Surrounded By A Mess

There’s one thing which Chronic Fatigue Syndrome causes that nobody ever talks about: messy rooms.

If I’m in my room, I’m in my bed. Getting up and out takes all of my effort so when I need to go somewhere, all I can do is make a beeline to the outside door. By the time I get back home from wherever I was, I’m out of energy and will do the least amount of things required of me before getting back in bed. If I went grocery shopping I’ll put the food away, but pretty much anything else I bring home ends up on the floor in my room with the understanding that it will be put into its proper place at a late date (but this date never comes).

It generally takes most of the day for me to fully “wake up.” There are things that bump me up to the next level of consciousness: the cumulative effects of each dose of my meds, socializing which gets my mind going, and generally going through my daily tasks. Sometimes I’ll be in the mood to start cleaning but by then it’s 2am and everyone else in the house is trying to sleep so I must be quiet. When I’ve finally had enough of the mess and start cleaning during daylight hours, the required motions of repeatedly bending over and lifting quickly do a number on me. It’s a similar feeling to shoveling snow.

Human beings naturally avoid activities that cause pain anyway, but surviving decades of discomfort will condition you even further. It’s not long after I start cleaning that the feelings of soreness, fatigue, shortness of breath, and sweating kick in. I’ve managed to recondition myself to get through many other of life’s tasks, but keeping my room clean remains a constant challenge.

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Things On My Mind – 3/5/2018

I’ve felt like shit for over a month now. As I walk through the living room and kitchen to driveway to go somewhere, my parents sometimes greet me or ask a question but I can’t answer due to the fatigue. I feel like I’m out of breath and can’t get enough oxygen. I suspect this is due to 3 factors: the fact that I’m more active than ever before, nagging sleep apnea symptoms disrupting my sleep, and tolerance to Adderall building up once again. I’ve since I can’t always get things done at home (as explained in my “Environment” article), I’ve taken my ME/CFS books to the library to consider my options.

Regarding those 3 factors:

The biggest problem for me with regard to being active in hobbies and business is that the more I do, the more I have to do and the more I want to do. For example, despite feeling shitty lately I’ve increased my eBay earnings due to some new strategies and effort I’ve put into it. Buyers don’t wait for me to catch up on sleep, when they click that “Buy It Now” button I need to get that stuff packaged and shipped out. In addition to my personal eBay sales, I’m also helping a local music store sell some of their stuff online which is even more complicated. I need to always keep my eyes on things to respond to questions very quickly and communicate with the store owner to make a deal. I then need to get my ass to the music store, package up that big guitar, work with one of the guys that works there to print out a UPS label for me, and then I go drop it off. For my personal eBay sales I can wait a day or two if I really need to, but when guitars in the 4-6 figures are being purchased from a legitimate 35-year business I need to get the job regardless of how sick I am or if I’m off my meds.

As far as sleep apnea goes, I was disappointed to see symptoms return after losing weight. At my heaviest I was nearly 240lbs. I started tracking my foods last year to drop weight after struggling with a CPAP machine. When I got my weight down to about 205lbs, I suddenly (literally overnight) stopped waking up and slept through the entire night. I thought that was it – I’d heard that weight loss was a “cure” for sleep apnea. Unfortunately, symptoms returned. I spent sometime reading about sleep apnea and its causes and learned that while weight loss will improve symptoms, it doesn’t necessarily cure them. I’ve been about 190lbs for a while now and just started the process of tracking my foods again. I’ve read that even 10lbs can make a difference when it comes to sleep apnea symptoms (and blood pressure, too) so I’m hoping that will do the trick. I don’t understand why I slept fine for weeks at 205lbs before symptoms returned, though. I need to read more about sleep apnea if things don’t improve because I really don’t want to do another sleep study and bother with a CPAP again. Some people are cured by strapping something to their back which forces them to sleep on their side (I already sleep on my side), some cured their symptoms with weight loss, some find relief with a CPAP, and others are cured via surgery.

Regarding the last one, Adderall tolerance, this one’s tough. When the brain has become tolerant to stimulants like amphetamines and you spend some time without the drug, the next time you resume using, tolerance will occur much more rapidly. It’s difficult to tell how often I can use Adderall and get away with it. I’ve been generally following a 5-day schedule for a few months now (Adderall on the weekdays, rest up on the weekends) and this might be pushing it unfortunately. Like I said earlier, the more I do the more I want/need to do so it’s very difficult to take a break and say “I’ve got all these things I want to do and people to talk to, but instead I’m going to lay in bed all day without being able to think.” It needs to be done an I’m ok with taking a couple days off per week when I have no plans, but there are times where I have to decide if I want to risk a 6-day week to participate in something. Last year I spent over a month researching and then trying a peptide called BPC-157 (I should write an article on this) which may be able to repair damaged dopamine receptors but I did not notice a significant improvement. This could be due to the fact that those that see improvement are generally former addicts to meth and other amphetamines and no longer use the drug. The only other way to lower tolerance is to spend a significant amount of time away from the drug (months) so if things get too bad I’ll have to spend some time away from Adderall again. After the crash which occurs over the first few days I wind up in a state where I don’t have much energy and can’t think, but I could go through the motions of packaging up my eBay sales and shipping them out. I’d also have to figure out arrangements for the weekly open mic livestream I’m responsible for running.

There’s my current situation. The meds I’m on got me to where I am now which is great and more than anything I ever thought was possible… but I’ll need to discover some new things if I’m going to get to where I want to be.

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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.

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:

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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.

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.