Update: I wrote this a few years ago when my adrenal insufficiency symptoms were much worse. As I posted a few weeks ago, this past year has brought improvements for me. I am honestly doing a lot better now but thought the principles shared here are helpful enough to still post this story and the lessons it contains.
The snow was several inches deep in the driveway as I left for work. As my car carved its tracks through the snow, I thought back to my teen years and my snowmobiles.
I owned a variety of snowmobiles growing up. We lived on a farm with big fields which in the winter would be laid out open, clean and white with snow. I would ride around my families’ fields with big wide expanses of smooth snow. I could turn or twist anywhere and race across the open fields. It was a great feeling of freedom.
I would mostly ride around my parents’ fields but sometimes would ride further. We couldn’t normally ride on the roads as they would have been plowed clear (and not “street legal to ride there anyway.”) We had a sort of secret path that we could follow to get around this. These paths would go from my parents’ fields and along the back of the various fields owned by our neighbors. In this patchwork way we could move from field to field to stay off the roads and have enough snow on which to ride. This patchwork was enough that we could ride long distances and even be able to make the 7 miles to town. If (or when) a blizzard hit, it was exciting to be able to be the one who was to get to town. I could imagine myself as the rescuer getting the mail and anything else that we might have needed.
My snowmobiles had lights on them and so I could go out riding in the evening too. Sometimes riding alone in the dark winter evening my imagination would start playing with me. “What if there was someone hiding back in the woods on the edge of the field?” It wasn’t rational but once the seed of that thought got in my head, it would grow. “Maybe someone was watching and waiting for me, seeing the lights of my snowmobile streak across the field.” As I drew near the woods on the edge of the field the thought would flare up into my head. “Perhaps they were at any minute going to run out and get me!” I would give into these thoughts. The invented terror would grow in my head. As it did so, I would push hard on the throttle and the snowmobile would sling itself away from the woods. As it did so, my mind’s eye showed me the evil mass-murderer, or perhaps the science fiction monster, or the wild animal jumping out of the woods only to be disappointed at my rapid acceleration away from them.
“Ha! Take that! You’re not going to catch me tonight!”
One day I was riding back home from town. With the short winter days, it was already getting dark and with the darkness had become a cold evening. I was bundled up in my snowsuit, helmet, and down filled mittens. I had wrapped a big scarf around my face and neck to protect myself from the wind. I was doing the usual jog around the back of our various neighbors’ fields. In one spot the path led down an angled hill, by a pond, and then angled back up out of the depression and into a more open area. I carefully navigated the snowmobile down into the depression. As I did so, my imagination started up again. “Whose field was this anyway? What if someone or something was down the hill away from the traces of moonlight and therefore hidden from sight? What horrors could be waiting for me down there?” I was eager to get down and back up before I could find out. My hope was that once heading up the hill I could squeeze hard on the throttle and fly away from the dark and gloomy area.
As I slid down the hill however the heavy scarf I had around my neck rocked forward just enough to get close to the air intake for the carburetor. The carburetor sucked the scarf into the intake area and effectively choked the engine.
This was not good.
I was sliding down the hill, right where all my terrors were waiting. This time, instead of accelerating back up the hill, due to my wayward scarf, my engine bogged down with no power.
I squeezed hard on the throttle and when I did so the engine completely quit. In that instant, I was left sitting in the dark, all alone, at the back of an unknown neighbor’s field with a killed engine.
I forced myself to calm down. Why did I have to give in so often to my active imagination! Calm. Think. Be okay.
I pulled my scarf out of the carburetor and more carefully tucked it into my coat. I reached down and pulled the engine over. It wouldn’t start (flooded as it was by my scarf in the carburetor and then the full throttle I had put on.) I tried to pull again and again. As I did my fears gradually gave way to frustration. I pulled off my heavy mittens to be able to pull with more force. I started unzipping and peeling back layers as I pulled and pulled, my body heating up with the exertion of trying to get the engine to start.
After a several minutes I got the engine running again.
It was just in time (or at least that’s what my imagination told me!)
I didn’t even take time to put my gloves back on but instead threw them between my legs to hold them and accelerated up the hill and into the open field.
Ha! I had cheated death again! The savage animal (or monster or mass murderer or whatever it was going to be) clearly was very disappointed this time. It thought it was going to get me but just as it charged down into the depression I was finally off and away!
As silly as that story is, I am reminded of that moment of the engine bogging down in recent years. While I can laugh at myself and my overactive teenaged imagination my remembrance is not about that, however. Instead it is that feeling of the scarf in the carburetor that comes back to me.
For most of my life I counted on my engine’s power being available. I was sure in my ability at will to squeeze hard on the throttle and have the engine reward me with a burst of energy. I could put myself in situations (like my invented near terror experiences as a teen) and then rescue myself by the reserve power within.
But then my scarf started getting sucked into the carburetor.
I don’t know what I thought the various chapters of life would bring but I had not anticipated that a lack of energy would define this current chapter. I had always enjoyed a mind that saw things to do and then a body that could do them. Now however there are times when my engine suddenly bogs. I squeeze the throttle, but my scarf has been sucked into the carburetor.
I was in clinic seeing patients. It was near the end of a full day. I was seeing a patient and doing my best to work with them to deal with some challenging issues. There were no easy answers. I did my best to try to honestly navigate their complex but real questions.
I could feel it starting.
My engine started bogging down. The first sign for me is dizziness. Next comes achy muscles. If I stand quickly, I will feel lightheaded.
My scarf was sucked in the carburetor. I have lived this enough now however and I have learned a lot. I now know not to just squeeze hard on the throttle. I have become adept at keeping the engine running. I was able to finish the visit and make it back to my desk. Then, I was able to pause and take a break. In essence, I was letting the engine shut down for a minute. I would be sure to more carefully tuck my scarf in away from the carburetor before I started the engine again. Having stopped for a minute, I was able to go on with my day.
The issue is not that I don’t have any energy. I feel odd complaining about this. As I go through each day, I will have times of fatigue and times where I feel better. In the times when my energy comes back, the old me wants to take on new things. When my engine bogs down I wonder if I am trying to do too much.
I have learned to understand this. I have more good times of day than bad and more good days than bad days.
The longer I have dealt with this, however, the more I have realized that it is a common issue for people with chronic disease.
I share this post now hoping to help everyone understand the realities of chronic disease.
My experiences have helped me to honestly listen and hear what my patients are experiencing. With that I have learned a few lessons that I can now use to help them.
- Fatigue is a common and unifying symptom of many diseases. It is clearly a part of heart failure but many other conditions as well. For me it is a sign of my primary adrenal insufficiency.
- Ups and downs of energy are normal. “How are you?” is actually a hard question to answer. There is so much variability from day to day and from moment to moment that there is no one way to truly define how you are. I am fabulous/crummy/okay/wonderful/tired all in one day. (I am just happy that this past year is bringing more good than bad for me…)
- Dizziness or what I call “ill-defined lightheadedness” is a common symptom of fatigue and tiredness. It is not low blood pressure or low blood sugar or an inner ear problem. It is just my brain telling me that my body is exhausted.
- Trying to just “push through” generally doesn’t work. A period of rest, even a very brief one, can be restorative. I now am fairly blunt with my patients. They can choose to make themselves miserable, or they can face reality and accept their limitations. They need to have a realistic understanding of the limits of their energy. They need to think about taking a rest period not as a failure but as a way to reclaim the rest of their day.
- Rebound fatigue is common and normal. Just because you feel good does not mean that you can do what you want. You might pay for it the next day. With my internal drive to “do”, Monday’s have often been hard for me, reflecting the things that I pushed to do over the weekend.
- Recognition of your limitations can have value in forcing you to focus on what is important. I tell patients, “You can’t save the world anymore. You never really could but you used to be able to try. You need to stop trying. What is there to do that is important for you to do? Choose those things and shake off the rest.” This also includes a favorite expression that I use with patients, “The things you really don’t want to do is what young persons were invented for! Ask for help!” They usually laugh at this as they recognize that it is okay to not feel guilty about hiring young energetic persons to do what they don’t want to do or don’t have the energy to do.
As I continued to drive to work I drove past an open field. I looked out fondly at the smooth expanse of snow and thought of the hours that I spent riding around on my snowmobile. I laughed at myself when I recall that evening in the little depression where my engine died. The monster didn’t get me that evening. More importantly, life went on and despite the engine dying it started back up again.
For you see, the engine was still fairly sound underneath it all. It still had more power to give and more things it could do. I just needed to take care of it properly. I needed to give it enough air. I needed to have realistic expectations of what it could do. I needed to appreciate what it could do rather than being frustrated at what it couldn’t do.
So how am I?
I don’t really know. A lot of the time I am great. Sometimes my scarf gets stuck in the carburetor. It can be frustrating, but I have gotten used to it and have learned how to cope. And every day in my practice as my patients talk, I can hear them in ways that I was not capable of before. They may not realize how their words resonate with the experiences that I have learned to live with and cope with.
What are the lessons in this?
- Many, many people have fatigue as a limiting factor in their lives. They would love to do more. They can’t.
- Paul talked about having a “thorn in the flesh.” While we don’t know exactly what his struggle was, we do clearly know his response to it. “Three times I pleaded with the Lord to take it away from me. But He said to me, ‘My grace is sufficient for you, for My power is perfected in weakness.’ Therefore I will boast all the more gladly in my weaknesses, so that the power of Christ may rest on me.”[1]
- This is a fallen world. So many have illnesses and limitations that they deal with on a daily basis. This is not the world that God originally designed for us. It is also not the future hope that He has in store. But by our limitations we perhaps are able to realize that we are not strong enough on our own. We need each other. We need Christ. His grace is sufficient for us, and his power is perfected in our weakness.
- In this life we will face illnesses, limitations, and deficiencies. It is a reality of life. I hope and pray that I (we) can respond like Paul.
Oh – and a couple of more lessons:
- If you have an exposed carburetor on your snowmobile, be sure to tuck your scarf safely inside your coat.
- If there is an evil monster waiting for you as you are driving by, be especially careful to have your scarf tucked away!
[1] 2 Corinthians 12:7-10
