Thoughts on the concept of P.E.M. or crashing…

Has anyone with M.E. ever had a friend or family member "get" or understand P.E.M. (post exertional malaise) or crashing?  I figure it must have happened to someone, I'd love to hear stories.

Over and over and over again I  have the experience of non-M.E. sickies not getting the concept.  For example, if I say I'm crashed or ill, when they reply, they say "oh you're tired?"

I have had M.E. for over 12 years, and everyone close to me in my life has been told by me innumerous times that an M.E. crash is like having the weakness and symptoms of influenza or a bad cold virus.

It's like being extremely weak and ill (sore throat, swollen glands, dizziness and even fevers sometimes).  It is NOT the same as tired or worn out.  Not that tired isn't an element, but it's more akin to the weakness and exhaustion of a severe virus.  But I could be a broken record, and it seems it doesn't make a difference. Some folks will forever think I'm experiencing "tired", like a healthy gets, rather than "sick".

In a similar vein, it seems there is far more encouragement from people in my life to do more, not less.  Imagine if every time you had an outing out of the house, or tried to do a task, 36 hrs later you endured the equivalent of influenza?  I don't think if someone experienced or really listened and understood this, they would encourage me to push.

Case in point, I went through most of July, all of August all of September, and into early October, before I had a day where I didn't feel absolutely horribly ill.  In part, it was the travel I did in August and early Sept. I did it, I toughed it out, I managed.  Maybe that's all people see from the outside.

It was so bad in September, I was so tired and fed up with being ill, and disappointed in how little I could manage, that I wanted my life to end.  I didn't want to live another single day that ill.  Then around mid October, after being home over a month, I had a better day.

I mean ultimately it's up to me.  If I want to down grade the suffering, I have to avoid pushing.  Live like a monk, never do more than a few small tasks a day.  One short outing a week, otherwise homebound.  This way I can avoid the worst crashes. But it would be nice if, a little more often, I felt supported in this from the outside, felt that someone else thinks it's OK for me, or anyone who's chronically ill for that matter, to avoid crashes even if it means we're not "doing", "producing" etc.

Beleive me, it's hard enough to remind myself that I still have some worth outside of my productivity, my activity.  I'm pretty sensitive about how useless I am, (or feel I am).  And I've always been an active "busy' person, so NOT doing is already torture.

Let me throw in here,  that there are the few odd times certain people do urge me to not push.  And I find, for example, if it's my roommate/friend, that it gives me a feeling of support, as well as a reminder.

My mom, on occasion has also mentioned "Don't overdo, you know how bad it can get." At the same time, if I'm visiting them, and I spend most my time in bed, she says, "You don't like spending time with us."

Also, I have a friend reunion coming up and a couple of those friends, knowing how terrible the fall was for me, have been super understanding about me coming only if I'm well enough.

My old specialist was a huge proponent of pacing and resting.  While she didn't have M.E. she was able to see over and over what happened to those who didn't learn to pace.  She told me once if I didn't take better care, I might end up in a nursing home in my 30s…because she'd seen it happen.

Do your friends or family members ever encourage pacing and resting, avoiding P.E.M.?  It must be hard from the outside to see someone you love just laying around all the time, cautious to ever go out and "do things".  As a friend or family member, one must wonder if the person with M.E. isn't just a little lazy or overly cautious, whether it's really that bad and not in some part a "mental" issue.  I mean they even look well.

Another pet peeve I have is when friends start using the word "crash" when talking to me about how "tired" they are in their own lives, once again demonstrating that they think "crash" means really tired, rather than really ill and weak. So now I try now to use P.E.M., or "I'm having an M.E. crash."  I can still feel empathy for others who get downright exhausted living their lives.  It's just that P.E.M. or crashing is a biological immune reaction to activity and not - really tired.

According to research thus far, M.E. is the only illness that shows biological abnormalities in metabolism, heart function, and the immune, and nervous systems 24 and 48 hours after exercise.  This is not the same as being "tired".  Basically when we, people with M.E. are active, 24 hours later our bodies react, releasing immune cytokines similar to those released when someone has a virus.  So P.E.M. or crashing, really is like being sick.

So on a very positive note, I have some GREAT news about my health to report.  However, at this point I'm going to leave this as a teaser.  The treatment seems to have made a big difference (quite drastic in fact) for a week now, but I don't want to find out that the changes are some kind of fluke.  So next week, if the improvement continues, I'll report on the treatment that is responsible.