Welcome to Shaking Off The Chains!
My name is Adam, and many of you reading this are already familiar with me. If not, check out the “About Me” page I wrote last year.
The goal of this blog for the time being is to have all the things I write about ME/CFS in one place. Over the past couple of years, my writing has been all over the place: Facebook posts, direct messages to friends, Reddit posts, verbal rants, etc. I’ve written in this blog a few times but I’ve never kept up with it consistently. Over time I gradually started to receive a lot of messages, usually on Reddit, from people that found something I wrote and identified with it. Many of these people are where I was a few years ago and want to get to where I’m at now.
Over time this blog will evolve to include new features to become modernized. I need to add all the usual stuff like social media charms and an e-mail list. Right now though, I just need to make this public and get moving with it.
To provide context for some of the things I’ll be writing about, I’ll explain my life.
At the moment, I’m active about 4-5 days per week. By active I mean I’m up and out of bed, dressed, and can function both physically and mentally. I have enough energy to get through the day, socialize, and achieve my goals. I’m limited to 4-5 days because of the way these meds work: Adderall gives me physical energy and mental clarity but like all stimulants, tolerance builds fast and if I took it every day it would stop working in no time. The other issue is that a powerful stimulant requires a powerful sedative at the end of the day, and if I took Temazepam every day it would also stop working and worse, I would have to go through benzodiazepine withdrawal to get off of it. That doesn’t sound too fun.
I made a lot of progress in 2017. First, I improved my sleep apnea symptoms through weight loss. This was a big obstacle, making it impossible to be active for more than a couple days in a row due to the lack of sleep. Although these symptoms have significantly improved, some still persist. Next, I identified the cause and treatment of the severe nausea and vomiting that I developed in the middle of the year. I suspected it to be related to the motor tics and tensing of muscles that can occur due to stimulant use, it was wrenching my gut.
2017 also brought an achievement I believed to be impossible: I received my first paycheck! I’ve been able to do a lot of fun things over the past couple of years, but working in any capacity remained an impossible dream. It’s easy to do things here and there when I can plan ahead and ensure I’ve had enough rest but work requires predictable, consistent good health for the vast majority of days in the week. Since my early 20s, I’ve visited college career centers, disability services, and had several appointments with Mass Rehab which lead nowhere. The work I found wasn’t the result of official aid but from the social circle and connections I had built up.
Again, it was only four years ago that I could barely get out of bed, had been years since I spoke to any of my friends, and I found no enjoyment in life. I hope you enjoy following along my journey and find the experience informative and entertaining.
Soon I will change the main categories you see up top to something like this:
- Commentary: I’ll give my take on whatever topic is on my mind to give you a look at the world through my eyes.
- Treatments: I’m always reading about or experimenting with different treatments. I like to talk about my experiences and the things I’m learning and I’ll do so here (instead of random outbursts of “so guys, I’ve been reading about fluromodafinil…” at social gatherings).
- The Healthcare System: Quite often, finding the best treatment is the easy part – the challenge is navigating the healthcare system and acquiring it. The organizations meant to be on your side often become barriers. Between the FDA, DEA, doctors, insurance companies, and the pharmacy, there’s always a challenge and I’m still learning.
- Blog: My daily life, less formal writing and rants about whatever happens to be on my mind.
Feel free to reach out to me via email at firstname.lastname@example.org until I set up more convenient contact methods.