(An exert from a letter to my doctor as we work with a new treatment which is proving effective for CFS)
I have spent much time over the past two decades trying to understand the various forms which energy takes in the human body. One thing that is clear to me is that there are many different things which we refer to as “energy” which are actually quite separate from each-other. It has always been a challenge with this illness to explain to doctors how my “energy” is doing, as these different types of energy can often be doing very different things. Coming to understand the role Cortisol plays in the body has helped me to refine my understanding of these different types of energy lately, and this is giving me some new insight into some of what is going on in my body.
There are two kinds of energy which I am often see acting very differently in my body. One is a passion and mind based energy, possibly adrenaline or something closely tied to it. The other is a much more basic, physically based energy which seems to be some sort of a basic fuel for the running of my cells and muscles, or simply my physical body.
Let me start with the adrenaline based energy. Are you very familiar with ADD? Most people know ADD as a way in which the brain is wired to make it hard to concentrate and focus on things. However, there is a flip side of ADD which can do quite the opposite. In the right situation, the particular way in which the ADD brain is wired allows the person to go into a hiper-focus mode which fills them with unusual amounts of creative energy, allowing them to accomplish things most people can’t in very little time. (I have heard that most real geniuses in science or art have been people with ADD who go into this hyper-focus, superhuman mode when their particular interest is triggered and get unusual amounts of creativity and ability to accomplish things.)
The thing is, if you have ADD, you can’t control when you are sent spinning into this hyper-focus mode. Its like a trigger. When its tripped (generally by your mind coming across something it is passionate about) and you are sent spinning into this mode, your physiology actually changes. The way your brain perceives and processes information and time and the brain’s ability to connect concepts is measurably different once this trigger is tripped in the brain of someone with ADD. And when you’re in that mode, until the trigger resets itself and your brain goes back to normal, you can’t escape being gripped and controlled by the passion and intensity of your interest with (obsession for) the thing that tripped the trigger in the first place. From my own experience as a person whose brain works this way, I know of only two ways to be released from the intense focus, passion and obsession the ADD focus causes. One is to follow the interest to its conclusion, sometimes working for days and nights straight to complete a project, at which point the brain just naturally lets go of the obsession and goes back to normal. The other is to force my brain to reset by shutting my system down in some way, something which I have rarely managed to find any way to do other than taking a double dose of sleeping pills. Sleep usually resets my mind to its normal state, in any case. The problem is that there is often no natural way to sleep when I am in this ADD state, and knocking myself out with drugs is often the only way to get my brain to let my body get the rest it needs.
(One side thing before I go on. Most people with ADD find that it makes them less able to accomplish things in their life. It shuts them down and makes them unable to accomplish and focus. But some of us find the opposite. While it certainly makes it excruciating or even impossible to focus on things which don’t trip that trigger, we have some interests which we are so passionate about that they always trip that trigger. And when we do, our abilities are heightened, so we can accomplish things most people can’t, if only in that field. I don’t know why most people with ADD seem to find that their primary effects are dulling and slowing down, rather than this speeding up. It may be that some people’s ADD is more likely to trip the hyper-focus trigger than others, or it may simply be that most people don’t have things they care enough about in their everyday lives to trip their passion-sensitive ADD triggers and make use of that side of this brain type.)
Here is why all this is relevant to treating my illness:
I think that Chronic Fatigue Syndrome and ADD are a particularly destructive mix of problems to have together.
Most people with the kind of ADD which tends to trip this trigger a lot and really propel them into this extra ability state probably don’t notice one aspect of this brain state which has become quite apparent to me over the years. Being in this state takes (maybe consists of?) a great deal of extra energy, above and beyond what our bodies usually produce or need. When this trigger is tripped, I get hit by a stream of energy which my body produces and pours into my system above and beyond anything it would usually produce in any other situation but one.
Over the years I have come to notice that this ADD brain state produces the same energy, and I suspect, the same brain state, which pours into the body in a sudden and extreme emergency situation. I have been in truly life threatening situations a handful of times in my life and I can say that at those times, I have experienced the same slowing of my perception of time, heightening of my senses, and sudden access to an intense and powerful rush of mental, emotional and physical energy in these emergency situations as I feel when my ADD trigger is tripped. It is the same experience. I assume, then, that the ADD state, like the emergency state, is tied to and fueled by Adrenaline.
I believe that when most people’s bodies produce a rush of Adrenaline in response to some situation, their bodies draw the resources for the production of that extra energy from their general body’s reserves, and probably deplete those a bit so that they need extra rest for a few days after the adrenaline rush has left their system. But most bodies have those reserves to give and can recover, assuming the adrenaline process isn't tripped too often or sustained for too long. But I think that with Chronic Fatigue Syndrome, the body has such low basic reserves and resources to draw from that the consequences of this kind of adrenaline rush (the extra energy it takes to produce it) are much more noticeable and destructive.
That might still be okay if it only happened every once in a while in response to an emergency. I would need more time to recover than most people, but I would still have the sudden burst of energy and altered brain state I needed to deal with an emergency and I would replenish it over time. Except that, having ADD the way that I do, this kind of hyper adrenaline state is triggered far too often. In fact, I think that in me, perhaps because I get so excited and passionate about so many different things in life, if it weren’t for the chronic fatigue syndrome, I would probably live most of my life in some form of this kind of ADD triggered, passionate, hyper adrenaline state. And I think that my default mode, whenever my body begins to righten itself and become strong again and I begin to have any extra energy at all, is to go regularly into this kind of ADD mind-state which requires and produces tons of extra adrenaline energy.
I sometimes think that it is this complication - the mix of ADD and Chronic Fatigue Syndrome together - which is responsible for my never having recovered from this illness in all these years. And if I am right about that, then this same interaction is likely to keep me from recovering now.
I identified this pattern decades ago and have repeatably seen it derail what looked like a promising chance at recovery.
My experience is that there is a second kind of energy which our bodies use, not so much tied to adrenaline, which is much more physically based and much more basic to our existence. This energy runs everything our bodies do, from the involuntary processes like cell division, and keeping our heart beating, to the production of what we actually experience as energy when we play sports or go on a walk or just generally feel good. When we are tired or if we are not in good shape and exercise is miserable, we are depleted of this basic energy. However, even at their most worn out, most people never get so depleted that this reservoir of energy is actually empty. If we did, our bodies would no longer be able to keep our heart beating or our lungs breathing.
It is like we have a tank with different levels. When our energy drops below a certain level, we feel tired. When it drops bellow another level, maybe our body doesn’t have quite enough resources to fuel our immune system at full bore, so we get sick more easily. But if it drops bellow the next level (which for most people it never does), our body actually has to start short changing basic bodily processes or basic organ functions. The nervous system mis-fires, the digestive system can't balance, different organ systems get short changed and can’t do everything they are suppose to be doing. At this point, I think the body actually starts shutting down non-essential resource distribution to protect it from dropping bellow the next level, at which the most vital functions such as heart beating and breathing are threatened. I don’t think most people’s energy reserves ever come close enough to dropping bellow these last few levels for them even to think of things like their heart beating or their breathing as taking energy at all. But its something I am very aware of.
My understanding of Chronic Fatigue Syndrome, is that something in my body has broken down such that my body can no longer effectively turn resources into this basic kind of body energy anymore. I eat good food, get exercise and sunshine, but my body can’t turn these things into energy the way it is suppose to. Maybe only 10% of the resources I put into my body are able to be turned into energy, and that is not enough to keep up with my basic involuntary needs, much less have anything left over to function on. Thus, over time, my tank has become much more drastically depleted than most people ever experience. By now, my levels are so low to begin with that what should be a simple expenditure of energy can push my body into barely being able to function. An hour of shopping and I can suddenly drop bellow a critical level. Not only do I suddenly experience extreme exhaustion as though I have just run a marathon, but I begin to have facial ticks, my feet don’t land where I expect them to, my hands jerk. A stressful horse back ride which pulls even more energy and pushes my reserves even further into the red can cause me to collapse in such a way that I can not stand, speak or (at times) even open my eyes, though I am not unconscious. In these cases, it is as though my body has shut down all non-essential processes to reserve what it needs just to keep me alive. At such times, my heartbeat seems to stutter and it takes concentration to breath.
When my reserves are low enough that I am exhausted and weak most of the time, have trouble with basic thinking and basic nervous system function and a couple hours of activity leaves me unable to function, that ADD trigger state I started out this letter talking about is rarely tripped. That state seems to require a certain amount of passion about whatever subject trips it to take effect, and when I am that worn down, I can’t normally muster that much passion about anything. Of late I have gone months or even years without experiencing that ADD state. However, every time in the past twenty years that I find a treatment which really seems to be building up my basic energy reserves such that I am beginning to lift out of the really critical deficits and have a decent basic foundation of energy again, the frequent tripping of the ADD state has kicked in again. And every time that has happened, I have (within weeks or months) so overdrawn my basic energy reserves that I have emptied out my tank again and I experience a major crash.
This often results in my collapsing and being unable to function for some time, and can take months or years to recover from even enough for me to be able to take care of my basic needs such as being able to make meals for myself every day or drive a car. Each time this has happened, it has taken years for me to be able to build my body back up to a state at which I begin to feel strong again on a regular basis. And each time I have felt like my body has been noticeably weaker, even once I recover, as though this kind of crash does some sort of permanent damage that I never quite fully repair.
I have never found a way to de-rail this pattern. Every time in twenty years that I have begun to feel like I was really starting to get good energy back, really starting to feel healthy again, my ADD states have increased and sucked the energy out of me faster than I can produce it so that I have a serious crash. It is as if the foundation I am standing on is not yet strong enough to support the energy that starts pouring out of me and it crumbles.
I think the Cortisol is tied more to the adrenaline, ADD type energy than to the basic body energy. I don’t think t is completely tied to it, however. When I take Ritalin, it gives me the kind of adrenaline burst that ADD gives me, allowing me to hyper focus and accomplish extensive things in a single day. But it leaves me so depleted that I am often weak and shaking for weeks to recover from a single day of Ritalin use. In fact, the consequences of my taking Ritalin have gotten so extreme that I have not used it in over a year. I don’t think my body could sustain the creation of the energy it gives me and I am afraid that a single day’s use might send me into a major crash. It feels as though Ritalin pulls all of its energy from adrenaline and forces my body to convert large amounts of energy at a high rate of waste, and I don’t have the reserves to sustain that without damage anymore.
The Cortisol does not quite do that. It does not pull and pull without giving anything back. As though it is not completely tied to adrenaline, but is balanced somewhat with the other, basic energy as well. But I have no doubt, given what I experience, that Cortisol is more tied to adrenaline than the other kind of energy. Its defiantly weighted on that side of things.
The Cortisol gives me energy and helps me build up my strength. And sometimes that is a very balanced, whole person energy which sustains both my mental and emotional energy and my physical needs. But other times, generally when it feels as though my basic body energy is too low and has dropped bellow one of those critical lower levels again, the Cortisol effects me differently. At those times, not taking it leaves me barely able to function, so I am not at all saying that it is not an improvement to take it. However, when my basic energy levels are too low, the Cortisol is likely to trigger the ADD energy state without leaving me the basic foundation energy to sustain it. The result is nights like tonight, where I can’t get my mind to stop racing into exciting projects enough to sleep. And if this keeps up, that can lead to a major crash.
One night of this is not a big concern. But it has made me aware of this pattern I have experienced so often, which always begins like this.
Something - maybe resting or some treatment or new way of eating - finally begins to build up my strength again. This time, I think it is the Cortisol that begins to give me back some of my basic energy again. But it propels me into a place at which my energy is now good enough to allow that which I think would otherwise be my natural state of frequent ADD trigger states. And I am not strong enough to sustain them yet, so they crash me. And it takes years to build back up again to be strong enough to do the whole cycle again.
I realized tonight that these past weeks and months as we have been working with the Cortisol and I have been having many more days of effective energy, I have been right on the edge of tripping this ADD state almost every day. I have kept it from really triggering, or stopped it when it did so that I could rest, by taking sleeping pills (at double the normal dose) almost every night and sometimes even for a nap mid-day.
What seems important to me is this: Whether it is the Cortisol or some other treatment that is working, eventually all improvements lead me to a place at which my ADD trigger starts to happen more than my present state of recovery can support and my recover is reversed again. I need some way to get through this stage of the healing without my ADD state triggering and derailing it (which I am not sure is possible except with heavy use of drugs, which I worry may be damaging in the long run as well). Or else I need to find a way to build up my basic energy reserves at the same time we build up my adrenaline system energy. The Cortisol, seems to get my adrenaline system up and moving and ready to really give me good emotional and mental energy bursts, but it doesn’t provide the same boost for my basic physical energy foundation. I think the Cortisol is a good step in the right direction, a definite improvement, but we need something else supporting it. Something that works on my other energy system at the same time so that it doesn’t overbalance and knock my feet out from under me. In fact, I feel like the discovery of Cortisol as a treatment for Chronic Fatigue Syndrome is a huge breakthrough and a great step forward. But there is another breakthrough that needs to be found at the same time, to go to work on the other system of energy in the body, in order for any of it to really work.
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