Extremely Severe ME/CFS—A Personal Account

Abstract

A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely severe ME/CFS. Illness progression, medical history, description of various aspects of extremely severe ME/CFS and various essays on specific experiences are included.

1. Biography

Whitney Dafoe (see Figure 1) studied photography at Bennington College and The San Francisco Art Institute. His award-winning work in photography and film has been published and exhibited worldwide. Whitney first got ME/CFS at age 21, which made his education and photographic pursuits much more challenging and his ultimate goal of being a war and documentary photographer impossible. His condition worsened in 2009, going from mild to moderate ME/CFS. It then quickly deteriorated into severe ME/CFS in 2012. In 2014, it worsened again into extremely severe ME/CFS. In April of 2020, Whitney saw an improvement, back to severe ME/CFS, from the drug Abilify and, although still bedridden, is able to write for a limited time most days.

2. Introduction to ME/CFS

I have been struggling with health problems since 2004, when I was 21. Every time I traveled, my health seemed to plummet. However, I have always been inspired and dedicated and never thought I’d wind up where I am now. Therefore, I kept going, kept pushing myself to do everything I wanted to do. A trip to India in 2006 (See Figure 2) made the illness much worse. From 2009–2012, ME/CFS progressed to a moderate state. I started a wedding photography business in 2009 when I realized I could no longer hold a full-time job, thinking that it was a blessing in disguise because, once I got my health back, I would be making money doing something I loved. After a year, things were looking really good business wise, but it took me longer and longer to recover from the intense physical requirements of shooting a wedding. In 2010, when I couldn’t recover in a week in order to shoot the next wedding, I decided I had to give it up and move back in with my parents, both heartbreaking decisions because of what they represented. For the next 2 years, I was bedridden much of the time, with my health and mobility slowly decreasing. In 2012 I was forced to rest in bed most of the day, saving up energy for little bits of projects, or working on some photographs for a half hour, or an hour on a good day.

After seeing countless doctors and specialists in every area of medicine I could find for 8 years, since I was 21, having blood drawn over and over again and literally hundreds of tests done, I was finally diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis by Dr. Andy Kogelnik at the Open Medicine Institute in Mountain View CA. As you know, there is no cure.

The Symptoms of Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis (ME), vary from patient to patient [1]. The most fundamental symptom is debilitating fatigue that worsens after physical or mental exertion. However, fatigue is much too mild a word. I like to compare the state I was in in 2012 to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day—hung over, not having slept or eaten in 3 days—is close, but still better than many ME/CFS patients feel every day. “Total body shut down” would be a better phrase, because you are at a point where your body physically does not have the energy to keep going.

3. From Moderate to Severe

ME/CFS began for me in 2004, when I was 21 [2]. I was in a mild state for 5 years, with my main symptom being lightheadedness that worsened after cardiovascular exercise or came back after periods of remission after cardiovascular exercise.

While in India, I experienced a strange cold that never really took hold, but remained at about 20% for 2 weeks. This had never happened to me before. About 4 months later, one night I suddenly started feeling queasy and nauseous and had mild diarrhea once. This was followed by immediate exhaustion. I suddenly, overnight, developed severe ME/CFS. I slowly recovered from the symptoms to about 60% health, and then would get mild diarrhea (once) again and it would come back immediately, in full swing, and I would be in bed, unable to eat anything but liquified white rice soup.

After battling this for about 3 months, I finally wound up with pneumonia in a hospital in Calcutta, India and decided I had to come home. Upon arriving home, I immediately started getting better, and the ups and downs of getting worse-then-better stopped. I slowly recovered to about 80% of my former health. I still could not do cardiovascular exercise, or I would risk the lightheadedness coming back.

I then learned of a doctor from a close friend of mine, who he claimed was a sort of miracle worker and had often cured undiagnosed illnesses in people before. In hopes of regaining my full health, I flew to Guatemala to see this Doctor. After being there for about a month, the same thing that happened in India happened again. After a meal, I got mild diarrhea, my stomach shut down, and I lost all energy. I stayed there in this condition for about a week, barely hanging on, until I decided to return home. Again, upon returning home, I immediately got better. However, I did not return to the same state I was in after returning from India. I was a bit worse. I was weaker and my stomach was less functional.

In 2009, while working for Environment California, fundraising on the streets, there was an extremely cold spell (for the Bay Area). Every other worker wound up getting a cold. I didn’t. However, sometime after that, the same symptoms of the strange 20% cold I got in India came back and my health quickly started slipping back into the state I was in in India and Guatemala, though I did not get as severely ill. My health stopped deteriorating when it was about half as severe as the worst I was in India and Guatemala. At this point, I had moderate ME/CFS symptoms. I was mostly housebound but could walk a short distance to get food and do grocery shopping, cook for myself and take care of myself, although I had to spend large portions of the day resting in my room. This state continued for about 2.5 years, slowly getting worse until it was so difficult to take care of myself that I decided to move in with my parents, hoping that if I lightened my required work load and stayed under my energy limits, my condition might improve. It actually did, a little bit (see Appendix A.2).

Then, I took Rituxan (Rituximab) and this wound up permanently changing the way the illness worked in my body [3,4]. ME/CFS patients who survive have to develop acute awareness of their own bodies to monitor their energy limits and how food and various stimul affect them. Before Rituxan, if I went over my energy limits, I experienced a crash that made me exhausted for the rest of the day or multiple days, but I slowly recovered from it, close to, but not quite equal to, where I was before (as I remained slightly worse).

After Rituxan, when I went over my energy limits, I experienced a much more extreme crash. Instead of a steep curve down and slowly back up, it was like going off a cliff and I did not recover: my symptoms permanently worsened. The crash was a downward line that then just leveled off and did not curve back up. It is very difficult to never go over your energy limits, especially when every time you go over them, you get permanently worse and have to relearn your new limit, which often requires going over it once to find where it is. For me, at that point, it meant getting permanently worse, so I very quickly got much, much worse, I developed pain in the muscles in the back of my legs when standing for short periods of time or walking short distances, then I lost my ability to speak, then I could only text a few words and had to use an app with pre-programmed text messages to ask for food so I only had to touch the phone a few times to send a text. I later taught my parents a routine for my food that I stuck to so that I did not have to ask for a specific thing. My diet was an ongoing, constant rotation through the same meals at the same times. This saved me from having to text.

I continued to get worse. For many months, I walked out into the yard, laid down on a lawn chair and listened to music with headphones for several hours before walking back into my room. This, and 2–3 twenty-foot trips to the kitchen, were the most I could walk per day. I later got a wheelchair, so I didn’t have to walk to get to the kitchen (see Appendix A.8).

I continued to get worse.

One night, something traumatic happened that led to me texting more than I was capable of, due to the emotions evoked by the event. This was the end of being able to walk outside or use the wheelchair to get into the kitchen. After this one event that put me over my energy limit, I was bedridden and have been ever since (see Appendix A.5).

4. From Severe to Extremely Severe

In my Severe state, I was bedridden and became sensitive to human contact. I could not tolerate people being in my room for more than short periods of time [5]. This got worse, and soon trips into my room to bring me food and basic necessities became too much. Before I could get my caretakers to successfully limit their trips in and out of my room, they came in and out too many times once and I crashed and got worse [6]. This was on Christmas Eve. I remember lying in bed on Christmas Day, not knowing how I was going to get help or food because I couldn’t tolerate people coming in my room at all anymore (the crash made me permanently worse). I just laid in bed, kind of panicked, trying to think of a solution. I eventually came up with the idea of wearing headphones playing music while they came in. This worked! It eventually morphed into earmuffs with earphones (small earbuds) inside playing white noise very softly, the combination of which did a great job blocking outside noise. From that moment on, I didn’t have anyone in my room without earphones and earmuffs. Only when I discovered Ativan and Abilify [7] in the last few months of 2020 and improved was I able to be around people without earmuffs and actually listen to them speak, but only with Ativan or when my body naturally releases adrenaline to enable me to get up to have a bowel movement in the bathroom (a 6-foot walk). I will explain this natural adrenaline release later in this article.

I continued to slowly get worse, mostly because of the fact that it was impossible to never exceed my very low energy limits. The world is not completely predictable. Sometimes, I would think for days about how to communicate something I needed or something my caretakers were (unintentionally) doing that was hurting me in a way that they would understand. I would try to think of every possible way they could interpret the signals I planned to lay out for them, and every possible reaction they could have. Then, I would try it and they would often react in the one way I hadn’t thought of, and I would have to have them come in over and over, trying to communicate what I needed in different ways. Each trip into my room hurt me and made me worse. I often used paper towels folded into arrow shapes pointing at things, but there was a lot of room for interpretation. It was extremely stressful and devastating to try so hard to stay below my limits and then have these unexpected, uncontrollable things happen that forced me beyond my limits, when I knew I would be getting worse.

My Stomach Functionality Declining

In 2011, my stomach was in a steady condition; in fact, it was slowly getting better after my trip to Guatemala and continued to get a bit better when I moved in with my parents, although it was still at maybe 60% of my healthy stomach functionality. Then, it suddenly collapsed and got much worse. I think this happened because of a combination of the illness getting worse and because of one single dietary change I made. In order to sleep, I had to eat right before bed, and it had to contain protein. For years, I ate yogurt right before going to sleep and it worked great. However, many ME/CFS patients talked about dairy intolerance and that was the one thing I had never cut out of my diet to see if it made me feel better. Out of desperation, I tried eating turkey patties before bed instead of yogurt. About 3 weeks later, I woke up one morning and my stomach still felt full from the turkey patties I ate the night before. This was the beginning of my stomach no longer functioning. [8,9,10,11]

After this, I slowly could eat less and less, despite being very, very careful about never eating too much and eating the things that were easiest to digest. Interestingly, my stomach wound up with a very similar pattern to my energy limits. It’s as if my stomach had PEM. My stomach had reduced capacity and reduced digesting ability. If I ever ate too much, it would be incredibly uncomfortable, and afterward my stomach’s functional limit would go down permanently, so I had to be incredibly careful. I would sometimes take 1/4 sized bites when I got towards feeling full, because one bite too much could be devastating.

It was a horrible, horrible experience, slowly being able to eat less and less. I was slowly starving. It got to the point where I could only eat yogurt and apple juice and I drenched the yogurt in maple syrup for extra calories. I discovered my stomach worked better while asleep, so I extended my sleeping time and would wake up every hour or two and eat another yogurt cup with maple syrup. Then, I’d go back to sleep. At best, doing this, I could eat about 3 cups per day. Still not enough calories. Or nutrients. But it got worse, down to one cup split between sleep. Then, no yogurt at all. I could only handle amino acid pills which I opened and dumped in my mouth. Just a few capsules filled me up. A healthy person would feel nothing from such a tiny bit of amino acid. I also took tiny sips of straight maple syrup for sugar, which helped my brain continue to function. Then, it continued to get worse, and I could only take a few tiny sips of maple syrup spaced throughout the day, just to give my brain a little fuel.

Then, nothing at all. I was extremely weak and lost a huge amount of weight. I weighed 115 lbs (the same as after India) (see Figure 3). I remember being desperate but not being able to communicate. At this point, one way I was able to communicate was by using small index cards with pre-written phrases on them—generic phrases that I could use for anything, like “more/less” “please put it here”, and some specific ones as well. I was dizzy and extremely weak from starvation, and all I managed to do was put out a pre-written card on my pillow that said “Nd Hlp”. My mother, Janet Dafoe, found an in home PICC line service and they came and installed a PICC line with IV nutrition just before things started to really fall apart [12] (see Figure 4). From that point on, I have not been able to eat even a tiny crumb of food or drink a drop of water.

5. Having Extremely Severe ME/CFS

I fell from Severe to Extremely Severe because I passed my energy limits one day too many in a row. I had gone just over my limit multiple days in a row trying to figure out new tools and new routines to help my stomach, which was still getting worse and more uncomfortable. I felt strongly that I needed to have at least a week of calm days, but the next day, the film crew for Jen Brea’s film “Unrest” was scheduled to come. I pushed myself to let them film me despite what my body was telling me I needed. This day was one too many, and afterwards I started going downhill fast, with no bottom in sight.

When I finally leveled out, I could no longer write cards to communicate, or put out pre-written cards. I couldn’t communicate in any way. The only thing I figured out I was able to do was fold a paper towel into an arrow shape to point to something, and this only worked because a paper towel was not a tool for communication; I was re-purposing it. All communication tools were too much for me to handle.

These years are very difficult to describe in detail for multiple reasons. When I became housebound, I, at one point, realized that my thoughts were rather negative, and I realized that if I could put a negative tint on everything, I could put a positive tint on everything too. I began practicing and training my mind to think more positively. It was not easy and took practice, but this eventually became integrated into how I saw and thought about things. It was crucial for what I wound up going through (see Appendix A.4).

When I was at my worst in this two-year period, from the filming of “Unrest” until I discovered Ativan in January of 2016, I tried not to think about how bad things were; I really kept my mind focused. Thinking about my reality was extremely distressing and didn’t help anything, because it was out of my control.

This was also my least conscious period of time in the illness. I think, in time, science will show that ME/CFS patients are in a kind of hibernation state and are literally less alive. I’m confident there was less activity in my brain during this period and still is to this day compared to my healthy brain [13].

The brain is complex. When you lose a part of it, do you know it’s missing? In a way you do, but, similar to state-dependent memory, when my brain was so dysfunctional I don’t think I fully realized it.

I also don’t remember that time very well because it was so traumatizing that I blocked a lot of it out and just pushed forward, so there are multiple factors at play making that part of my illness a bit hazy.

Before describing this period of my illness, I should explain that, at this point—post Rituxan—I had developed a new kind of crash. A mental crash. When most patients refer to crashing, they are talking about what I call a body crash. A body crash is mental and physical exhaustion and worsening of all or most symptoms after going over one’s energy limits, followed by a gentle slope back up, but usually not back all the way to where the patient was before: the crash makes the patient permanently worse. A mental crash is very different. It can happen from thinking too much, from too much stimulation like noise or light. What was happening is that I got so severe that my energy limit extended into my brain. Anything that caused me to think more than my mental limit permitted caused a mental crash. It got so severe that certain subjects were too much for me to think about, and I had to try to control what my mind thought about. You know the saying that goes “Don’t think of a pink elephant”. It is very difficult not to think about something, but I had to learn to. I was in a nightmarish situation where my mind started playing tricks on me, flashing subjects I could not tolerate thinking about into my mind at the worst times and causing mental crashes. I was completely lost in a corner of my mind trying to keep my brain activity to a minimum. It was horrific.

The symptoms of this type of mental crash were usually a hot flush starting in the back of my head and moving down through my whole body, followed by an adrenaline release that temporarily made me a little better, but was later followed by my mind getting much worse. After a mental crash, I could not think at all. I was stuck in a thoughtless, feelingless void that you couldn’t imagine without experiencing it. It’s like being alive but dead at the same time. Alive only to bear witness to the absence of life in your mind and body. This would last for the entire rest of the day. One crash and I lost the only thing I had left—daydreaming of other things, other places, and creative ideas.

Because of the effect crashing had on my life, I had to put a tremendous effort into keeping to my routine as best as possible so I wouldn’t overdo it and crash and get worse. As I said, during this time, my brain was extremely sensitive to crashing from the tiniest extra interaction with caregivers or even thinking about the wrong thing, or from thinking about something for too long. I put all my focus on being perfect and then, if nothing went wrong at night when my caregivers were gone for a long period of time, all night, I could think a little bit. I remember after they left for the night, I had a little adrenaline to get fixed on my pillow and get my blankets comfortable and then it would very quickly wear off and I had to hold still. It was often a battle just to get into a position I could stay in comfortably before the adrenaline wore off, and sometimes I crashed just adjusting my pillow too much. Sometimes, I would force myself to stop before getting into a comfortable position, and then I would wind up in sometimes significant pain from this, but would try to ignore it because if I moved even one muscle, I would crash and wouldn’t be able to think. If I pulled it off, and didn’t crash, it was the best part of the day. I let my mind wander. I usually thought about making things. I have a whole business plan for multiple restaurants, buying and fixing this local natural food store, and lots more. I also thought about art projects in depth, of course. I lived for that time of daydreaming at night and somehow made a sort of life out of it.

It’s also important to note that I hadn’t been sick for nearly as long then as I have now. I had lots of hope for a recovery in the near future. I thought my father, Ronald Davis, PhD, Professor of Biochemistry and of Genetics and Director of the Stanford Genome Technology Center and now the ME/CFS Collaborative Research Center at Stanford University, would figure it out quickly. It turns out this illness is more complicated than I imagined at the time, but that hope helped carry me onward (see Appendix A.7).

During the day, it was also very difficult for me to move other than unconscious movements like adjusting in bed or scratching an itch. If I thought about any movement too much, it became extremely difficult to do because anything intentional was difficult or impossible. I had to come up with ways of “tricking” my mind into releasing adrenaline to allow me to do things like pick up the electric shiatsu massager I used on my stomach to help with the symptoms of my severe gastroparesis. I broke the movement into steps. I used various methods over time. One was to visualize the movement I was going to make over and over until suddenly my mind released the necessary adrenaline and I could tell that I could do it safely, and then I could pick it up with no problem but had to follow my pre-visualized movement. Then, I did the same for putting it on my stomach and the same for pushing the on button, then moving it to a different spot on my stomach. There were actually more steps than this in order for me to move enough to massage my stomach. It took painstakingly long hours to accomplish simple tasks.

I also became extremely sensitive to, mostly visual but also some audio, stimuli [14]. I couldn’t tolerate bright colors and had to remove everything with bright colors from my room. Everything needed to be neutral colors like white, black, brown or shades of gray. My caregivers had to wear all plain black clothing because I couldn’t tolerate any colors or patterns on them. I also became sensitive to text like logos or labels on things because it is impossible not to read text that you see; it is something we do instinctually at this age. Reading required more mental energy than I had and caused a mental crash. Due to crashing from the text I could read in my room, I wound up becoming sensitive to text I couldn’t read as well. Just knowing it was there was extremely stressful. My caregivers had to slowly and very painstakingly (often with direction from me trying to tell them where the text was, which always hurt me terribly) cover all text with black electrical tape. It remains to this day. I was also sensitive to certain sounds, especially the human voice, and during one period, any noise at all.

When I say that I became extremely sensitive to stimulation, or when you read this about severe ME/CFS, it’s not always sensitivity to the stimuli itself. The stimuli, whether it is a sound, a sight, smell, or touch, could connect my mind to something and it was this connection that often pushed my mind over its limit. The sound of people talking, for example, was too much human connection for me to tolerate. Interestingly, it was much easier to tolerate hearing people I didn’t know, like neighbors, talking. This is because it caused much less thought, because I didn’t know the people. When someone I knew spoke, their whole personality and my memories of them, etc., were forced on my mind and this was much more thought-provoking then an unknown voice.

Sounds or other stimuli that had no mental link to anything could also be too much, simply because they are something for the brain to process. This is why I wear earmuffs and earphones playing white noise, along with a folded towel over my eyes, when someone comes into my room (see Figure 5). I need to isolate myself from the human presence and, in general, I need to isolate myself from the world. This is also why you see severe ME/CFS patients wear eye masks, baseball hats and other apparel or devices to help isolate themselves.

I also suffered from something I call “crash memory”. If I crash or get hurt from something, my mind gets what I think is a form of physically induced PTSD caused by my stress or fight/flight response being turned up as high as they could go. When I crashed from something, I developed a stress response to it and became sensitized to it, so I had to be very careful not to crash from the few things that I was able to do or think about. These “crash memories” slowly built up over time. One was getting really sensitive to noise and doing anything at the same time as hearing noise. I couldn’t turn on my stomach massager while various noises were happening. The heater air noise, a train or car going by, the click of my in-room heater turning on. I had to wait a certain amount of time after any noise before I could turn on the massager and, if I ignored it, I would crash. I slowly built up more and more sensitivity to noises and it took me forever to massage my stomach or anything else because I had to do so much waiting for gaps in the noises. If I just “did it anyways”, it would really hurt my brain and I would be in the worst brain fog of all, which created stress and compounded the whole thing. The Klonapin and Ativan I later took helped me reset these Crash Memories, so they didn’t build up. I’m now able to crash from something and let it go and do it again (with the same energy limitations as before, but no added stress or limitations).

When an ME/CFS patient becomes so severe that they are no longer able to communicate, they often start displaying what appears to be emotions like anger or rage [15]. This is a very unfortunate misunderstanding that needs to be clarified for doctors. When I lost the ability to communicate in any way, my caregivers didn’t somehow develop telepathic powers. They became out of sync and out of touch with my condition and what was happening in my life. They didn’t know when they did something that hurt me, and I had no way to tell them so they would stop doing it or do it in a different way. I was forced to resort to doing things that would connect what they did to a bad experience for them so they would stop doing it, not because they thought it was bad for me, but because they knew what would happen if they did it again. This was unfortunate, but it was the only way to survive. Babies are in a similar situation, where they have needs that don’t get met because they can’t communicate. They do similar things to what I wound up having to do. I often had to display anger and throw things that would break or otherwise make a mess that was tiring for my caregivers to clean up. I most often would dump a jar of water that was kept by my bed onto the floor, which they then had to soak up so mold wouldn’t grow. They sadly thought, at the time, that the illness was making me emotionally unstable and angry. However, I was never actually angry and always felt terrible about forcing them to clean things up, but it was the only thing I could do to change their behavior so that they stopped hurting me. This is important for doctors and caregivers to know, for two reasons—so that caregivers do not take this behavior personally and so that patients are not improperly diagnosed with mental illness by doctors. It is no more a mental illness than a baby’s cry for help (see Appendix A.6).

One thing I’ve thought about is that, despite my caregivers’ entirely good intentions and tremendous effort, my actual experience during this period was one of rather extreme abuse. It’s still true, though to a lesser extent. I got worse almost entirely because of interactions with my caregivers. This isn’t because of anything intentional on their part, but due to my sensitivity to human interaction. If I could have somehow gotten what I needed without people ever coming in my room, I would never have become so severe. I must emphasize that this was despite their good intentions, effort and sacrifices, which I have always acknowledged and been grateful for.

I don’t think I ever worried that my brain was permanently damaged. I’m not sure why. I’ve always been very in touch with my body and most of my conceptual intuitions about the illness have been proven correct by Ronald Davis (molecularly). I do still worry that brain crashes (as opposed to body crashes from overexertion, which last longer and are more of a gentle curve, not a cliff) cause brain damage, but I think the brain is resilient and can rewire itself. I try not to think about it.

My personal theory of a mental crash is as follows. When an ME/CFS patient gets severe enough, the energy limit invades the brain because use of the brain starts exceeding the energy limit. When the brain exceeds this limit, it runs out of oxygen or some other vital element, and the body responds by inducing an emergency release of adrenaline (this is the hot flush I experience) and this adrenaline increases my heart rate, which pumps more blood to my brain to avoid sudden brain death. I don’t know what this essential element is, but I feel fairly confident this is an accurate laymen’s description of what is happening. It’s an automatic emergency brain-saving reaction.

Severe ME/CFS List in Brief—Summarizing My Quality of Life

• I haven’t left my room for 7 years, except when I have to go to the hospital to change my J-tube feeding tube out of medical necessity. I am only able to do this without dying by being sedated with Ativan the entire time, as well as Fentanyl and Versed during the procedure;
• I haven’t been touched by another human being without it hurting me in 7 years;
• I haven’t been able to speak for 7 years. I haven’t had a conversation with another human being in 8 years;
• I haven’t eaten a crumb of food or felt a drop of water in my mouth in 6 years. I’m alive because of nutrients being pumped into my body with machines and tubes;
• I haven’t taken a shower in 7 years. I clean the most necessary parts of myself with baby wipes every day and it absolutely exhausts me. I can’t handle having someone else clean me;
• I haven’t cut my own toenails in 7 years;
• I haven’t been able to hold or even touch my camera in 7 years (photography is my passion and my life);
• I haven’t peed standing up in 9 years. I haven’t walked to the bathroom to pee in 7 years. I pee in a urinal in bed;
• I haven’t made love to a woman in 9 years. I haven’t been sexual in any way in 5 years;
• I haven’t brushed my teeth in 6 years. It hurts my stomach, making it worse and putting my ability to tolerate the feeding tube at risk, which puts my life at risk;
• I haven’t seen a dentist in 9 years;
• I haven’t been able to tolerate the sound of another person’s voice without being sedated in 7 years. I wear heavy-duty earmuffs whenever my caregivers are in my room for the bare minimum of time. They can’t talk and have to be as quiet and gentle as possible;
• I haven’t felt like a human being in 7 years. All humanity has been taken from me by ME/CFS. I live only to continue living. There is no love, joy, passion or creation, only endless, numbered days; (See Appendix A.1)
• I fight to survive for all those living and dying in silence and darkness (see Appendix A.3).

6. Slight Improvement—Ativan and Abilify

Discovering Ativan saved me from living on the brink. After taking it for the first time, it had some sort of reset effect on my system, and all my symptoms improved permanently in addition to the temporary benefit of the drug. I had been on Total Parenteral Nutrition (TPN) through a PICC line for 1.5 years, and this is the maximum time a person can be on this type of nutrition. Some things just can’t be given through your veins. It bypasses the entire GI system, and risks liver damage. I should have been put on Total Enteral Tube Nutrition with a jejunostomy tube [16], instead of TPN and a PICC line, from the start, but my family, my doctors and I were all scared of what a trip to the hospital would do to me and we didn’t realize how much Ativan would help me. I would probably be much healthier today if I had a J tube installed then, because I would have discovered Ativan sooner, and TPN through a PICC line in your veins causes the GI tract to deteriorate and healthy bacteria to die off.

I took Ativan for the first time to try to make my trip to the hospital to have the J tube inserted tolerable, or at least less harmful (see Figure 6). It wound up being a game-changer for me. In addition to somehow resetting my system and permanently improving all of my symptoms, I now had a way to periodically communicate (Ativan can’t be taken all the time or you habituate to it, so I took it once every week or two). This meant that I no longer had to figure out how to communicate problems or new needs that arose; I just had to hold out and tolerate them until I could take Ativan.

Ativan mainly reduced my sensitivity so that I was able to tolerate being in the presence of people. I still could not speak and certainly could not get out of bed or do anything extra physically, but I figured out that I could gesture to communicate. This was painfully slow and took an enormous amount of energy. In time, I learned that I could also do a limited amount of writing out words in the air with my finger or onto my blanket (I still could not write on paper). I used the combination of gesturing for most things and filling in gaps that I couldn’t successfully gesture by writing them in the air. This was still hard on me, though, so I would often reduce the number of letters I had to draw out by playing a sort of “hang man”. I would write a few essential letters of a word and draw blank lines with my finger in between and try to use gesturing to help people figure out the word by guessing the other letters. Or I would do the same with a sentence, with the blank being a word I wasn’t able to get across. It was a relief to be able to finally communicate directly to people, but also traumatic in how difficult and often imprecise it was. It frequently made me feel pretty desperate.

Going to the hospital, especially for the first time, was incredible. I had no idea Ativan was going to have such a profound effect on me. I was preparing to get way worse and have a terrible time and crash horribly. Instead, I improved and was calm and got to enjoy things like seeing the sky for the first time in 6 years: all the sights of the real world out the window of the ambulance, all the healthy people working at the hospital leading healthy (or at least much healthier) lives with careers and loved ones and goals and things they were looking forward to, etc., and, a few times, seeing women my age and feeling attracted to them, and more. It was all amazing and continues to be, though it’s also exhausting and a big disruption to my routine, so it’s a mixed bag, especially coming back home and seeing the door to the outside world shut behind me. This is very difficult emotionally. I also let a lot more of myself out while on Ativan because I’m able to, and when it wears off, I have to pull it back in again and suppress myself again. It usually takes a couple days of emotional turmoil to adjust.

In the fall of 2019, I started taking Abilify at a low dose. It did nothing for the first few months because I was adding multiple medications and supplements, so I tapered up very slowly, much slower than most people when they take it now. I think I spent 6 months going from 0.25 mg to 2 mg (February 2020). After being at 2 mg for about a month, I started noticing an effect. It wasn’t the same as Ativan. I didn’t suddenly feel it like Ativan, which had an instantaneous, noticeable, drug-like effect. Abilify seemed to be changing something at a deeper level. I had more energy and could slowly tolerate more things that used to cause me stress. For the last 6–7 months, I have continued to improve, tolerating more and more things that used to make me crash from stress and over-stimulation. I can’t get out of the bed, but I can move around in bed much more than before. I can even work on some hobbies in bed on most days for some time. When I take Ativan now, I can actually listen to people talk to me, so instead of pantomiming both directions, I can listen and then pantomime back. They can say what they think I mean, and I can nod if they’ve got it. This makes it much faster but still painfully imprecise and slow for me to communicate anything to them.

Soon after my stomach completely shut down and was unable to tolerate even a drop of water, I discovered that ice helped it function better. When I started getting Total Enteral Formula with the J tube, I kept ice on my stomach for basically all of my waking hours. After being on Abilify for 6 months, I discovered through an act of brave experimentation that I could tolerate the food pump with no ice. This was a huge breakthrough, because it allowed me to move much more in bed and avoid the constant replacement of two-gallon-sized ziplock bags of ice on my entire stomach from ribs to waistline. I’m now able to get up on my knees in bed for a moment to move or reach things. I haven’t tried standing up in bed.

For my entire time with severe ME/CFS, I’ve gotten a natural adrenaline boost when I have a bowel movement that improves my condition, and, with the exception of a 6-month period when I used a commode, gives me enough energy to get out of bed and walk the 6 feet to the bathroom to go in there on the real toilet [17]. Which is, of course, a good thing for my sense of humanity and autonomy, and it’s just easier for everyone. Since Abilify has started to improve my heath, I’ve been able to harness this adrenaline to communicate after having a BM in the bathroom. I can’t interact with people for a long time, but long enough to communicate some basic things. It’s been enough that I haven’t needed to take Ativan anymore because I just wait until my next BM to communicate new needs or problems. I’ve recently added washing my feet, privates, head and face in the shower to having a BM. After the BM, I stand in the shower for a very short period and wash my feet and privates. Then, I lie down on the ground with my head sticking into the shower and my caregiver washes my head and I quickly wash my face. I don’t totally understand how my body produces adrenaline to go to the bathroom or why it isn’t able to for other things like communication or cleaning myself, but it has something to do with hardwired necessity. There is something hardwired to having a bowel movement that must push the body to get up and move somewhere else. I believe it is something we evolved to have, to help early humans move away from their sleeping place to go to the bathroom because this improved sanitation and reduced illness [18].

7. Important Notes

A doctor recently asked me to describe why I am unable to talk and the process behind that. The answer to this question ties into a core process of ME/CFS that is important for the world to understand because of its significance and because of how much suffering it causes patients. I haven’t spoken in 8 years, but I could talk right now if I chose to. The keyword here is choose. ME/CFS is not generally defined by inability, but by consequences. Everything is about Post-Exertional Malaise, mild or severe [19]. I could get out of bed and walk out the door and run right now if I chose to. I’m capable of it. The question is not what I am capable of, the question is what will happen to me afterwards (or in severe cases, might leak into the very act because it would take very little running before the reaction of severe PEM started and I might still be running when it hit, causing me to collapse or possibly die, but not from the immediate consequences of the action, but PEM). ME/CFS patients very quickly learn that their actions have consequences that occur after the fact. Patients have to learn to read and listen to their bodies.

I have learned to pre-visualize an action before doing it. When I pre-visualize performing the action, I can feel what the consequences of performing that action will be, and whether it will hurt me or not. I have incorporated this pre-visualization into every single action, big and small, and it is now how I function without having to consciously think about it. I don’t speak because, when I do this split-second pre-visualization I feel that it will hurt me.

There are some things I don’t use entirely this technique for, though. Some things feel like they might be OK, but I rely on my prior memories of doing them and what the consequences were to steer me in the right direction. One time, in 2012, when I first became bedridden, I got up out of bed to move something that had fallen over. It wound up causing severe PEM that left me exhausted and brain-fogged for days. Right now, when I pre-visualize getting out of bed and walking a few steps to get something, it feels like I maybe could, but I am scared to do it because of what happened in 2012. I can hear psychologists everywhere screaming “deconditioning!” That’s not what is happening here. It is simply intelligent learning. When I am able to get out of bed and walk a few steps to pick up something, it will be obvious to me. Getting better is a slow process with ME/CFS because of how careful patients need to be about overdoing it. When getting better, the energy limit is suddenly in unknown territory. Patients must very slowly do new things only when they feel very safe doing so. It is wiser to get better staying a bit under your absolute limits than to try to do as much as possible, and wind up making a mistake, going over the limit and then getting worse and ruining a possible upward spiral toward better health.

7.1. Routines

This brings me to another important part of living with ME/CFS—developing a routine. It is difficult, especially for people new to ME/CFS, to pre-visualize every little thing. It’s likely that I am better at this than other people because I am good at spatial thinking—I am a visual artist. It is difficult to always know when you will go over your limits by performing a certain action. Patients soon learn what hurts them and what is OK, and to make life easier, instead of trying to figure these limits out every hour of every day, which leads to making mistakes, patients develop routines. These routines are sets of actions a patient learns that, if performed in a certain way or order, can be done without going over their energy limits. Most people who survive ME/CFS develop routines and stick to them so that they are much less likely to go over their limits. It is a way of living that leads to much better health than constantly guessing or taking chances. It, of course, causes suffering as well because it takes spontaneity out of life. The worse a patient gets, the more every day becomes a chore of endlessly going through the same actions in the same order and in the same way, but if patients don’t develop a routine, they get worse, and lose the ability to do things they were once able to do. Do not make the mistake of diagnosing this as OCD behavior. It is a choice that ME/CFS patients make. The choice is obvious to ME/CFS patients: it is preferable to sacrifice spontaneity in order to be healthier and more active, and think more clearly.

7.2. The Great Beyond

Having Severe ME/CFS is so close to being dead. There’s really no other way to describe the experience I have had. I don’t think it’s something that people who haven’t had severe ME/CFS can likely understand. Looking back at who I was when I had mild and moderate ME/CFS, I’m not sure it’s something that even patients who haven’t been in the extremely severe state can fully understand. I was literally barely alive, and I am confident that, in a short time, science will prove that severe ME/CFS patients are barely alive and that ME/CFS patients, in general, are less alive mentally and physically than healthy people.

I think the only time a healthy person maybe experiences anything like this is shortly before actually dying. In that case, the person is generally in this state for a much shorter period of time and so remains much more connected to who they were, and their former lives. This is the state in which healthy people let go of their former lives and accept death, which is probably one of the reasons that suicide is so common for ME/CFS patients.

When I was severely ill, I lost so much of myself. I was holding on to fragmented memories left imprinted in my mind of who I was, but that person, in reality, didn’t exist anymore. The thought patterns and emotions and worldviews that created the person I was no longer existed. However, I was still technically alive, just enough to be conscious and bear witness to this state of non-existence.

The suffering this causes is so profound. I can only liken it to one of the hell realms described in Tibetan Buddhism. A world full of nothing but pain, loss, agony and constant never-ending challenges in holding on to what little I had left. Every mistake took me deeper into the void of nothingness.

As you know, I have recently gained back some of my mind and body. It feels like coming back from the dead. I’m in a strange state now, where bits and pieces of Whitney have come back to life but most of me has not. I’m not able to get out of bed, eat or drink water or go out and feel the world again—feel that feeling that is being alive.

I have, so far, just been riding this wave of improvement and the new-found abilities I have, like being able to write and have some semblance of connection with the world again.

However, the honeymoon phase for these improvements wore off, I started realizing how far I actually am from being Whitney again. I’ve realized that I don’t really know who I am anymore. I know who I used to be, but is that who I am? I guess I’ve realized that it is not.

The experience of being on death’s door for never-ending years has changed me permanently. I’m still not well enough to come anywhere close to fully inhabiting my own mind and body again. I don’t really know who I am. I’m in a sort of limbo right now, stripped of the person I once was and would have become, but not able to take the experiences I’ve had and create a new person out of them. I’m still a ghost, suddenly no longer fully transparent, yet, at the same time, unable to actually exist in physical form.

It’s so confusing.

While my new capabilities have improved my quality of life a small amount, I realize how much I’m still suffering and how much is still missing from my being a human being again. I’ve been so focused on my small improvements that I’ve somewhat lost touch with how far away the world still is. When I think about it now, it’s hard for me to even imagine what it would be like to be fully healthy again, out in the world again, alive again.

I don’t know who I am going to become. One thing I do know is how much the experience of losing everything has taught me. I think ME/CFS is the greatest teacher I’ve ever had. I have hope that when better treatments, and then a cure, are found, I will be a much more conscious, wiser, more realized being. That person waiting to be reborn is an incredible person, and I can’t wait to see that person and be that person and contribute to the world with my whole being (see Appendix A.9).

I think this is one of the most tragic things about the high rate of suicide among ME/CFS patients. These are people who have been through something completely unique to the rest of society and have a truly unique and profound perspective to offer the human race. When an ME/CFS patient kills themselves, so much is lost from the world.

We have seen the other side. We need to stay alive so that we can join the world again and share what is really out there in the great beyond with the rest of humanity. We have an incredible understanding of what life is. How precious and fleeting it is, how little time we have, and more. These are lessons that most people never learn, and we need to teach the rest of humanity how sacred the life they have truly is.