There is a lot going on, spread across a lot of separate appointments. It seemed like it might be easier to see if it were written down in one place, sorted by what it is about and how soon it matters, rather than held in your head.
That is all this is. A list, arranged.
Everything here started from something you said, gathered into one place and sorted. It is a starting point rather than a medical opinion, and it is yours — reword it, remove what does not fit, disagree with any of it.
The people treating you are the ones who can say what is right for your body. This is here to make those conversations easier to have.
The chapters
Getting around the houseShortening the distances indoors, and which journeys could stop being necessary.
Getting outsideThe door lip, the ground, and the heat.
Food your body can useFormula, the gut, and the October appointment.
Help with costsProgrammes that exist for this, and what they cover.
Your joints, one at a timePain relief first, then what to ask about for each site.
SleepPositioning, and what might be worth ruling out.
Carrying thisTherapy, other people with hEDS, the volunteering.
The whole pictureThe hEDS side, and the things that get missed with it.
Anything elseEmpty, for whatever you want to put there.
Within each chapter, things are grouped by how soon they matter — start here, next few weeks, over a few months, further out. That ordering is a guess, and it can be changed.
How it works
TodayThe things furthest forward, gathered from every chapter. The place to start on a hard day.
The planAll of it, by chapter. Open one, leave the rest closed.
NotesA line a day, whenever it is useful. It builds into something you can hand to a doctor.
GrowthWhat has moved. And a button for when you want exactly one thing to look at.
MarkingEach card cycles through Trying, Done and Not now. Not now folds it away — tap again to bring it back.
Changing itEvery card can be reworded or removed, and you can add your own. It is your list.