(2011 Preface: Looking back on this piece that was written about 6 years ago creates a multitude of thoughts and observations. For your purposes, I think it worthwhile to note that what I have written below still mostly represents how things are and how things seem to me, although some specifics are no longer true and some passages I do not fully agree with. Life, along with our perspective on it, changes, but I have chosen to keep the entry as it was initially written.)
Today’s blog will be a bit of departure from the normal fare. The purpose here will not be to make you think or laugh, but learn something about my life or gain a perspective you might not have otherwise had. My hope is to a) share information about my life; b) show you things so that you might not take other things for granted; and c) invite you to share for the benefit of all. The second and third points are quite important (but of course there is no pressure). If these things do not interest you, read no further. Something about consciousness or politics will soon follow. :)
In this odd world of ours, various people suffer various afflictions. Some have never known their parents because they are absent or have died; some are beset by anxiety or extreme shyness and have trouble in social groups; some children are abused, others are mistreated; some people have cancer or problems with addiction or live in poverty. My thinking is that once you learn about someone else’s life, you are more likely to appreciate whatever it is they don’t have. One might complain about how bad their relationship with their mom is, while another whose mom has died would give anything for that complaint. If you can truly realize that, then maybe you might approach resolution differently (still might not work though). If you envy a person who has never known financial concerns, but then find out that person would trade it all for more hugs during their childhood, you just might appreciate the hugs you received and not worry so much about the lack of fancy dinners or whatever. The aforementioned explanation relates to the title of this post: I know everyone has something, but that doesn’t change the fact that we can learn from one another about these afflictions. Recently, one of my best friends learned that his father would likely die from cancer in about one year. Makes me want to call my parents and tell them I care. Even if those feelings aren’t appropriate for you, if you thought you’d never see someone again (i.e., realistically, some
one’s relative/friend has to get hit by a car), then maybe there are things you’d want to discuss, issues to resolve, or just appreciation to be mentioned. So, when I write about my ‘burden to bear’ I’m not looking for a medal, it is just a way of sharing, contextualizing my life (and maybe yours as well). I know some readers are more personal than others, and some others may not care at all (but because the content of my blog this is less likely), but ideally others would feel comfortable to share their trials and tribulations. As it is the information that is important, do not feel that your identity is required if you chose to post a comment.
Concisely, I suffer from Chronic Fatigue Syndrome. It is also known as Chronic Fatigue Immune Dysfunction Syndrome and Myalgic Encephalomyelitis. It is a chronic, debilitating medical condition with an unknown cause. It is diagnosed by exclusion and has no known verifying test. The treatment is relief of symptoms, life style changes and occasionally time. For your information (and for the clinicians out there) the CDC
states that “Clinically evaluated, unexplained chronic fatigue cases can be classified as chronic fatigue syndrome if the patient meets both the following criteria:
(1) Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.
(2) The concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue. (fyi, I have the muscle and joint pain, unrefreshing sleep, the malaise, and had the headaches)
As for my story, I guess one should begin at the beginning. I should also mention that this is my memory of the events, which like all memories, is imperfect. I keep meaning to attempt greater accuracy by concerted research, but know that the basic story is true and has been corroborated by others who were more aware at the time.
Rarely can a single event define a person. Even if that event is very significant, it will just illustrate how your personality would react and develop (over time if the event is prolonged). For the most part, one could reasonably say that some events have greater causal effects than others. I would say that is a decent description of my situation, but also that my condition is likely the single biggest event to impact my life, and always will be.
I was generally a happy kid with loving parents. I did well in school, had friends and played on various sports teams. I would get up early, sometimes shoot some basketball before going to school, school, run home for lunch, back to school, then ball hockey with friends or playing in a nearby park. The usual active kid. One day in grade six (1990), my legs hurt and I was just too tired to go to school. I have a vague memory of exhaustion. Here’s a brief account of what happened the next four years. Tons of doctors: Family doctors, specialists, neurologists, three sleep studies, numerous prescriptions, vast amounts of bloodwork, trips to the hospital, and a couple of psychiatrists as well. This was all a quest to learn what was wrong with me. Was it mono? Ebstein-barr? Fibromyalgia? Psychological? Allergies? Brain malfunction? Immune system?
Though my whole family was supportive, my mom was definitely the driving force. She was a nurse for 25 years, so she had an idea of what questions to ask and where to seek help, she was also extremely supportive and I likely owe her more than I can express or comprehend. She would also keep track of everything. Years later, she told me that one year we had an average of 2 visits to a doctor/clinic a week. 104 visits in a year? No wonder I hated waiting rooms.
I remember that I was in pain. I felt exhausted, had a bad headache constantly (months at a time, for years) and had trouble sleeping. It is truly hard to express how fatigued/pained I was. Try to imagine not being able to brush your teeth. Try to fathom not being able to be driven around for 20 minutes. If I concentrated too much, I’d get a headache. It not only seems like another time, it seems like another’s life.
Basically, imagine having the flu for a thousand days.
Scholastically, I missed half of grade six, and most of grade seven, eight and nine. The course of my disease was not unvarying, in that I would seem to be better, and then have relapses (mostly severe). An example would be that in grade 9 I felt better, so I went to school like a ‘normal’ kid for the full day and such. Three weeks later, I was sick. I missed the next 8 months. It is odd to see your attendance record say 125 days absent. I did have tutors: a kind woman by the name of Janellen, for about an hour a day when capable for parts of the grades grade 6,7,8. In grade 9, two tutors came once/twice a week for the year. Amusingly, my memory is that they came about 5-7 times total. Based on past performance and minimal coursework, I passed through elementary school. In high school, I graduated honourarily.
From a SPECT scan it is known I have a decreased blood flow to my right thalamus (in relation to my left and normals). As my mom would research all things about CFS, she would note which vitamins might help my condition. I was taking about 20 pills a day, plus some acetaminophen and whatever my prescription was at the time. (If you do some math, I’ve probably taken over 40,000 pills in my life). I had Tylenol 3s, and also had them not do enough to stop my headache. I’ve gone to the hospital for an injection to do so a couple times.
During my sickness, at times when I was a bit better, my mom would invite friends for lunch. She realized the importance of social contact and how much I was missing. Some have said, “Well, you don’t really learn anything in those grades anyway.” A more reasoned thought would be that it is highly probable that losing about four years of psychosociointellectual development is important. When sick, I would be too tired to read (or play video games even!), yet not enough to sleep, so I would watch a lot of TV. As much as I think a television might destroy a nation more than nuclear bombs, I have to give my thanks to that stupid box. That level of stimulation likely helped quite a bit, more than I might know.
I have had a relatively consistent level of functioning since grade 10. Trying a new drug allowed me to attend school halftime, in the afternoons. Before grade 10 started, the courses I would take throughout high school were planned. As I could not take that many, many subjects were sacrificed for English and Math, the core requirements, and basically my OACs (grade 13 from ye old Ontario high school system). There was some flexibility, but I never had a chance to take art, music, languages, geography, or various histories (I took 3 total for the OAC). I would be driven to school, go to three classes and come home to rest. Happily, I did well. Quite well it seems, as I was allowed to skip grade 11 English. That helped so I could take another OAC. I was able to take 5 classes (instead of 4) in grades 11 and 12, and 4 in OAC to have 7 OACs and an honourary diploma. I have to remind myself that if things were a little different, I would have never made it out of high school.
It pleases me that since the start of grade 10, I never missed a day or class in high school, nor was I ever late. The idea of skipping class, aside from being wrong (yeah, I was a goody goody) doesn’t make as much sense when you have missed so much. The very fact of being outside, in the world, experiencing both it and people, gave me great happiness. One could imagine my fellow teenagers didn’t exactly feel this way; in fact they had much more angst. My parents always being quite reasonable, and my condition changing the normal course of development, I often felt separate from my peers. Drinking to get drunk, angry music, not appreciating what they had… it didn’t make sense to me. I wouldn’t say I was isolated, because I had friends and people to hang out with, but I did feel like I didn’t belong (I guess that is a common feeling though).
I was able to go out, to exercise, and to go on trips, but there was always a cost. While other people would do one activity, then another, I had to rest in-between. I use the term ‘resting’ to mean recuperating. It doesn’t really count as resting unless I’m lying flat on my back, fully stretched out, with minimal disturbance (meaning TV or nothing).
It might be hard to understand, but I’m losing energy when I’m sitting.
As the years went by, I would basically cope with my disease, trying out new medication from time to time to either help the muscle pains, exhaustion or sleeping problems. None have really improved things. Generally, if anyone is in pain, they will often try to understand the source of the pain, either for treatment or prevention. If you can imagine pain happening everyday, that will be a lot of introspective and/or behavioural analyses. Picture that for years. What I’m trying to express is how I currently think: almost in a state of continual self-monitoring to try to detect levels of fatigue and exertion to minimize future pain. It has its pros and cons. If I didn’t think about it, I would be in more pain and accomplish less, but if I do, then I have numerous annoying cognitions. I think about how I walk, how I sit, how many stairs there are, how long I have to stand somewhere; basically I cost-benefit every situation. It isn’t just about future pain; it is also incorporating whatever pain I’m currently experiencing. Anything that involves movement, counts as expenditure. I’m not saying it is perfect or that I’m perfectly aware, but if you’d like to sample the experience try asking yourself how/what you are feeling every couple minutes (sometimes in tens of seconds).
Another related issue is awareness of my disease. Usually, people will not know unless I tell them. I’m in decent shape and I don’t usually act exhausted. I’m generally a happy guy and even when I’m not, when I’m around people happiness is usually brought out of me. When I go to school or socialize, I will rest before and afterward, so people don’t really see the exhaustion. Most things that I would like to do violate social protocol too much. It is somewhat unreasonable to lie down on the floor in the middle of a lecture. Or to tell someone “Can we sit down and talk because my legs are about to collapse.” Another point of this blog is that I won’t have to repeat myself or continually type out the situation to new people I meet. I also think everyone has their own problems; they don’t need to hear about mine all the time (this blog is the exception, but it has other uses). I do try to share my whole world more, as I think it is important for people to know. It appears that it is hard for people to understand my self-report unless they see behavioural evidence. But, that comes with the risk of invalidation as well as explanation. If I lie down on the couch in the lounge, some think I’m lazy or had a rough night. No. I’m just diseased. And when I lie down again 40 minutes later it is because I’m attempting to charge up for a two-hour class. I don’t put my feet up because I really want to; it is because it minimizes the pain in my legs. It isn’t that I’m not interested in an activity or a lecture/event, it is that the sacrifice is too great for me to maintain my normal existence.
I usually sleep, but it often isn’t restful. Ideally, I have about 14+ hours of downtime. For comparison, if you are normally healthy, you have 3-6 hours more time than me. Every day. That’s 21-42 hours a week, or a day a week. This gets into a whole line of thinking that is worth sharing. First the qualification: I have thought a lot about the lives people have, how their genetics influences their existence, their upbringing, their personality and how it might react to certain circumstances, opportunities they have either had or haven’t, and cultures they were borne into. By no means do I have all the answers, but I can understand (in a general, plausible manner) why someone would do something or behave in a certain way. The expression “I can’t imagine someone would…” doesn’t make much sense to me. My metaphysical stance currently indicates materialism with no free will (but still responsibility; I’ll explore another time), which is great for being less judgemental and less critical of people.
I know why people don’t value something, because they get accustomed to an existence that has it, feel that is how things are and how they should be, and only notice it when it is gone. As I’m similar (i.e., human), I understand that and cannot complain too much. Additionally, like at the beginning, there are a variety of problems in this world. Some are blind, others have no legs, still others watch their children starve. There is context, but there can also be complexity and variety of thoughts and feelings. Consequently, I think exhibiting my ‘bitter/ranty/less rational’ side is worthwhile because it may serve as an aversive, motivating stimulus. If not, it just gives an indication of the thoughts someone like me might have.
How on earth is everyone not happier? You can walk without thinking about the damage it will cause you, how hard could your life possibly be? How are people not fitter? You can exercise without days of fallout? I actually do think most people could look like magazine covers (the few reasonable, not-so-airbrushed ones), if they just had the desire. You have a day a week more than me?!?!? What the hell are you doing with it? That’s enough time to work a part time job, volunteer, socialize, read half a book, write an essay, play a sport and recover from it all. EVERYWEEK!
You may worry about a family, but I must additionally worry that I won’t be able to work, drive my kids to soccer practice and love my wife. Whatever you try to jumble in a day, imagine losing 5 hours. You just don’t know how precious your health is. I almost wish I could give everyone some disease for a couple weeks or a month. When I hear of people with mono for six months, I envy them. Six months? I’m almost at 15 years and I’ll likely have this the rest of my life. The idea of doing something (museum, night out, walking downtown) comes with thoughts about future pain. I must overcome the cognitive concern that accompanies the idea of most things. You have the ability to do so much… and it is wasted. It makes me so sad to see it; it brings frustration beyond belief. At the same time, it is likely the reason I can mostly keep pace. Your wasted time is my recuperation, so it seems like the output is the same. Except mine is uphill, almost always. It is rare for me to feel ‘not tired.’ I know it existed, but I don’t have a known memory of being healthy.
Please appreciate what you have. Please.
I hope this lengthy description of my life, my thoughts and my feelings has had some value. Know that there are thousands of others afflicted. There is more to say in almost every paragraph, but I think enough has been said for now.
Hey, everyone’s got something, right?
I should mention that for most of the past 10-15 years, when I’m rested I feel that life is so beautiful. Why? Because all the pain doesn’t remove clouds, sunsets, and laughter. So many wonderful experiences are free in this world, embrace as much as you can.
Know that this has also been informative for me. It is still hard to believe it is my own life. For appreciation of my current existence, I don’t really have to go to another’s, I can just go to myself in a different time. It is so easy to forget, but the effort of remembering is worth it.
It is hard for me to soar if my wings are clipped, but hey… at least I can walk now.