The Importance of Environment

Think about the way your dentist’s office smells. When that smell is in the air, how does it affect you? Do you start to feel anxious or uncomfortable like you Would rather be anywhere else? Does it trigger memories of previous appointments, maybe that one time when the dentist poked the wrong spot and stabbed you in the gums?

Our environments have a much stronger influence on our feelings and behaviors than we often realize. Even when we’re consciously aware of some of a particular environment’s effects, there are others at play that we don’t realize. Personally, if I’m trying to accomplish something, the worst place I can be is the spot I wake up in every day: my bedroom.

I’m very comfortable in my bedroom. I have a large bed with plenty of room for both my 6’1″ 200lb body and my laptop. Distractions are few and far between living on a quiet street surrounded by trees which muffle most sounds emanating from the nearby highway. Inside the house is equally quiet, as I live with my quiet, predictable parents. To get even more comfortable with my surroundings, I recently covered my plain white walls with images that excite and inspire me:

posters
I’ll write about my walls in this blog at some point, but for now you can read more in this Reddit post.

However, laying in bed in front of my laptop is the way I spent most of my time during my worst years. After spending so many years feeling like crap wasting time on my laptop while laying in bed, I’m now conditioned to do exactly that: feel like crap and waste time on my laptop whenever I’m laying in bed. I browse Reddit, check Facebook, and search YouTube. The only productive thing I regularly do while laying in bed is my daily moneymaking routine which usually consists of an hour’s worth of whichever marketing jobs are available for the day, earning me a few bucks.

It’s hard enough dragging my ass out of bed on days when I feel relatively fine, but if I’m behind on sleep or otherwise dealing with additional fatigue it can be a real challenge. I started becoming aware of the fact that I subconsciously look for any excuse to stay in bed a little longer, fooling myself into thinking I’m being productive. For example, I have a set of tools I developed to complete those aforementioned marketing jobs more quickly and efficiently – I’ve made buttons to copy-and-paste email addresses and social media links, take pictures of the screen, etc. If I think of a way to improve that program by adding a new feature or improving an existing one, I can stay in bed for another hour while I write some code.

My solution to the problem of my room is simple: get the hell out of it. Not only do I bring my laptop somewhere else, but I have a separate user account that I log into while using my laptop out in the world. This account looks like a fresh install so there are few desktop icons and no programs that start automatically to minimize distractions. I originally created this account to use when I do the Rick’s Music World open mic livestream each week. I wanted peace of mind knowing that I could leave my laptop unattended without my personal files being accessible. Over time, I realized that this account is also a great way to separate myself from my routine.

The library down the street has free WiFi and quiet rooms that can used for up to two hours per day. I’ve yet to explore any other options, but there are plenty: libraries in surrounding towns, restaurants like McDonald’s, Dunkin’ Donuts, local cafés, etc.

The only way I was able to write this blog entry was by getting myself out of my unproductive environment.

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A Reminder To Myself To Always Challenge My Limits

The last time I tried to be active for three days in a row (by active I mean waking up at a decent hour, taking stimulants so I can function, and leaving the house), it didn’t go so well. After the first day, I went to bed hoping to rest up and recharge, but I didn’t get as much sleep as I needed. I was hoping that I could catch up when I went to sleep after the second day, but instead I woke up after only three hours of sleep. After tossing and turning for an hour, I recognized that I was definitely not going to be falling asleep again so I started my day.

I can handle one night of insufficient sleep, but any subsequent nights leave me in very rough shape. Lack of sleep amplifies all of my symptoms: brain fog thickens, every muscle of my body aches, nausea increases, and an overall feeling of severe discomfort comes over me. This is precisely what happened the last time I tried to be active for three days in a row. Making matters worse, the third day was a Thursday. That evening, I went to the open mic at Rick’s Music World like I do every Thursday to run the Facebook livestream and see all of my friends there. Usually, socializing with everybody and playing music can take my mind off of my aches and pains while I’m there, but on this particular occasion there was nothing I could do to distract from the discomfort. I knew that I looked as miserable as I felt, which really had people worried because everybody at Rick’s is used to seeing my at my best when I’m there. This unpleasant time was the worst yet of several bad experiences I had attempting to stay active for more than two days within the past few months at that point. Much like touching a hot stove, we as humans learn to avoid things that hurt us. During the last couple of months, I made sure to get lots of sleep and rest between my active days. I’ve mostly been getting as much as I can get done one day, resting the next, and repeating, with a few double-headers here and there.

Although it’s human nature to avoid things that have caused us pain in the past (and those who are constantly sick learn to do this even more than the average person), one of the most important things I’ve learned over the past couple of years is that I constantly need to be challenging my limits. Sometimes our situation changes but we don’t realize it because we’re still playing by the old rules. I have lots of memories of certain scenarios causing me pain and discomfort: things like travelling, standing up in the same spot for long periods like at concerts, and car trips causing nausea and muscle stiffness. These memories caused me to avoid a lot of things for a while. After getting myself a bit better, I’ve tried to overwrite those bad memories with good ones and I’ve achieved that in many situations.

I reflected on the changes that I’ve made over the past couple of months and figured that I was due to give a three day streak another try… and guess what? It was a success. I’m writing this at the end of day three. Yesterday was a little rough, but I still accomplished what I set out to do. I wanted to go to some thrift stores and look for some things that I could flip for a profit on eBay. I called up my friend Laurel to see if she wanted to come with me, thinking that socializing might help distract me from my aches, and I was right, it worked. I went to bed last night hoping that I would not wake up after three hours as it happened last time, and I fully expected my body to demand many hours of sleep. I was pretty sure I was going to wake up at 5pm. To my amazement, I woke up at 2pm feeling totally rested and ready to face the day!

This experience just reinforced everything I already knew in the first place. Any time I suspect my situation has changed even just a little bit, I need to re-evaluate my limits and see if I can push the barricade around me a little bit more. I got a lot accomplished during these three days, and I hope I can repeat this experience soon.

I considered using this post to explain the pros and cons of keeping momentum for several days in a row like this, but that’s a post for another time.

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.

Sushi

I went to PAX East today. It was awesome, and maybe I’ll write about it more later, but some pain just subsided and I want to sleep now.

During my teens I had a few years where I dealt with severe abdominal pain pretty much daily. It was the least favorite time of my life and it’s the symptom I’m most afraid of returning. Almost all of my memories of taking the train into Boston were during these years, I saw a stomach doctor in Mass General for a while and spent a lot of time on that train in awful pain. Since feeling a bit better, I’ve been replacing memories of things I associate with bad moments with new, good memories. Part of why I wanted to go to PAX was to do just that since I took the train in. It was all going according to plan, until…

My stomach was a bit off when I woke up, and a little more off after a churro and pretzel at PAX. The group decided to stop off at a sushi place afterwards and I had been meaning to try sushi at some point anyway, so I took this opportunity to do just that. Big mistake! When I got home, the pain really started, and it felt a lot like it used to during those years. I had a few types of pain back then, one felt like food was grinding against ulcers in my intestines (doctors claimed they couldn’t find ulcers, but oh well), and another felt like my intestines were filling up with gas to the point where they were stretching so much they were treating. That’s the type of pain I got tonight. It started about 5 hours ago and I’m just now finally farting out the rest of the tension. I vomited a bit earlier that helped as well.

Luckily, my sick sense of humor finds the irony here funny. As long as I don’t get this kind of pain again any time soon, I’m good with this. PAX was still amazing, and I don’t even regret trying the sushi. Now if someone asks if I’ve tried it and I say I didn’t like it, if they try to argue with me I can tell them it caused this stomach pain! I plan on taking a trip into Boston soon to see an old friend, too, so that can be my opportunity to finally replace those bad “train into Boston” memories with some good memories.

Testosterone

I missed talking about a lot of things during the last few months when I wasn’t writing in my blog, and this is one of those things. It has all the features of a good blog post: It’s a story of success, and a story of how many healthcare professionals are completely incompetent.

My low libido has been a source of anxiety during my entire life. It has had a negative impact on every relationship I’ve ever had, starting with my first one at age 14, continuing to my most recent one in my early 20s. Despite that, it’s not an issue that I’ve addressed until recently because I had bigger problems. When you can’t even get out of bed, it doesn’t seem practical to worry about getting turned on. Now that I’ve made decent progress with my more important symptoms, I decided it was time to start dealing with my penis.

In early 2016, I asked my primary doctor for some blood work as I do from time to time, but this time I asked him to check my testosterone level. Like I always do when it comes to anything health-related, I educated myself about testosterone and what causes the levels to change over the course of the day. I learned that testosterone levels are highest during the first couple waking hours of the day, and that when getting your levels checked, you need to get your blood taken during these first hours because they use the high levels as a baseline. I called in to set up my blood work appointment and the nurse kept trying to write me in for a 7am appointment. I explained to her that my sleep schedule was unusual – my day usually started around 12pm-2pm, so I needed an appointment around then. It took a few calls back and a little arguing, but eventually they wrote me in for 2pm. I got the results, and my testosterone level was on the lower side of the normal range. It was not low enough for any treatment.

Towards the end of 2016 I had a physical, so again I asked to get my testosterone levels checked. I explained to my doctor about my situation earlier in the year, explained why testosterone is checked during the first couple hours of the day, and explained my sleep schedule. He said “Let me check with our endocrinologist and we’ll give you a call.” Endocrinology is the study of hormones. This is basic, fundamental stuff so I figured a hormone specialist would know what to do (you would think I’d know better by now). Sure enough, I got a call back later in the week asking me to come in at 7am. I called back and spoke with the nurse there that the endocrinologist to either write me in for a 2pm appointment or explain to me why I’m wrong about this. I explained to her how people with unusual illnesses like me need to know these things because doctors are so clueless. She told me she would again leave a message for the endocrinologist and get back to me. Sure enough, I got the call a few days later. “Hello um, Adam? So uh, the endocrinologist said um, you need to come in at 7am because uh, um, so the test can be accurate.” I started to argue back explaining that if I had my blood drawn at 7am that would be the END of my day and therefore levels would be very low and the doctor would be concerned, but I stopped myself. “Fine, let’s try it their way.”

Sure enough, I got a call a few weeks later. “Adam? Yeah, your levels are very low and the doctor is concerned.” Shocking! They put me on a testosterone supplement, a topical ointment. As I looked into it, I found that the cream is the worst form of taking testosterone. When you think of guys taking a testosterone supplement you envision them injecting it into their leg, right? Well, there’s a reason for that. The cream is very unpredictable – sometimes the body will absorb 30% of what you rub on your shoulders and other times 70%. It causes a roller-coaster effect of your hormone levels so some days you’ll be getting random erections and other days you can’t get any action going on down there. Oh well, I figured I would give it a try so I could experience what higher testosterone levels felt like and if it was indeed the answer to my libido problem. I set up another blood work appointment (at 7am again) to follow up on my levels after a couple months of taking the supplement, and the fun continued.

I was told to go to Brockton Hospital for my follow-up bloodwork. It would have been easier for me to go to the doctor’s office as it was much closer, but I went there as instructed to. As soon as I got home, I got a call from the office. “Adam, did you go to Brockton Hospital? We were expecting you here at the office.” The icing on the cake was when I got the results of that test. I was interested in seeing how my levels had changed after a couple months of treatment. Instead, I opened up the envelope to be informed that “Adam, your prostate is fine.” Well that’s cool, but what about my testosterone levels?

Later this week I meet with the chump endocrinologist. I’ve read a bit about what I can expect during this appointment. Maybe he’ll continue with the cream, or if I can convince him to switch me to the shots, he might prescribe a low dose that will cause a similar roller-coaster of hormone levels. I’ll probably end up having to find a competent doctor in Boston to give me what I want.

Did the testosterone work, though?

Hell yeah it did. Before this, I imagine if most people thought back to the last time they were really horny it would only be a matter of hours, but I can only really recall one moment in my life when I was really horny in my late teens. Since being on this testosterone though, I’ve had a healthy sex drive as a young man like myself should. Look out, ladies.

 

 

Stimulants and Sedatives

For me, insomnia comes in waves. I will have no issue sleeping for a few months, then I’ll have a few weeks in a row where I can’t seem to get a decent night of sleep. What’s most puzzling this time though is, I’ve made several changes lately that should have made getting to sleep (and staying to sleep) easier:

  1. I’ve lowered my Adderall dose, which has helped my shoulder pain a lot. My amphetamine tick is rubbing my fingers together, which causes a repetitive strain injury in my shoulders.
  2. I’ve had more regular physical activity than I’ve had in many years, going to the gym regularly.
  3. I’ve tried all sorts of additional sleep aids available to supplement the Trazadone/Seroquel with: Unisom, Benadryl, Valerian, etc. Anything with limited risk to my brain chemistry.

Nothing worked… so I’ve resorted to something I’ve deliberately avoided my entire life: benzodiazepines. Benzos aren’t something that should be taken every day, because physical dependence happens fast and it sounds like benzo withdrawal suuuuuucks.

A while ago my psychiatrist offered me Temazepam (Restoril), but I needed to take medication to sleep every night, and I was not willing to deal with the problems that came with taking that nightly. A while after that, I was experimenting with all sorts of different things, looking for something stimulating to take during my Adderall break days. The only thing that cut through my severe fatigue at all was the curiously named CRL-40,941, commonly referred to as Flmodafinil among other things. It is one of many Modafinil analogues and perhaps the strongest. It is art of a class of drugs called “wakefulness-promoting agents.” Well, that description is very accurate. In fact, I was not able to sleep at all the night after taking it. After reading up it appears I am not the only one with this problem after taking modafinil analogues, and benzos are the only thing that works for others in this situation. Still though, I held off on the temazepam and just stuck to my Trazadone/Seroquel combo. I am still going to try using the night after a dose of Flmodafinil, but if my current bout of insomnia increases, I’m going to need to use it occasionally when I am in dire need of sleep after falling far behind as well.

The experience of getting prescribed it brought back some familiar sad realities about the healthcare system – many drugs that should not be taken daily are prescribed to be taken daily, and without warnings of the consequences. Before taking a new drug I always learn all about it for myself first. I read up on dosing information, side effects, personal experiences, drug interactions,  the way it affects the brain chemically, everything. There is a lot that can go wrong when you are on a lot of medications, and many people learn that the hard way. There are many stories out there from people who trusted their doctor and took a benzo as prescribed – every day. A couple of months later they tried to stop and started having all these awful withdrawal effects.

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.