Dear Wellies
Thought you might be interested to see below the text of a draft handout done by a person with ME, intended for people he works with.
Anne-Marie x
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M.E. AND ME
I have an illness called M.E. (chronic fatigue syndrome)
I'm giving you some information about it because we're doing some stuff together and it affects the way I act.
The illness means that if I overdo it:
- I get cognitive problems- problems speaking, hearing, understanding and thinking.
- I get physically exhausted (a feeling more like being poisoned than being tired).
- These symptoms can be brought on by physical and mental activity and, confusingly, mental activity can cause physical exhaustion and vice versa.
To avoid these symptoms I do things for short periods of time and then rest for 20 minutes. Here are the times I can do at the moment before resting:
- one to one meetings - 45 minutes
- learning in a class 1 hour
- walking or standing up 30-45 minutes
- general chatting - 2hours
- office work 45 minutes.
In the short term I can exceed these limits but then I need to rest for a much longer time.
It helps me if you are able do any of these things:
- help me keep within these time limits
- not speak to me when I'm resting (you don't need to be quiet)
- put information in writing rather than tell me
- If we do have a meeting, write down the key points I need to remember about what you have said.
- Tell me if I appear to be making no sense or appear not to be paying attention.
However this is not a dramatic illness and I am in control of it. You will not have to deal with me collapsing on the floor or exhibiting bizarre behaviour!
Anne-Marie x
=======================
M.E. AND ME
I have an illness called M.E. (chronic fatigue syndrome)
I'm giving you some information about it because we're doing some stuff together and it affects the way I act.
The illness means that if I overdo it:
- I get cognitive problems- problems speaking, hearing, understanding and thinking.
- I get physically exhausted (a feeling more like being poisoned than being tired).
- These symptoms can be brought on by physical and mental activity and, confusingly, mental activity can cause physical exhaustion and vice versa.
To avoid these symptoms I do things for short periods of time and then rest for 20 minutes. Here are the times I can do at the moment before resting:
- one to one meetings - 45 minutes
- learning in a class 1 hour
- walking or standing up 30-45 minutes
- general chatting - 2hours
- office work 45 minutes.
In the short term I can exceed these limits but then I need to rest for a much longer time.
It helps me if you are able do any of these things:
- help me keep within these time limits
- not speak to me when I'm resting (you don't need to be quiet)
- put information in writing rather than tell me
- If we do have a meeting, write down the key points I need to remember about what you have said.
- Tell me if I appear to be making no sense or appear not to be paying attention.
However this is not a dramatic illness and I am in control of it. You will not have to deal with me collapsing on the floor or exhibiting bizarre behaviour!
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COMMENTS
Re: Example on helping people understand working limits
This is really great, I think I'll try something similar at my work. I've
finally got them to understand my ME a bit more and to help support me (its
only taken nearly 10 months!), isn't it amazing how they start to pay
attention only when the union gets involved?
finally got them to understand my ME a bit more and to help support me (its
only taken nearly 10 months!), isn't it amazing how they start to pay
attention only when the union gets involved?
Re: Example on helping people understand working limits
tHANK YOU VERY MUCH FOR THIS, IT'S BRILLIANT.
