires no knowledge of Morse code at all and only the completion of a single 35 multiple choice question test of which you only need 26 questions to be correct to pass.
“There is an old amateur radio saying that says “There is no such thing as a fellow ham who’s a stranger. He or she is simply a friend you haven’t met yet.”