One of our ways of explaining

While this was written by way of explanation of some of what people might see if they see my sons, please feel free to adapt it if it might be of help for you.

If you see my sons and don’t get much reaction from them:

They are not depressed.

Please understand that one of their coping mechanisms is maintaining an even keel.

Showing emotional highs and lows, even in greeting someone, uses too much energy for them.

They are not being rude. They are not sullen. They are not displeased. They are not ignoring you.

They appreciate you. They appreciate your presence, involvement, support… But they don’t have energy to show /convey that.

If they make eye contact, that’s acknowledgment.

If they manage a raised eyebrow, a tiny upturned corner of the mouth, the slightest nod of a head – that is huge. And to do that, they must be feeling pretty good (relatively speaking of course).

You may notice a fair amount of non-verbal communication between us. It may be our heads touching, hand on a shoulder, a goofy look from me…. We have developed a shorthand that between us that requires less of their energy to convey and process. It is usually easier for them to talk with me because we have shared so much of this wretched ME experience together and they don’t have to give as much detail or explanation.

Five days into one crash, one of my sons was (still) feeling that breathing was not automatic, that his brain was barely functioning at all.

And yet making the conscious effort to breath requires cognitive exertion and cognitive exertion further exacerbates the crash…..

Don’t ask him to make decisions – he just can’t do it.

Don’t expect him to have ideas.

He may be able to say yes or no to an option but not be able to come up with a substitute if his answer is no.

Don’t be surprised if he “zones out” mid-sentence, mid-bite, mid-word. It’s as though the brain gets stuck, on hold ………


Additions from LD

If their response is very succinct, it may well be because they are trying to cope with pain, don’t have energy to explain in depth….

It is often best to ask only 1 question at a time.  2 is too (2!) many.

Just because they “look” fine, does not mean that they feel fine.

If they wince when you hug them, it is not because of you, it is because it causes them real pain.

If they leave an area, it isn’t because they don’t like the company – but it likely that there is too much noise, too much commotion, too much scent, it may be too bright, there may be too many conversations going on to track and by leaving the area they are trying to “last” and not crash.  Their senses go off the charts, way faster than yours do. They will come back if they can.

Don’t feel badly, if they cancel on you at the last minute (or seem to ALWAYS cancel plans) – they don’t know minute to minute, let alone day to day, how they will feel.

Don’t be surprised if they say they feel fine. This is all relative. They always feel “bad” – just varying degrees of it. So if they say they feel fine, it likely means they feel about at baseline, about their usual and not their worst.



2 Responses to “One of our ways of explaining”

  1. 1 Jocelyn June 3, 2013 at 12:30 am

    This is genius – shared on fb. I identify with pretty much every line, and it’s one of those things that so much a part of my life, and so much *not* a part of the lives of people who don’t have ME. or don’t interact with me on a regular basis, that I forget that they don’t know it, and once I’m fried from trying to interact, the gulf of explanation is almost impossible to bridge.

    • 2 speakupaboutme June 3, 2013 at 12:59 am

      I am sorry it resonates with you because I am sorry anyone lives with ME. 😦
      I am glad though that you understand and that it speaks to you. Thanks for sharing it. 🙂
      We get accustomed to these horrors being part of our lives and many others have not idea what it is like.
      I think I am going to just hand a printout of this to people when they glare at us for what they perceive to be bad manners, etc but what is actually desperation to cope.
      (I hope that anyone who this will help will use it and or adapt it.)

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s