Hello to you,

We have known each other for a long time and you know that I live with this disease. You are familiar with many of the symptoms, but there is something that is hard to explain. I am tired. Yes, it sounds strange—in the 21st century, we are all tired all the time—but this is different. It is so difficult to explain, and perhaps that is why I haven’t spoken until now. Your fatigue and mine might have the same name, but it is something else entirely. It doesn’t go away and it affects everything: what I do, how I think, what I feel. When I sleep or rest, it doesn’t mean I will feel more alert afterward. What I do know for certain is that energy is a rare commodity. So rare that I must use it wisely and sparingly.

It is not within my control; it is simply part of the illness. Sometimes it is a result of the medications, or a side effect of the pain. Sometimes it’s because I didn’t sleep enough, eat enough, or drink enough—but usually, it just comes for no reason at all. It is hard for me to talk about it because there is a feeling, not necessarily because of you, that it isn’t “legitimate” to say I’m tired. Because of this, I’ve found many similar excuses like “I don’t feel well” or “my legs hurt,” because I thought those were easier to understand. I didn’t want to hide it; it’s just hard to explain.

You cannot imagine how I see things, how I analyze actions that need to be done. Someone who doesn’t suffer from fatigue is blind to all the actions that happen automatically, but for me, every movement consumes energy. Preparing food means thinking about it and planning: getting up from the couch and walking to the kitchen, opening the fridge, taking out the utensils (and even then, the plan is to make whatever requires the least energy), starting to chop, to cook—heating is the worst because heat only worsens the fatigue. You probably didn’t notice, but everything is done while standing; yes, standing wastes my energy. I just hope everything goes smoothly, that I don’t forget something in the fridge and have to go back, that everything goes according to plan so I don’t have to stand too long, and that there aren’t those packages that don’t open easily—at that moment, I’d give a prison sentence to whoever manufactured them. Cleaning the dishes or the counter? I certainly won’t deal with that, but putting back what must go in the fridge—there is no choice. I’ll sit down to eat, but it doesn’t end there. You might not notice, but eating consumes energy: lifting, cutting, chewing. That’s just the beginning. Now comes the breakdown and digestion; in my body, everything is felt. Sometimes I can see in my mind’s eye how my energy clock is running out. I finish the meal with the last grains of energy; there have been cases where the clock caught up to me and I quit before I was full. Afterward, it’s only the bed—I can compromise on the couch—but you can forget about clearing the plate. That’s it, it’s over! I know everyone is a bit more tired after eating and it’s that time of day when tension drops, but I feel like I’ve finished a marathon, only in my humble home there is no podium and no medals. All I wanted was for people not to think I’m lazy or egoistic; the fatigue simply overwhelms me.

This is why I have less desire to host or go out; it requires so much energy. But I don’t want to be alone. I stayed who I am, just more tired. Our plans need to take this into account and be more flexible. It could be that I’ll want to sit, rest, maybe lie down. I probably won’t join long walks—you know what, I likely won’t join them at all. But I can travel, sit, join for meals. Tell me how it was, because these trips are just an excuse to be together, and I don’t want to give that up. I have no problem giving up on a photo from the mountaintop or dipping my feet in the stream, but being with you, sitting, sharing, talking—that is the most important thing.

It’s probably still hard to understand. You know, I don’t fully understand it myself; it just lands on you. Don’t overthink it too much—ask me and I’ll tell you I’m tired. Suggest I sit or lie down and we’ll continue as usual. Now that you are familiar with the fatigue, you will surely see for yourself how it affects me. I hope you understand.