I want to confess a few things and share some raw, bloody truths. I want you to enjoy a laugh or two at my expense. This morning, I feel compelled to catalog my misfortunes and misadventures. So here goes. I’ve been ill for around 10 years, and I’ve no doubt this list will grow over time as I remember more things that belong here.
I walked down a snowy trail one morning in 2007 crying hysterically and shouting loudly “I want to live” over and over. After stopping Ambien abruptly, my nervous system had gone berserk. On top of the chronic fatigue, physical weakness and stomach pain that had dogged me for a couple years, I now had motion sickness, anxiety and insomnia. I felt like I was dying.
Looking down from a bridge at a fast-moving icy river below, I imagined jumping in and experiencing relief from all the pain. All I could see and feel in my life was pain and suffering stretching back a couple years with no end in sight. Then I thought about my kids back in Florida and got back in the car.
We moved out of Florida on a moments notice when my health was spiraling out of control and lost all of our home equity and savings. The financial crisis was raging and our house was surrounded by homes in foreclosure. So, at the closing, we ended up paying the buyer of our house a big chunk of money, the last of our savings, to take the house from us.
Although I was raised as an atheist, I started praying. As they say, there are no atheists in foxholes. I particularly liked the serenity prayer and “Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me…”. I also like something I read in How to Stop Worrying and Start Living which goes simply, “Oh lord, thy will be done, not mine.” Now, I say my own prayer when I wake up which is more like a reminder of how I want to live my life every day. I don’t worry too much about whether God exists or in what form – I don’t need to know, there’s still magic in letting go of the idea that we control everything.
I enjoyed reading survival books. Two in particular that were very memorable include Angels in the Wilderness: The True Story of One Woman’s Survival Against All Odds and Deep Survival: Who Lives, Who Dies, and Why.
Six months before discovering my heavy metal toxicity, I spent a couple thousand dollars building a rocking bed. A couple times a year (before starting my current treatments) I would miraculously sleep for six hours uninterrupted and feel 80% better the next day. Poor sleep quality might be my oldest symptom, going back to when I was 10 years old, so I thought maybe sleep was the root of everything. I thought about how easily and well I slept on a train or airplane and began looking at the idea of trying to simulate that in my bedroom. When I came across the Swiss rocking motion study, I knew what I had to do – build a big rocking cradle! I automated it with a motor and everything. Although it didn’t fix my sleep it was a very fun project and I like my swinging bed a lot. I’ve since stripped the motor off it to use it on another project, but still enjoy feeling the bed rock momentarily when I move around at night.
Before I built the rocking bed, I played the noise of a train at night through speakers sitting on a board that ran under my mattress. I loved the sound of the train but the vibration made me nervous and I couldn’t sleep with it. Bizarre because I sleep so well on a train.
For a couple years, I ate 4 to 5 pounds of broccoli a day. On my flight to the Mayo Clinic, I almost caused a riot on the plane because of the noxious gas I was producing. Why was I eating so much broccoli? Cortisol ruined my stomach lining but eating relieved the pain. I decided to eat constantly instead of using proton pump inhibitors (which I also did for about a year) and broccoli seemed to work well, allowing me to eat all day without gaining weight. Ironically, I eventually discovered that I only needed to stop taking all supplements to let my stomach lining recover. That’s the one contribution to my recovery made by the Mayo Clinic – they suggested I stopped taking supplements.
An Angel investor put $1.3 million into my Internet company a couple years before I became very ill. Needless to say, it hasn’t been a good investment and may soon result in a near total loss for him. My company is still alive and kicking and could stage a comeback but so much time has gone by, that my investor is now at the point where he’s putting his affairs in order so he doesn’t leave a mess for his kids. Even though the loss won’t affect him materially, at times, the situation makes me feel like vomiting.
I purchased a house that I couldn’t afford where I hoped to recover. While still recovering from my nervous breakdown, my landlord gave us 30 day notice to leave the house I was renting. I couldn’t find another house to rent that was large enough to accommodate the two offices we needed and met all of my health needs (near enough to my parents, no fresh paint or rugs, no mold, at least four years old, near the mountains for clean air, etc) and then the perfect house appeared, two blocks from where we were living with everything we needed and more. The owner had allergies and built it to minimize them with no rugs and radiant floor heat. I tried to convince the seller to rent it to me but he said no. It was a very expensive home and we had been cleaned out by our emergency move from Florida. So, I called my investor and tried to convey the idea that if I didn’t recover my health, there was no company. Naturally, he didn’t like the idea, but gave me his blessing, and I’m eternally grateful. That was one of the most painful phone calls I’ve ever made in my life. Didn’t want to do it, but I couldn’t see any practical alternative. Along with the money we spend on organic food, supplements and therapies, the house has kept us living on the edge financially.
I hate Facebook but still read it like a moth drawn to the flame. I’m reminded every day I read updates from family and friends how wonderfully frivolous and oblivious most people’s lives are. I’m reminded that no one wants to hear about my steady stream of misfortune and suffering ticking off day by day, month after month and year after year. Facebook is mostly for clever, lucky, active, healthy people living beautiful shiny lives. I’m reminded that the people who read my blog are my fellow sick or recovering friends. No one else can stomach it. I’m still struggling to understand this but I think I could summarize it like this — if you didn’t get hurt in some easy to understand way and suffer relatively short in duration like an accident, natural disaster or have cancer, you won’t find much understanding in the mainstream. On Facebook, you’ll do best to look for private health groups.
Walking barefoot on rocky trails helps my sore feet. Because I can’t run due to exercise intolerance, I began walking up barefoot and trotting down barefoot. It gave me the feeling of speed almost as if I was running again, with some danger thrown in – very exciting. Later, I decided my exercise was wearing me down too much and now I do much less. I’ve since invented a number of dynamite massage tools (with possible commercial potential) that I use every day for dealing with my tendinitis.
For a couple hours, I can fake being healthy. I guess that’s pretty cool. It’s getting easier too as some of my symptoms are fading with my current treatment.
Living on the edge financially and physically for the last five years has frayed our nerves terribly. I’d say we have a good case of combat exhaustion and are close to having post traumatic stress disorder. We need relief and we need a vacation.
Ok, I feel better now… did you laugh?