ORNERY ABOUT GLANDULAR
So I never finished writing about my europe trip from six months ago.... and thats because shortly after I returned home, I came down with something that was later revealed to be glandular fever.
In the time since I fell ill I have explained many times, to almost as many people: no, i’m not better yet. Furthermore: no, i can’t just work a day or two each week. I don’t blame people for not knowing these things, I am most likely the first person with this condition that they’ve ever met, but it has led me to an inevitable conclusion: nobody on the planet has any understanding of what living with fatigue is like.
Now THAT, I can fix.
So this is where i’m gonna lay it down for you. Maybe you’re one of my friends and I linked you this so I wouldn’t have to explain it again. Maybe you have no idea who I am. That’s fine too. You will bask in the light of my literary prowess all the same.
Before we begin, there is one rule: Do not feel sorry for me. I am about to say some FACTS about an experience of mine which is objectively negative, for the purpose of education. If you find those FACTS to be DEPRESSING, this falls into the “You Problems” category. I will dispense no further oxygen on this matter.
Let us begin.
The first and most important thing to know about life with fatigue (and I put this first because I expect most people will only read the very beginning of this and get bored), is that whether you know it or not, you have spent your whole life having your brain molded by a reward system where you put in effort, and get some kind of positive reinforcement for it. You spend 60 minutes studying, you get a dopamine hit. You spend 60 minutes cleaning up the house, you get a dopamine hit. Even if it was something you hated every moment of, the fact you have accomplished something feels rewarding. And its this reliable reward system that, whether you realise it or not, leads your monkey brain to doing almost everything it does.
Consider an alternate way that things might play out. You try to clean for 60 minutes. After 5 minutes you have a bit of a headache, but you keep going. After 15 minutes you’ve made good progress but you’re not only in quite a bit of pain but you are starting to get cold sweats and a little bit dizzy. After 30 minutes you’re not really making any more progress. You’re trying your hardest but your head is SPLITTING, and your heart can’t keep up with the oxygen your muscles are using just to stay standing. Your actions are slow, uncoordinated, and sometimes destructive. This is the point at which the uninitiated will give up. Only somebody who hasn’t been diagnosed yet (or is yet to learn how their condition works) will have pushed themselves this far. Fatigue veterans stop after 5 or 10 minutes because they know what’s coming. And if you were some kind of madman who decided to keep going even as your body starts shutting down and disobeying your commands, its important to note that all your steadfast determination isn’t going to make the house ANY cleaner. Your body’s physical limitations simply will not allow it.
THAT is what you need to understand to “get” the fatigue experience, first and foremost. Its that people who suffer from fatigue aren’t living in a world where they put in effort and receive a commensurate reward. In fatigue land, giving up is an incredibly valuable skill. Doing a little and giving up is the only way WE get our dopamine hit. In the above scenario, a fatigue veteran who gives up 5-10 minutes in and has a short rest has a good chance of getting back up 20 minutes later to do a little bit more cleaning. The fatigue novice, who went a full 30 minutes before they decided to give up, will be in bed for a minimum of three hours. Even if they got twice as much done as the fatigue veteran, it cost the novice what it cost the veteran six times over. “Trying harder”, “Pushing through the pain” and other strategies which serve healthy people well are nothing but idiocy in this world. So if you see somebody with fatigue lie down after doing something for five minutes, that does not in any way mean that they are not dedicated to the task they are undertaking. On the contrary, its quite possible that they have calculated exactly what rest pattern they will need to follow in order to get as much done as they can that day, and are following it to the letter.
So when a fatigue sufferer “pushes” themselves to get something done, they don’t get that dopamine hit because they know they haven’t gained anything - only lost. The only time WE get that ping of satisfaction is when we do something for a short period of time, do not tax ourselves overmuch, and cease. Then we can sit down and say, “I just put four plates and two cups in the dishwasher. Good job me. Now i’m going to have a lie down, so that in 5-10 minutes time I can do something equally tiny and productive”
Also, it is worth noting that usually, doing a task for five minutes and lying down is THE fastest path to completing it - but to somebody who doesn’t understand fatigue, this looks like laziness. Which is sad because criticism of this approach is genuinely counterproductive if the critic actually does want the task completed, since asking the fatigued to push themselves beyond their limits is straight up inefficient.
Before glandular fever, I spent most of my life doing deeply involved, highly demanding things. Now that I have it, I have done almost none of the things I used to enjoy doing, because I have a different set of capabilities. I have had to find a different set of things to enjoy, because the things I ACTUALLY enjoy are locked behind the cost of escalating pain and incapacitation I talked about earlier. I could still go rock climbing, I could still program, I could still play quake, but doing any of those things, I would experience escalating levels of pain and incapacitation. I would rather sit in a deck chair and water my oregano while feeling healthy, even though doing so is dreadfully boring by my old standards, than do the things I used to do, but do them while fighting my way through painful physical symptoms.
As luck would have it, gardening is an activity uniquely suited to the fatigued. Plants are quite happy to do most of their growing unsupervised. 30 seconds a day is quite easy to spare in order to keep them watered. From my old hobbies, on the other hand, take programming. Depending on the complexity of the project, it can take anywhere up to an hour to finish pouring all the information you need into your head, before you write a single line of code. When you sit down to do some programming, you have to remember oh yes this is what i was working on, this bit was working and this bit wasn’t, this is connected to that, and by the time you’re 10 minutes into this process, your fatigue veteran time is up. And that would be the case even if mentally taxing tasks weren’t especially difficult for the fatigued. But as it just so happens, they are. Which brings me nicely around to the second most important thing you need to understand to “get” the fatigue experience.
Thing 2: Thinking Hurts Too. The brain is an extremely demanding organ. It uses huge amounts of calories and blood oxygen, and that increases when you activate it. When you start thinking, like actually turning on your brain and spinning all the cogs, its demands increase. It starts burning more calories and more oxygen and for a body with fatigue or poor circulation (and the two often go hand in hand) that is often just too much. It is a common misunderstanding that because my job involves sitting in a chair all day, it should be one of the easier jobs to perform while under the malaise of fatigue. That is in fact the opposite of true.
The other day my partner asked me for help calculating nutritionally-complete portion sizes for her service dog, given a set of possible ingredients and a set of nutritional requirements. Instinctively, I leapt into action - I’m sure any of you would do the same if somebody important to you asked not just for your help, but for your help in something you have trained for your whole life. As a software engineer i am uniquely well equipped compared to the average citizen to help her figure out something like that, and I immediately went on wikipedia and started reading about the best algorithms for solving the knapsack problem (which this problem was sort of a modified version of).
I lasted maybe 40 seconds. My former, healthy self i’m sure would have had no issue grinding away at that problem for an hour or so until he had developed the perfect doggie meal plan, with the power of maths. But I, 40 seconds in, developed a SPLITTING headache, and ended up laid up in bed for the next few hours as punishment for my hubris. That is thing number 2 to understand about fatigue: Mental exercise is just as taxing, and just as damaging, as physical exercise.
I’m gonna leave it there. There is plenty more to know, but to tell you would be boring, and self-indulgent, and I am neither of those things. Your understanding of fatigue is now, lets say, “adequate”. Thanks for staying till the end.
This is pretty much the reason why I haven’t posted in a very long time despite having a large number of things to post about. I’ve commenced a new isolation diet that has been helping me somewhat with my energy levels though, and am hoping to resume posting occasionally with that fresh vigor. There is lots of catching up to do.










