A two-page instruction sheet version of this guide, ready to print or save as PDF.
Right now
Only these need any attention today:
- Prescribed medication, as prescribed — and whatever organises it so no thinking is needed
- Food and drink access — whatever needs no preparation and no sitting up, within reach
- A communication method that fits — messages, one word, or nothing until later
- Toilet and personal care needs — arranged or helped, not improvised
- Safety — nothing left on, unlocked or balancing that should not be
- A support person, if one is available and would genuinely help rather than cost
What can stop
Not “should” stop — can. These are not being neglected; they are being put down, for now, on purpose:
- Non-urgent admin and paperwork
- Replies to messages — a holding reply (“not well, will be in touch”) is enough
- Household tasks
- Optional plans, errands and invitations
- Unnecessary decisions — today runs on defaults wherever it can
Some people keep two or three short messages saved in their phone, written on a better day, so a crash never has to cost words as well as everything else. If composing even a holding reply is too much, silence is also a complete answer; anyone who matters will still be there when the day is over.
What may help practically
Where someone is available — partner, family, friend, carer — these are the things worth asking for or accepting:
- Essentials moved closer — drinks, food that needs nothing, phone charger
- Fewer questions, and quieter communication
- Reduced light and noise, where that is preferred — curtains, low lamps, one conversation at most
- Simpler food choices, already made
- Help with children, pets and the household basics
Nothing here makes promises about how long a difficult period lasts or how the illness behaves — the point is only that a difficult period can be made less demanding to get through. Rest today means exactly what it says: a day in which nothing optional is owed, and nothing on this page is a prescription for how the day must be spent.
What supporters should know
If someone else is reading this on behalf of the person who is ill — this section is the whole job description:
- One question at a time, and allow a long pause before an answer
- Do not expect long explanations — short is what today can do
- Do not assume less speech means less understanding
- Practical help is usually more useful than advice
- Respect preferences, even the ones that seem small — lighting, volume, who comes into the room
A crash does not always have a known trigger, and searching for one — “but what did you do yesterday?” — is rarely useful on a day like this. The My Support Plan page, if the person has one, says more about their specific preferences than any general page can.
My Crash-Day Support Instructions
Written on a better day, for the days when explaining is not possible. A supporter can follow this without asking me to describe things again.
A. When I am having a crash
A few words is enough — no symptom ratings. For example: difficulty speaking or responding; increased sensory sensitivity; unable to sit upright comfortably; needing help with essentials; difficulty processing questions; increased pain or other familiar symptoms.
What this may look like for me:
B. What helps me most
Not every option helps everyone — these are mine.
C. Please avoid
The things that add demand rather than remove it.
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D. Essential practical support
What another person should do — this is not a bedside inventory.
E. If I cannot communicate easily
For example: “Please ask one simple question at a time and allow me time to respond.”
F. What can wait
Non-essential demands to postpone, or hand to someone else:
Important distinction
A new, severe or significantly different symptom should not automatically be assumed to be part of ME/CFS or PEM. Appropriate medical assessment may be needed.
Supporter quick reference
The short version — ready to follow without me explaining.
If I am having a crash, please…
Kept where it can be found quickly — this sheet stands in for the explanations I cannot give on the day.
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