Thinking at Half Speed

Today I did a fatigue assessment. The Fatigue Severity Scale — nine statements, each scored 1 to 7, where 7 means strongly agree. The clinical threshold for significant fatigue is a mean score of 4. I scored 7.0. Every question, 7.

The scale was designed in 1989, primarily for MS and lupus research. Its job was to tell the difference between fatigued patients from healthy controls. It does that well. What it can’t do is tell you anything useful about someone who has been at the maximum for eight years running.

I couldn’t even do the assessment unaided. I had to have the questions put to me one at a time, because reading nine statements and holding them in mind long enough to score them was too much. That’s not a complaint about the scale. It’s just an accurate description of where things are.

There’s a particular kind of awfulness to extreme fatigue that I don’t think gets communicated well by numbers. It isn’t just tiredness. It isn’t the feeling after a long run or a bad night. It’s lying still, unable to sleep, unable to read, unable to hold a conversation for long, unable to do almost anything — and yet not getting any rest from it. The fatigue doesn’t switch off when you stop. It’s just there, all the time, as a baseline.

Eight years at maximum score. Not eight years of bad patches. Eight years of this being the floor.

The FSS still has clinical value for me — “maximum score, consistent for eight years” is an unambiguous statement in a letter to a consultant. But as a tracking tool it’s useless. There’s nothing to track. The number doesn’t move because the condition doesn’t move, not in that direction.

What I find myself wanting isn’t a better scale. It’s medically induced sleep. Just a break from being awake and exhausted at the same time. That’s not a dramatic request. It’s a practical one. And it’s going on the list for my next appointment.

If you’re reading this and you know this feeling — the specific misery of lying there in that state, not falling asleep — then you already understand what no scale can really capture. And if you don’t know it, I hope you never do.