My tooth really hurts. I haven’t seen a dentist in a long time. I’ve been procrastinating, but also just haven’t been able to see a dentist when I was really severe.

And I think this brings up a really difficult thing we all have to deal with living with ME/CFS - a decision - balancing medical issues that aren’t related to ME/CFS, or ignoring those medical issues so we don’t use too much energy and get worse from ME/CFS.

And it’s always such a difficult thing to do. ME/CFS is full of decisions where both options are going to make us worse. I’m sure you all are very familiar with this, even if you have mild ME/CFS. You’re always deciding between trying to take care of yourself and use energy, and that doesn’t have to be a medical issue. It can be a mental health issue, and that includes seeing family and friends, just taking care of yourself in every way. And that uses energy. Or not using energy and trying to stay more healthy with ME/CFS and your symptoms and not crashing.

But the world is unpredictable, we never know what’s going to happen, we can’t control the world. So we can never really make a great decision about any of these things.

But medical decisions are even more difficult because we’re not doctors. So we’re trying to think about what’s going to happen if I ignore this medical issue completely. How serious is this medical issue? What’s going to happen if I wait to see a doctor until I’m maybe more healthy with ME/CFS?

And we can sort of use AI to figure that out a little bit, but sometimes not. And then on the other hand, we’re thinking about what’s going to happen if I go out into the universe. We have this contained bubble we’ve created in our rooms or housees that’s predictable in our rooms, or our houses. But out there, in the world, it’s crazy.

Not tornadoes and hurricanes and tidal waves. I mean, that could happen. 😊 But I’m talking about just someone walking in the room unexpectedly - that could make us way worse. And it’s so hard to decide because of this unpredictability.

I picture trying to make these decisions, especially when I was really severe and I was just trying to decide: do I try to communicate something with my signs and little things placed around me like arrows pointed at what I need, etc, or do I go without what I need?

I’d sort of picture the decision making process as two trees, each option being a tree trunk going out in front of me. And then I'd try to think about everything that could happen if I made one decision, and then everything that could happen from that decision, and everything that could happen from the next decision, etc.

So there’s all these branches going out because you make a decision, and then something happens from that decision, and something else happens from the next decision. And so it’s like this cascade happens.

It’s sort of like a tree that goes out, and there’s all these branches of possibilities. And I try to map those possibilities out in my head and look at both options that way, like a tree, and then sort of weigh the leaves, weigh out the branches 😉😊. And that’s really the best you can do with any of these decisions, but especially a medical decision - they’re even more difficult because we often just don’t know as much.

And we often can’t think that well due to brain fog or other cognitive difficulties from ME/CFS which adds another layer of difficulty to any decision.

Ultimately, the best we can do is think about it, try to make an informed decision, but then forgive ourselves. Because every time we get worse, it involves a choice to act. A choice to use energy. But we have to use energy. We can’t just lay here and rot. That’s not an option. We have to use energy.

So ME/CFS is full of these choices that wind up making us worse. It’s really hard not to lay blame on ourselves because there’s always a choice that led to crashing.

Always.

But we have to sometimes get worse, and we also make mistakes. And it’s really ME/CFS that’s causing this whole situation. It’s not us.

I’ve written about that before, but it’s really important to remember that it’s not us that is causing this. Whatever happens, however much worse we get, we didn’t cause it. ME/CFS caused it. You didn’t cause it. It’s not your fault. It’s ME/CFS.

Sending love to you all.  💙
Whitney