OTHER PEOPLE
Most people have experienced acute illnesses, and this is what they relate to. They have no real concept have what the "chronic" in chronic illness really means. So I have to constantly communicate my condition to others. The fact that I look normal and can be productive for some periods makes it all the more difficult.
I have set up my phone mail and e-mail so that the messages tell people just what to expect: I am on medical restriction and not working much more than mornings. So if this is the afternoon, I probably will not be getting back to you until tomorrow. And my web pages make it clear that I am not up to much e-mail communication.
The people who I work with most are now well aware of my condition and how dangerous it is to try to push past the time when I know I have to leave. The first time I tried to stretch one extra hour for an "important" meeting, it cost me 19 months of recovery before I could work a full day again. That's the harsh reality of it.
People are well meaning. And they wish me a recovery or that they hope I am feeling better. But it is hard for people to get past the idea that all I need is a good night's sleep or some other solution to an acute condition. They just do not understand what chronic means until they have been around me long enough to understand it day in and day out, the way I have to live it.
Other well-meaning people suggest this or that possible avenue to pursue. I do appreciate hearing alternatives. I certainly do want to get better. But I cannot pursue them all at once. So just because I have not followed someone's advice does not mean that I did not appreciate their concern. But sometimes people take it that way.
When my meter goes into the yellow zone, no matter what I am doing, I know by bitter experience that I MUST go and get some rest, regardless of how others may take it at the time. I know by bitter experience that attempting to tough it out for a few more minutes at the wrong time can cost me months of recovery. For people who I have just met, it may seem rude to suddenly break off and go. Even though I try to explain, they just do not have the concept of such an illness and so take it personally. The fact that it came on suddenly meant that I was too involved in the events and not listening to my body's signals, so that the situation has become urgent and I just cannot risk going into longer explanations -- I HAVE TO rest or pay the price. So I have to go back to them later and try to get past their hurt feelings, if they are open to that, and let them understand what happened.
The same thing can happen via e-mail. I can go for a few days holding normal e-mail communication and then all of a sudden, something changes in my environment that forces me to respond by dropping things for days -- sometimes for weeks.
My e-mail backlog from my web pages dates back to Fall 1998 -- it is in the thousands of e-mails, many of which may never be answered. I just cannot answer all the e-mail that has come to me. I keep it all there, hoping that some day I will be able to answer a few of them, and sometimes I do. But that is rare. Even maintaining my web pages is something that happens only in short spurts. I have had to completely give up maintaining some of them. No amount of good intentions can make up for the fatigue.
THE BIG AND LITTLE THINGS
My mind does not slow down, just because my body cannot do what my mind dreams up. I am a highly creative person, and it is very frustrating to have to let go of so many wonderous things that I would like to realize.
Setting priorities when I am severely fatigued is easy. The hard part comes when I start feeling a little better, and I consider taking on a bit more and a bit more and ... collapse again.
Juggling all the balls, the things that need doing, the mail, the e-mail, all of it falls on the ground when I have a relapse. It can be weeks before I can pick up more than the most highly crucial ones again. Even when I don't have a relapse, if I lose a night's sleep for some reason, it can mean days of carefully balancing my energy to recover, so that the priorities get real strict again real fast, and people wonder why I have suddenly stopped our e-mail correspondence or something like that. Or perhaps I just have to suddenly leave when people expected me to stay around.
Even on good days, I cannot handle multiple tasks like I could before the chronic fatigue hit. I can be very productive doing one or two things at time. But when I try to do more, things start to fall through the cracks. This has two implications. First, I have to really make a conscious planning effort that respects the real limits that I simply cannot push without grave consequences. Second, I have to try to take awareness breaks. If I am too wrapped up in a single task, I may be doing it very well, but I may be losing sight of the bigger picture -- including the need for rest.
Rest has to be a legitimate "activity" in my planning.
Planning time means planning with regard to the complete effort involved. Lots of people plan meetings with travel involved as if the travel time was a throw-away. My physical meter is running from the time I start out the door. So a 1-hour activity that involves 30 minutes of travel, really is a 90 minute activity to my body. And any attempt to pretend it is not is a clear path to a relapse.
Long distance travel, when I am well enough to do it, requires careful planning. I have to allow a full day for the travel itself and a day for resting after the travel before I can safely resume more normal (for me) activities.
Afternoon and evening activities require me to know several days in advance so that I can adjust my schedule to make sure I get enough rest before and after the event. Doing an evening poster session presentation for 3.5 hours, plus another hour for set up, take down and travel -- thus 4.5 hours of effort -- took me more than a week to recover from, even though I had planned well and rested well prior to the event.
I am a "human barometer." I was clearly reacting to weather fronts. So I obtained a good barometer. I found that my energy drops corresponded to low pressure fronts moving in. When I am paying attention to my bodily signals, I can even tell a front is coming before the barometer drops. This is apparently a common phenomenon among chronically fatigued people. A woman I met who had it actually also used the term "human barometer" to describe herself before I ever told her that I used the term for myself.
CAUSES AND CURES
When I first came down with this, I did not realize it was chronic. So I tried to go back to work, and my health fell apart again. So then I went back part time. After 7 months, I was able to work full time. But then spending an extra hour at a long meeting led to a relapse, and it was 19 months before I could work a full day again. Then I had 5.5 good months, followed by a difficult month that ended in 3 days of complete exhaustion. Since then, I have been struggling for 8 months (as of June 1999) and am still only working 3-5 hours a day.
So how did this start?
I knew that the problem began from a sinus infection. It started with a low-grade viral infection after Thanksgiving 1995. I thought that had cleared up, and I went on vacation to Florida. It was VERY cold there that December -- ice on the ground. And I became very ill with a bacterial sinus infection. For 3 days, paying Disney resort rates -- I had decided that for once in my life I was going to splurge and stay in a Disneyworld resort, I could do little more than lay in bed. Fortunately, I was too sick to worry about the wasted money at that time. When I got back home, I tried to go back to work, and my health fell apart. A month later the Doctor post-diagnosed it as mononucleosis -- or something close enough that the treatment was the same. For college students, mono is 3-6 months of total fatigue. At age 51, it is much more severe.
As I went through the following months, alerting people to my condition, I learned of others who had similar experiences in their 40's and 50's. They seemed to say that after 8 - 10 years, things got better. But it was hell during that time, and it meant major lifestyle changes for some.
I surfed the web, and I found very little solid material about what causes it and what might cure it. I resisted calling it chronic fatigue. I said I had had mono and was in the midst of a long recovery, with some setbacks and some progress along the way. The main treatment seemed to be rest and keeping a careful balance and watch on my body's signals. The best advice I received was "Err on the side of your body." It really is the best advice for chronic fatigue. You simply can NOT bull your way through this, tough it out, being a "no limits" person, or all the other cultural drivers that we hear. If you do try to tough it out, you WILL have a relapse. A single hour of pushing too much can cost you months and months of paying for it. I learned this the hard way.
So what causes it?
The web sites reflected the absence of any real explanation for how you get chronic fatigue nor what the mechanisms are for how it works. There was a lot of latching on to different popular causes - yeast, for example. But there were very few hard research results. One thing that I have realized though is that there are multiple causes. I don't mean that one person has multiple causes, though that could be in some cases. I mean that different people have different causes.
The first really solid explanation for my type of chronic fatigue came from Dr. Robert David Tufft of Oakland, CA. It is a connection between chronic sinus infections and chronic fatigue. The profile he developed was such a good fit to my history that it sounded like he had followed me around for the last 15 years taking notes. In a nutshell, here it is as I understand it. (1) The person has a bacterial sinus infection. (2) Antibiotics are prescribed and knock it out by killing the bacteria in the sinuses. (3) But some of the bacteria have taken up residence in the porous skull bones around the sinuses, and the antibiotics do not kill these. The effect of the antibiotics linger for a couple of months, but they eventually wear off. And then the bacteria migrate from the bones back into the sinuses. And the cycle starts all over again. This goes on and on for years. In my case, I had sinus surgery in 1991, to widen the sinus openings and correct a deviated septum. For a few years, the cycle was broken. I did not have sinus infections, and when I did 2 or 3 years later they were -- at first -- one-time events and not part of a cycle. But now the cycle is back in full force. Since December 1997, I have gone very regularly from infection to antibiotic to infection, every 3-4 months. I can almost plan for it now.
Dr. Tufft also has found root canals that protrude into the sinuses to sometimes be a cause. That turned out not to be a problem for me.
So what is the cure?
I don't know yet. I am still waiting (3 months and counting now) for my insurance plan to approve the specialized skull bone scan that Dr. Tufft needs to image the bacteria in the bones. the cure is to get rid of those bacteria. He has helped a friend of a friend, who suffered from this for 25 years. But for some reason, I simply forget to ever ask what the treatment was. There's something psychological there. I do know that Dr. Tufft has co-authored several research papers on this and that he has successfully treated others with this type of chronic fatigue. So my hopes are high.