What a 3 actually means.

the felt-state score, in lived terms

The whole site rests on one hand-typed number a day, 1 to 10. But a number is meaningless without knowing what it stands for, a 3 here is not a 3 on a pain scale or a mood inventory. So here is what each level actually is, in my own words: not a rubric I score against (the score is a feeling, typed without consulting this), but the lived reality the number has tracked for four years.

The Dutch lines come first because they are the original wording, from my own notes at the time. The English under each is a gloss, not a rewrite.

1–2

Volledig uitgeschakeld

Fully shut down

Bed-based; pain or extreme symptoms. At 2, a little movement is possible.

1

Op bed, slapen of met heftige hoofdpijn etc. Gordijnen dicht, geen prikkels aankunnen.

In bed, sleeping, or with a pounding headache. Curtains shut; can't take any stimulation at all.
2

Kan van bed naar de bank, een kort gesprek voeren, korte stukjes van bed naar tafel oid lopen. Veel slapen overdag.

Can get from bed to the couch, hold a short conversation, walk a few steps from bed to table. Sleeping a lot through the day.

3–4

Grootdeels uitgeschakeld

Largely shut down

Limited activity, with active symptoms at 3, with symptom-free windows of an hour or two at 4. Heavy rest around anything.

3

Bij lopen e.d., snel een verhoogde hartslag, misschien een vaatwasser inpakken, even douchen, een korte wandeling buiten. Kan korte gesprekken over eenvoudige dingen voeren. Maar heb ook klachten als hoofdpijn, brainfog, duizeligheid etc.

Heart rate climbs fast when I walk; maybe I can load the dishwasher, take a quick shower, a short walk outside. Can hold short conversations about simple things. But also symptoms, headache, brain fog, dizziness.
4

Het grootste deel van de dag geen pijn. Zowel in ochtend als middag, blokken van 1 of 2 uur waarin ik helder ben qua denken. Kan geen serieuze inspanningen leveren. Ik kan een korte afstand lopen zonder daar lang van bij te moeten komen. Heb na elke activiteit ook even lang rust nodig (op de bank, kalmeren, ogen dicht). Maar moet ook nog ~2 uur slapen / dieper rusten in de middag. Kan meedoen met avondeten en heel misschien kids naar bed brengen samen. Dan ga ik om 21:00 slapen.

No pain for most of the day. Morning and afternoon, blocks of one or two hours where my thinking is clear. Can't make any real exertion. I can walk a short distance without needing a long recovery. After every activity I need an equal stretch of rest, on the couch, calming down, eyes closed. But I still need ~2 hours of sleep or deeper rest in the afternoon. Can join dinner and, just maybe, help put the kids to bed together. Then I sleep at 21:00.

5–6

Deels uitgeschakeld

Partly shut down

Pain-free, family-functional within strict pacing windows, about four hours of light activity. The difference between 5 and 6 is whether anything is left by evening.

5

Geen pijn. Kan na het opstaan meedoen met het gezin. Maar koken einde dag is iets wat vooraf gepland moet worden ten koste van iets in de middag. Gedurende de dag elke 20 min tussendoor steeds rusten. Kan in de ochtend en middag, met rust tussendoor, in totaal ongeveer 4 uur iets doen met niet teveel prikkels of te zware inspanning (vb. licht werken achter computer, wandelen, koffiedrinken etc.). Lichamelijke inspanning met licht verhoogde hartslag kan kort, mits daarna voldoende rust en niet te vaak per week. Ga om 20:00 naar bed en om ongeveer 21:00 slapen.

No pain. Can join the family after getting up. But cooking at the end of the day has to be planned in advance, at the cost of something in the afternoon. Resting every 20 minutes throughout the day. Morning and afternoon, with rest in between, about 4 hours total of something light, without too much stimulation or heavy exertion (light computer work, walking, a coffee). Brief physical exertion with a slightly raised heart rate is possible, if there's enough rest after and not too often a week. To bed at 20:00, asleep around 21:00.
6

Zelfde als op niveau 5 maar dan aan het einde van de dag niet uitgeput. Waardoor of in de avond ook de mogelijkheid om rustige gesprekken te voeren, een film te kijken samen of andere rustige dingen te doen. En dan om 22:00 naar bed.

The same as level 5, but not exhausted by the end of the day, which leaves room in the evening for quiet conversations, watching a film together, or other calm things. Then to bed at 22:00.

The ceiling is a 6

In four years and more than 1,370 logged days, the score never once rose above 6. Levels 7 to 10 have no lived definition here; they've simply never been used. The top of my range is 'functional, with strict pacing', not anything a healthy person would call a good day. That compressed upper register isn't a quirk of the scale; it's the lived experience.

What this anchors, the crash threshold

The crash definition the whole site turns on rests on exactly these levels. A crash is a score of 3 or lower for at least two days running, read against the scale above, that's 'largely or fully shut down, with active symptoms, for two days or more.' The threshold isn't a statistically convenient line drawn through the data; it's the lived shape of a crash. See what counts as a crash.

Why there's no 'good day' to compare against

A healthy person's ordinary day would sit at 7 to 10, and those never appear here. So the analyses never ask 'good day versus crash': there is no good-day end of the scale to ask it with. 'Normal,' in this record, already means functional within a narrow envelope. It's also why the same number means different things on different bodies, a 5 here is a real, hard-won day, not a healthy person's 5.

These are the participant's own words, published as authored. The Dutch is the original voice; the English is a gloss for English-language readers. gevoelscore_lived_definitions.md ↗