Things On My Mind – 1/20/2018

I’m typing up all the thoughts in my head without rereading the post or editing. Enjoy the ride.


People enjoy hearing storing of overcoming life’s obstacles, so I share them when they happen and I have a pretty good one at the moment.

I don’t think I’ve ever enjoyed feeling shitty as much as I did the past 48 hours. I did a lot this week so last night I hit my limit and started having exhaustion symptoms. When this happens I get dizzy, sweaty, nauseous, and have trouble thinking clearly. Standing up is like tipping over an hour glass and I only get 30 seconds on my feet before I start vomiting. I can usually feel this coming – I basically start feeling milder versions of all these symptoms. I can avoid vomiting by heeding the warning and laying down and staying hydrated.

Last night, an exceptional night of music was coming to an end at Rick’s when I started feeling this coming. There was a problem – I was totally out of food at home and needed to go shopping. I decided to try and get it done anyway because I was going to be either equally tired or worse the next day. I had about 10 minutes left of shopping to do when exhaustion moved into its next stage and for a few minutes I thought I was going to puke in one of the aisles. I tried to speed things up and finish. My cloudy mental state led to a couple of unusual purchases, like a boneless frozen turkey (I didn’t see the chicken breasts I was looking for, and it was close enough). I usually use the self-checkout but I looked for one with a cashier so I could lean on something for a few minutes but none were open. I could tell that I was visibly exhausted, and employee noticed because as I approached the open self-checkout station, she saw me and asked “Would you like me to ring you up on aisle #?” It gave me a minute to lean over and get some temporary relief from the discomfort. I sat in the car for a minute to make sure I could drive home, and I did. After laying in bed for a half hour I put the groceries away the only way I could: by sitting on the floor next to whichever drawers I was putting food into at the time, spending 30 seconds here and there on my feet because that’s all I could do. After another short rest, I realized there were some other things I needed to do so I put together an environment of distractions to surround me while getting it done. I threw on a Macho Man Randy Savage documentary and had a chat with my brother, keeping me occupied.

Today I woke up after a decent amount of sleep hoping it was enough to hold off the fatigue but I got that feeling of impending exhaustion again at 6pm. I had plans with friends at 8pm that I was really looking forward to. I kept my plans, but took some precautions. I got a ride there and back in case I became too dizzy to drive home safely. I made it. I ended up drinking a shitload of water and taking a lot of Adderall. The physical energy it provides is the first effect to wear off after 4-5 hours (the other effects, mental energy and wakefulness last for a good 20h) so I had to keep re-dosing to postpone the crash and it totaled a large (but safe) amount. I had a great time playing music and having laughs with friends. While the feeling of lingering exhaustion never left me, staying engaged socially prevented it from being an obstacle. I eventually did hit that point where I needed to stop, but when it finally happened, we were all sitting on a couch playing a game so I didn’t have to stop doing what we were doing and everybody was heading home a half hour later anyway.

Exhaustion aside, even though by now it’s been a couple years reconnecting with old friends and building a larger social circle than ever before I still don’t take moments like this for granted. Every few hours I at my surroundings and think “Whoa, this is my life now? I have many of the things I wanted all those years?” I don’t mean to harp on it, but it was only a few years ago that it still seemed beyond my reach and in fact many of the things I’ve been doing I couldn’t even imagine.


I have some interesting things on the horizon. Coincidentally, several opportunities to play live music have landed on dates this week and next so music-related brainstorming and preparation what’s currently occupying much of my time.

A couple days ago, I attended an open mic in Providence that featured some of the most unique and talented performers I’ve ever seen. I checked out all the open mics in the area last year to make sure I wasn’t missing out on anything and while I met a lot of nice people, none of them were worth returning to. I guess all the exceptional people have been in Providence all this time. It took place in a small art museum with wooden floors and walls which provided a unique environment with lots of reverb. There were a few dozen people there and each performer got 5 minutes, keeping a quick pace. Get a load of this, I saw:
• Musicians playing a wide variety of instruments (a couple of which I’ve never seen before)
• A guy that played the banjo while singing in an odd Mongolian folk throat style
• A few comedians including a man that was deaf until age 40 cured by a cochlear implant. He looked like Barney Rubble and told a lot of self-deprecating, morbid jokes and was hilarious.
• A female duo named Fanny and Dani, an accordion player and vocalist who sang a medley of songs in French. They were my favorite. Actually, they’re going to get their own paragraph:

When I started taking Baclofen 2-3 years ago, the GABA it flooded my brain with caused me to enjoy music to such a degree that I was nearly moved to tears. The only way I can explain this that will relate to many people is by comparing it to alcohol which also fills you with GABA – if you’ve ever really enjoyed a song after drinking it’s due to a similar thing happening in the brain, it’s why people love to sing and dance after a few drinks. Anyway, I started to really feel music emotionally again for the first time in a while. I began to appreciate many genres that I never did before like classical, ragtime piano, and funk. I explored this new feeling as often as possible, I listened to all the bands I’ve ever loved and all the new bands I had discovered. I don’t enjoy music any less than I did during this time, but I haven’t had that euphoric feeling where my eyes start to water in at least a year. While these two were playing, I got that feeling again and it took a little bit of effort to avoid becoming visibly emotional.

I took a brief video with my cheap phone that I posted on my personal Facebook page:


People have been telling me for my entire life that I’m hilarious and should take a crack at stand up comedy. I always thought about it but considered myself to be more witty as in, I’m good at saying funny things spontaneously to comment on situations that occur in front of me. Creating the situation yourself from scratch in a stand up act is a different entirely. Plus, I don’t even enjoy stand up comedy. Much like TV and movies, when I’m medicated I’m too stimulated to enjoy sitting still focused on a passive activity like that and otherwise I’m too tired too follow it. Regardless, last year I decided that I was going to give it a shot but as 2017 started, it was one of the many goals for that year that sleep apnea derailed.

Although that forced me to wait, I started writing down any thoughts I had that with potential to be turned into jokes. I’ve written many things down since then, but it’s very similar to the way that I used to come up with riffs and jingles but rarely came up with full songs – I ended up writing down a lot of half-jokes, funny observations, and jokes with deliveries that were yet to be determined. While listening to these comedians at the Providence open mic, I was in my head brainstorming and connecting the dots to finish many of these jokes. What I’m getting at is, this open mic experience came along at the perfect time and is the perfect venue to give comedy a shot myself. I’m going to return in a month and try it for the first time.


As I’m writing this it’s 6:40AM. It’s not uncommon for me to stay awake this late into the morning when I’m planning on resting on the following day. Tomorrow I won’t have the ability to accomplish the things important to me now and in fact they won’t even be important any more, I’ll be too tired to care. I stay up late to cling to every additional minute that I can keep this momentum before slowing to a crawl and eventually starting again on Monday. The other reason I do this is so I can easily fall asleep without Temazepam. I didn’t have Temazepam in my arsenal until recently, and it’s no coincidence that I haven’t had to deal with any sleepless nights recently. Seroquel works partially in the opposite way that Adderall does – it blocks dopamine, which along with norepinephrine floods your brain when you take Adderall. That sounds like Seroquel would make for the perfect drug to get some sleep on these days and while it is indeed pretty good, it isn’t enough to work reliably. During the many years that I took Seroquel to sleep (along with Trazadone, a gentler sedative) I just accepted that insomnia was a part of my life, something that occurred at least monthly, sometimes weekly.

Here’s the problem (which I mentioned earlier). Adderall has three stimulating effects that help me function: physical energy, mental clarity, and wakefulness. The physical energy wears off after 4-5 hours, but the other effects last about 20 hours. See the problem? The rest of the world is going to keep living on their 24-hour clock without caring if I slept or not. If the day was 30-something hours long this health puzzle might be half as difficult, but in order to live a 24-hour day I have to do this constant push-and-pull with my energy level. I wake up tired and I go to bed wide awake every day. This led to a built of guilt for many years before I really understood how these meds worked and realized that expecting to sleep the way most people do was unrealistic. Once I understood this, I gained the freedom to do one of two things: I could explain it to people that expected me to go to bed at a decent hour and make them understand too, or if that didn’t work I could disregard their criticism because I couldn’t meet their demands even if I wanted to. You can’t go to bed early with amphetamines in your system, only later.

The original point I was leading towards but got away from is that the other reason why I stay up so late on my last day before a couple days of rest is that by waiting so long after my last dose of Adderall, Seroquel puts me to sleep reliably.


Perhaps I’ll write more of these “Things On My Mind” posts in the future. There are always things on my mind, but today’s situation was perfect for spontaneously writing out all of my thoughts. I’m very stimulated and the gears are turning in my head yet I’m too exhausted to do much else, and I had a very eventful week full of new memories and ideas.

Now if you’ll excuse me, I need to sleep for a couple of days.

What Sick People Are Sick of Hearing (You’re Probably Guilty of It)

I want to talk about something most people don’t think about and it’s something most people are guilty of without realizing it. If you know anyone who is sick – either chronically or temporarily – it’s something you’ll want to read.

I still stick around in some online chats related to the game I used to play/moderate and have developed and maintained friendships from people around the world. I began talking to one girl shortly before she was diagnosed with cancer. She’s a young girl in her early 20s, and it sucks to have to go through something like that especially when you’re young. She knows my health situation and that I find all health and illness topics interesting, so I told her to keep me up to date with the experience. We spoke off and on, she told me about all the shitty things she had to deal with – physical discomfort and the mental challenges that go along with some of the procedures… the cancer’s effect, the drug side-effects, uncomfortable preparation for exams and operations, etc. After talking for several weeks she thanked me. She told me that she spoke to many people about her situation, friends and family, but talking to me was so refreshing. It’s not because of something I did, but rather something I didn’t do: I didn’t tell her “You’re so strong, you’ll get through this!” “Keep fighting, we’re all behind you!” or anything like that. I listened and replied in a very matter-of-fact manner about the realities of dealing with such a thing: it sucks. I didn’t insist the future was bright, because when you’re going through such an ordeal you’re concerned with the here and now. She told me that my reaction was so refreshing because everyone just kept telling her to get through it and fight hard. On top of her existing pain and discomfort, comments like this also made her feel like she was letting people down by not being stronger throughout the ordeal. I explained to her that I reacted this way because I had gone through the same thing myself many times over for as long as I’ve been sick. When you’re sick or otherwise uncomfortable or in pain, people feel like they need to do something about it. In my experience, that means that they do one of two things: The worst of the two is they’ll offer stupid advice, suggesting you try something that either would have no effect or something that you’ve obviously tried when the problem first started. To give an example of each, one person suggested I try chicken soup to cure my ME/CFS symptoms, and another suggested that I try getting more rest. The other less ridiculous reaction people have is to offer verbal support: things like “You can do it! We all believe in you! You’re so strong, you can beat this!” Unless you’re the only person they’ve ever spoken to, they’ve heard this dozens of times already ad nauseum.

Often when somebody talks about the issues they’re having they just want somebody to listen and understand the things they’re going through. Personally, when I bring up the fact that one or many of my symptoms are really bothering me, all I want is for somebody to know that it sucks. That’s all I need. The pain or discomfort will pass, I already know what I can do (if anything) to help, but for now I just want someone to understand what I’m going through.

Sometimes I feel obligated to let people know that I’m not feeling well because I can tell that the discomfort is affecting my behavior. It hasn’t happened as much in recent years, but especially during my teens when my illness was just starting to take off I would frequently have people misread my body language. People would ask me why I was mad or sad when in fact I was just feeling sick. After so many years of this, I learned to explain myself before there was a chance for people to make any assumptions.

If you’re reading this and have been guilty of the things I mentioned in this post, don’t worry about it, most people are. You don’t need to apologize to anybody or even feel bad about it. It’s just one of those things most people haven’t realized or ever thought about. Just keep it in mind for the future and you’ve done your part.

The Absurdity of Healtchare

I learned a bit about how ridiculous the healthcare system is recently.

I had been taking Adderall just 2 or 3 times a week due to the side effects, so I was looking for something else to take during the other days. After some research I decided to Nuvigil (Armodafinil) a “wakefulness-promoting agent.” Once the patent of Provigil (Modafinil) expired, the company created Nuvigil to continue their profits. However, I had been on Provigil years earlier and read that Nuvigil is similar yet different in ways that made me want to give it a shot.

I asked my primary doctor which kind of doctor would prescribe it, and he told me neurology deals with that. I went on my insurance companies website, called some neurologists and asked if they prescribed Nuvigil. One did, and I set up an appointment. We met, I explained to him my situation, and he told me that I’m a great candidate for Nuvigil. Excellent! I didn’t realize it would be that easy. “There’s just one problem,” he says. “Insurance won’t cover it if I prescribe it, so call your psychiatrist or rheumatologist and I’ll guide them through prescribing it.” I’d never heard that one before, but I was hoping it would be an easy task.

I called my rheumatologist first since the neurologist claimed he knew the guy. My rheumatologist calls back and says “Sorry, but it would be better if you ask your psychiatrist.” Then, my psychiatrist explains to me that it’s very difficult to fight with the insurance companies to get them to prescribe a drug like this. Why? Well, they will say “Why not just take Adderall every day?” because it’s cheaper. They might cover if it I claimed Adderall didn’t work for me and stopped taking it, but I didn’t need a replacement – just something else I could take during the rest of the week. Insurance’s option for me is to either take Adderall every day or not at all, and neither of those options work.

This let me know that even if you find a doctor willing to prescribe you a drug, it doesn’t mean the insurance companies are going to go for it. It’s just yet another hurdle in the path of getting better. This situation was just one of many that opened my eyes to the fact that the healthcare system isn’t designed to make sure whatever the patient needs to feel better is done, no. It’s designed to make a profit, like everything else.

So what did I do? I kept looking, and discovered there is a legal alternative called Adrafinil that can be purchased without a prescription. Adrafinil converts to Modafinil in the body.

This entire situation, despite being a huge hassle and a game of hot potato with my doctors, taught me some valuable lessons about how to navigate our flawed healthcare system.

Explaining CFS to the Ignorant

We’ve all encountered some ignorant idiots in our time. Here are some situations I’ve encountered:

  • I told my primary doctor that I had been seeing for a year that I was going to apply for disability. His response? “Why?”
  • School teachers that tell you that they’re offended when you rest your head on the desk during class, how disrespectful.
  • Parents that think you’re just being difficult and don’t want to get up and go to school.
  • Randoms on the street that say “Chronic Fatigue Syndrome? Oh, I have that too! I’m so tired after working my 8 hour shift!”
  • Fatigue, so like what, you just get tired sometimes? Get some sleep and you’ll be fine.

 

We want them to understand how we’re feeling, but how? After years of dealing with this, I’ve learned a few things. You need to compare the feeling to something they are familiar with. When I first got the CFS diagnosis, I looked at some books and what I found was very depressing quote. I’ve since used it to my advantage to get others to understand me, however.

“CFS patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

By comparing the feeling of living with CFS to that late-stage AIDS, someone undergoing chemotherapy, it helps garner some understanding. People as a whole have a lot of sympathy for those dying of cancer and AIDS – many have had a friend of family member stricken with these ailments.

You can find more descriptive quotes here that really paint the picture of what life with CFS is like: https://thoughtsaboutme.com/quotes/

Chronic Fatigue Syndrome – What is it?

If you’re reading this, you probably already have a decent idea of what Chronic Fatigue Syndrome is, or you’re living with it every day… but I can’t have a CFS blog without a post about CFS, right?

Chronic Fatigue Syndrome is a very mysterious illness characterized by extreme fatigue and just about every unpleasant symptom you can think of – muscle pain, abdominal pain, headaches, sore throat, insomnia, etc. CFS is not an illness with a known cause, but rather a name given to a set of unexplained symptoms. After being tested for everything else that could possible explain the symptoms (AIDS, Lyme Disease, Lupus, etc) the CFS name is given.

In addition to this already giant burden, CFS sufferers have to deal with the stigma attached to the illness. Since these symptoms are unexplained and cannot be measured, some people (and even some doctors) doubt that his is a real condition “it’s all in your head.” These symptoms are not psychosomatic and it’s very offensive to be told these symptoms are imagined. It implies that the sufferer has some amount of control over his or her illness and chooses to keep suffering. Over the years I’ve learned some techniques to educate the ignorant.

Treatment varies from person to person as there is no common treatment. Personally, I disagree with a lot of the treatment suggestions out there which is partly why I’m writing this. One common suggestion you’ll see is to not push yourself. If never pushed myself, I wouldn’t know what I’m capable of and I wouldn’t have been able to experience my amazing trip to Maine. It’s smart to not go beyond your limits, but you could constantly be challenging your limits. Situations change over time, and you might be capable of something you weren’t last year. You’ll never know if you don’t try.

At first glance, CFS is an illness with no happy endings… but it CAN be done. It’s up to you to take control of our life.

How I Finally Got Better

It was January of 2014, and something needed to change. I had been taking Adderall every day many years, and by now, tolerance had diminished all of its positive effects. Taking it only prevented withdrawal. I felt a constant burning in my shoulders, I wasn’t sleeping well, and I had no energy. I needed to do something, but I wasn’t sure what. Adderall was the only drug that ever had a significant impact on me and without it I wouldn’t have been able to graduate college or have a life outside of my bed at all. The only way it was ever going to work again was if I took a long break from it to reset my tolerance, so that’s what I did.

The next year was about what you would expect from amphetamine withdrawal. I would sleep for 12+ hours a day, quickly find something to eat and lay on the couch for a few hours watching TV. I’d then go to bed, and restart this process every day for nearly a year. I had lost contact with most of my friends a couple of years earlier when things started getting bad, and during this time I completely dropped off the map. This was a very rough period and was the closest I came to losing mind since I had in my teens. When my symptoms first started in my early teens, between the sudden constant pain that only worsened and the loss of all my friends due to the fact that I couldn’t go to school anymore, I lost it and had to spend some time in a psych hospital. I had developed a strong mind capable of processing all of these issues since then, but the isolation this year almost pushed me over the edge.

When I felt like I had been off the drug for a sufficient amount of time, I decided to start taking it again. The whole reason why I was in this mess in the first place was because I took it every day, so I decided to cycle it. I would only take it a couple of days a week. It was amazing. I hadn’t felt energy like this since I started taking it in the first place as a teenager. It allowed me to function a couple of days a week, which at the time was amazing. I managed to pass a some college classes (one per semester) during this cycle. I was very fortunate to have these two days, however I quickly realized I wanted more.

I started using my two days of brain power to make use of the internet and research medications I hadn’t heard of before. I also learned a lot about how the brain works so I could tell which drugs might be the most beneficial to me, how to take them safely, and how to avoid tolerance. I had seen all the best doctors in the world for years and they couldn’t figure out how to help me at all. I figured it was worth a shot to try it on my own.

I never had much luck with rheumatologists before. Much like other doctors I saw, they would run their tests, find nothing wrong, try a couple of meds, and give up. In my experience if you go to a rheumatologists complaining of muscle pain, they will try you on Neurontin and Lyrica and give up. I read about a drug called Baclofen and brought it up to my doctor. He had heard of it, but he needed to get his tablet out and do his own research to learn how to prescribe it. I thought “He needs load up Wikipedia to learn about this drug?” Unfortunately, the maximum he was willing to prescribe was only about 1/3 of the dose I needed. High-dose Baclofen has a variety of benefits, and studies exist showing that these doses are safe and without side effects. In France, they use high doses to treat alcoholism with great success. Baclofen helped lessen some of the effects of Adderall, so I now had a winning combination to be even more productive on those two days.

I had been on Neurontin previously without success. I was taking it on my Adderall days to try and lessen my pain, but it has little effect. I thought “Why don’t I try it on my tired days and see what happens?”It is chemically similar to Baclofen, a medication I’d like to take daily but couldn’t get a high enough dose. I spoke to my psychiatrist about it and he wrote me a prescription. It was then that I realized I had been taking it all wrong before. I found if I take Neurontin the day after I take Adderall, I still have enough leftover dopamine floating around in my brain and when I throw the Neurontin on top of it, I’m able to keep my sharp brain for the rest of the day until I go to sleep. If I take Adderall 3 days a week and I take Neurontin the day after, that gives me 6 days a week where I can function instead of the previous 2-3.

I was still having pain, though. The various doctors I saw over the years were hesitant to give me any sort of painkiller despite my severe pain. For a couple of years I dealt with the pain by downing a pint of vodka a night, and that solution doesn’t last forever without causing some serious problems. I discovered kratom, a plant from Thailand. I read that it tickles the morphine receptors in your brain, yet it is safe and does not cause bad withdrawal. It is self-regulating since if you take too much it just upsets your stomach. It’s very popular in the chronic pain community as well as the opiate addict community since they use kratom to get off of more dangerous drugs like heroin. This all sounds too good to be true, why hadn’t I heard of this before? Well, it lived up to the hype. For the first time in my life, I had something I could take when the pain started getting too bad.

Now at my time of writing, my week looks like this – I am superman 3 times  week, tired but very functional another 3 days, and totally incapacitated one day a week. It’s not all perfect – I still have ups and downs: I might have a couple weeks of insomnia every few months, a week here and there where my fatigue is very bad, some pain, immune system flareups that dry out my skin, etc… but I am enjoying life. I got my friends back, I can go on long trips without being uncomfortable the entire time, I can start and finish projects, I can do things and enjoy it.