Difficult Day

There is no single shape to it. Any mixture of the following counts, in any combination:

• Symptoms louder than usual — pain, nausea, a heavier body, more brain fog
• Frustration — at the body, at the day, at the plans it is eating
• Loneliness, or a low tolerance for conversation that usually would be welcome
• Plans falling apart — the thing today was supposed to hold, gone
• Feeling overwhelmed by small tasks, each one ordinary, all of them together impossible
• Uncertainty about what is causing it, which can be its own kind of tiring

None of this needs to be categorised before it can be responded to. A day does not have to be PEM, a crash, a flare or a deterioration to deserve a gentler, smaller version of itself — and calling it any of those things, if the fit is not clear, is optional rather than required. The Crash & Flare Support page is there if that is what today turns out to be; it is not a gate this page is guarding.

Written for a foggy head: one line each, answer any of them, skip the rest. They sort the day without demanding much thinking:

• What is hardest right now?

  Name one thing, even vaguely — pain, noise, a task, a feeling.

• What actually needs doing?

  Not everything that is waiting — the smallest number of things that genuinely cannot wait.

• What can wait?

  Almost everything, usually. Waiting is allowed without an apology.

• What could be smaller?

  The meal, the shower, the errand, the conversation — the reduced version of it is a real version.

• Do I need quieter, simpler, less?

  Lower light, fewer messages, no talking for a while — less is a direction, not a failure.

• Is there one person I can ask?

  One task, one person, one message — that is the size of ask today can hold.

A difficult day does not have to be solved before it can be made more manageable.

Not steps, not a plan — just the smaller versions of things, any of which is allowed to be today's entire achievement:

• Simpler food — whatever needs no effort, at whatever time hunger shows up
• Admin postponed — most of it genuinely keeps, whatever the reminder emails imply
• Notifications muted — the phone can be a device that serves you today or a device that asks things of you
• One task handed over — “could you deal with this one thing?” is a complete request
• A conversation shortened — “I can't do a long call today, but I'm glad you texted”
• One priority only — chosen, done or half-done, and then the day is allowed to be finished
• Staying with basics — rest, food, drink, comfort, and nothing owed beyond them

Frustration, low mood, loneliness or worry often show up on difficult days, and they are worth acknowledging honestly rather than smoothing over. They are also not the cause of the physical symptoms — a difficult day is not evidence of a difficult attitude, and the feelings that accompany it are a response to a hard situation, not an explanation of it. The Emotional Landscape page covers the emotional side of this illness properly, for days when reading about it is affordable.