Explaining PEM to others

[Dainty]

I recently attempted to explain PEM to a group of people. I don't know if I did a very good job, but it was the best I could manage.

I explained that the PEM in CFS is was forces patients to be "lazy", that is, to self-limit their activites in order to keep within their envelope of energy. If we overdo it, PEM is what follows. We look just fine during the activity, but when we overdo it the price is paid afterwards. I didn't think of this then but I should have said that it's like going into debt...you can purchase things just as easily as if you had cash, but you know you'll pay for it later.

I described PEM as "fatigue so intensely profound that it is very extreme suffering, even at rest. It is not simply "miserable", it is beyond imagination and you're just screaming internally because the level of suffering is unfathomably high, and yet you're so weak that it's all you can do to take the next breath."

I explained that when they first get ill, CFS sufferers usually have many attempts of trying to force their way through this, and they keep trying often for years until they are personally convinced that it cannot be overcome by sheer willpower. They learn, instead, to buget their energy, which in modern terms equates to "lazy", in order to have any semblence of living, and only give themselves the luxury of exerting themselves beyond that on special occasions. I made sure to mention that despite being forced to be "lazy" we're chomping at the bit to do something, ANYTHING, and gladly enjoy sometimes even mundane chores as our special treat that's worth the PEM backlash.

The group appeared to take it very well.

I know that most of us here consider PEM to be the hallmark CFS symptom. How would you describe it in your own words? How do you help people to understand?

 

[lucy]

I think it is worth mentioning to people that the fatigue types are different in casual fatigue and the one in chronic fatigue. I do not remember the source, but one patient was writing that if you compare the casual fatigue with a flame of a match, then the fatigue ME patients experience equals to atomic bomb. Maybe if it is a milder case it is comparable to casual fatigue. So in fact this is the biggest problem with the title chronic fatigue syndrome, people match the word fatigue with what they have experienced - and it could be tiredness when they are sleepy, or exhausted (and happy) after sports. While 'our' fatigue is something else and therefore it should have another name.

Once in a science night event in the city one of the companies represented their specialisation: equipment for elder people. To help visitors to understand how sometimes elder people move and feel, you had to wear a suite with weights, glasses which blur your vision and climb up the stairs they installed in the post.

It would be nice to have such 'information post' in one of the me/cfs related events to help visitors to understand at least partialy how patients feel. Partially, because they would need to be injected with something to reproduce the brainfog. (BBB opening medication?) To make the full picture, there should be a person telling them they look totally ok, it is a psychological suite The information post should also stress the duration of illness, which is rarely less than one year.

 

[ukxmrv]

Dainty,

I usually use the "spoons" explanation as a first attempt. Not sure if you have seen this

http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

(start)
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control
(end)


Another idea
If it is a small group of people I would ask them if any of their relatives had a long lingering death recently. Then I would ask them what the last 3 months had been like for that person. Recently I lost a relative through cancer. He was given a few months to live but during that time he could still walk from his home to the pub, have a drink and walk home. I can't do that. He lasted a lot longer than the few months - well over a year and it was not until the last 2 months that he became largely bedbound and housebound. When we called he could maybe talk for a while and then collapse. That's me. After this talk I will go home and collapse. I won't be able to make dinner or talk any more.