My closest friends have seen me walk through some very difficult times with my health over the last several years. Where others see the “together”, upbeat and accomplished Jim, they see the reserved, careful and slow-paced Jim who is learning to live with chronic fatigue.
This all started several years ago. I had founded and was running a number of successful international businesses, including a law firm and a cutting edge scientific consulting firm. But in 2006 I had to walk away from it all due to debilitating chronic fatigue that began more than a year earlier.
Stress As a Factor
At first, I thought I was struggling with routine burnout – which I now realize may have been a factor but was not the full story. In early 2008, my doctors discovered that I had been suffering from a very rare autoimmune condition called systemic sclerosis (sometimes known as scleroderma).
Initially, I was relieved to know that my fatigue wasn’t “all in my head” and that I really hadn’t gotten lazy. But that didn’t make the fatigue or the impact it was having on my life any less devastating.
Eventually, as I researched systemic sclerosis and talked to my doctors, I learned that stress – as typically is the case in many autoimmune diseases – was a big issue. It doesn’t necessary cause the disease, but it can trigger the onset and then exasperate the symptoms.
With me, those symptoms – which on top of the fatigue also included mild depression, chronic pain and joint stiffness – had become so bad that in 2007 I couldn’t function anymore in the basic aspects of life. By early 2008 I was reduced to walking with a cane due to the fatigue and the overall pain, and my prospects were bleak.
I ended up losing everything: my marriage, my family, my businesses, my wealth and eventually my sense of self.
Since then, God has gracefully removed many of the stressful situations and relationships that had been plaguing me and, as I began to find my validity in how He defines me – rather than how I was defining myself – I’ve seen great improvements. As part of that process, I’ve also been learning to manage any stress that still occasionally surfaces by understanding, more and more, that God – rather than some circumstance – is sovereign over my life!
Overall, as I’ve been re-discovering the joy and wonder of life, most of the more severe symptoms of the disease have abated. The pain has lessened (although I still need various medications, but at greatly reduced doses) and since early this year the intensity of the fatigue has decreased.
Nonetheless, I still have fairly constant, low-level chronic fatigue.
Running Out of Energy
To those wondering about chronic fatigue, the best way to describe it is to contrast my life with “normal” folks.
Most folks wake up each morning with essentially a full reservoir of energy. Think of it as a big gallon jar (although the size of the jar will vary from person to person) that’s filled with stamina and spunk.
Someone who is healthy uses and replenishes the energy in their jar throughout a typical day. They do some things that are a net energy drain, but they also restore their stamina by doing other things that energize them. Those things vary from person to person, but their jar very seldom runs totally dry and after a good night’s sleep the jar usually is full again and ready for a new day. (And please, don’t tell me how drained you are at the end of the day — unless you have experienced chronic fatigue, you have no idea how much energy you really have even after a particularly exhausting day!)
Someone suffering from chronic fatigue has the same gallon jar, but they struggle with all of the expectations – both their own and from others – of what they once could do each day with their normal reservoir of energy. But now the gallon jar is never full – it is partially empty even when they wake up from a good night’s sleep. More significantly, as they participate in the activities of life, those things that once energized them can’t replenish their energy as quickly as before.
Two Kinds of Fatigue
With my systemic sclerosis, I’ve experienced two kinds of chronic fatigue. With one kind, the valve used to draw energy out of my jar is very, very constricted. I can’t suck much energy out at any one time. It’s like stepping on the gas pedal, but the car barely sputters along and lacks power. There’s gas in the tank, but I just can’t get it flowing fast enough to run the engine at full speed.
That’s what it was like when my fatigue started and I ended up divesting myself of all of my business and professional interests. I just couldn’t get enough energy flowing to do much of anything. The simple, routine tasks of life were nearly impossible — even when I was motivated and wanting to do more.
With the second kind of chronic fatigue, the valve is able to handle a full flow of energy and I rev up my engine just like normal people. The problem is, there’s just not as much energy to keep that flow going. In this example, I step on the pedal and the car accelerates to 60 mph just fine, but it’s just not going to go very far before the tank runs dry. To use another analogy, I am “good in the moment” and full of spunk and life, but when the task at hand is finished, so am I! This is more like my life now, although I’ve learned some important coping mechanisms.
Under either type of chronic fatigue, I’ve learned to pace myself if I want to keep from depleting my energy jar. I don’t have as much energy in my jar as most folks, and even if I’m able to get a good flow of stamina going, I know I can’t replenish that energy fast enough to take on the whole day at a “normal” pace.
This means I need to carefully regulate my activities throughout the day so that I don’t use more energy than is needed for the entire day and it’s expected activities, while also protecting my ability to do those things that energize me (howbeit more slowly than normal) – which may be a nap, lunch with a close friend, taking a quiet walk, reading a good book, generally just chillin’ out, bass fishing or whatever.
For those suffering from chronic fatigue, and those dealing with this condition in friends and loved ones, accept what’s happening. Denial is deadly! Everyone involved needs to adapt to an entirely new reality. If you have chronic fatigue, don’t beat up on yourself because you can’t do everything you once did at the pace you once did it. Such guilt only causes more stress and makes your situation worse. Rather, find joy in simplifying your life and learning to focus on what’s truly important. Also learn to let others do some of the things for you that you previously did yourself – for me, allowing this remains very hard but I’m learning to adjust.
Most of all, learn to monitor how much energy you have left in your jar at any given time, how much energy is needed (and how quickly you need it) when evaluating what you should and shouldn’t do, avoid over-doing things, and find time for the things that uniquely replenish your energy reserves (while factoring in the reality that it will take longer than normal).
Adjusting to Reality
When dealing with chronic fatigue, you will feel guilty and struggle for a season over what you can’t do. Others may not understand your slower pace, or why you can be perfectly “normal” when doing one thing but then need to excuse yourself from further activities. But if that relationship is worth keeping, they will learn to accept and understand your limitations. But most of all, take joy in learning all of the new things you can do as you re-order the obligations and responsibilities of life. If you let it, that will be a wonderful journey of discovery.
The bottom line is that you need to get comfortable with figuring out your own pace and activities so that you minimize how frequently your energy jar runs dry. It will take some time, but I’m learning that it certainly can be done.
Despite it all, I have found that a slower paced life – where I can take the time to relish fulfilling relationships, focus on the truly important things of life, and enjoy those things that renew my energy – is more fulfilling than my past life. For that, I’m grateful and I can’t imagine ever going back to the hectic, stress-filled existence I once fought so hard to foolishly preserve.
In an odd way, I have become a better and a happier person.
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