Archive for July, 2007

Is There a Newsletter?

Tuesday, July 31st, 2007

Nope!  This more clickable, easily accessible topic-oriented site provides easy access to up-to-the-minute information and is far easier for us as a group to manage.   

 Check back regularly for the latest news and information!

Be a “Clutter-Free Zone”

Sunday, July 15th, 2007

It’s now common knowledge that clutter is troublesome - the stress of misplaced papers, the visual noise, etc., humbles even the healthiest of people.  For us, it can become an all-out energy-zapper!  Keeping one’s environment clutter-free can go a long way toward peace and manageablity.

Heads-up!  Getting rid of clutter is the topic of one of our upcoming monthly meetings, and we’ll have a professional there to speak about it.  Be sure to check the Calendar regularly for details!

Accept Help

Sunday, July 15th, 2007

Let’s face it: while we may have been dynamos before this condition, we simply cannot do all the things we used to do.  So don’t even try! 

It’s not fair to ourselves to push like that, and getting some backup for the basics frees us up to heal and stay in the stream of life.  It also frees up energy to help others with areas in which we’re strong. 

What has worked for you?  Email us - we’d all love to hear it!

Communicating with Others

Sunday, July 15th, 2007

It’s well-known that one of the most frustrating things about our condition is the fact the we generally appear to be fine - though we and anyone who knows us are well aware that this is far from the truth.  It can help to have a couple of phrases in one’s pocket to help convey to others how what we really experience, what’s really going on.   Do you have some that work?  Email us - we’d all love to hear it!

General

  • “Its like have the flu 24/7/365” or “Its like having the flu all day every day all year” - Jane

Brain Fog

  • It’s like you feel when you’re waking up from anesthesia.”  - Mary

Fatigue

  • “It’s neurological, on the continuum of paralysis as opposed to ‘being tired.’” - Lisa

Managing Your Activities

Sunday, July 15th, 2007

Our condition often has a “mind of its own” when it comes to being able to plan our calendar and activities.  Here are some ideas and suggestions for staying engaged without adding any pressure.  Have anything that’s worked for you?  Email us - we’d all love to hear it!

  • Write “committed” or “tentative” on my calendar then stay in bed or rest at home a day or two before the commitment. I have told everyone I know and everyone I meet whether it is committed or tentative when they ask (other than doctors they are always committed). That way if I have to cancel no one gets offended.

- Jane

  • I keep close track of my energy levels on a daily basis.  This gives me an idea as to what time(s) of day I’m likely to be at my best, so I can schedule activites during those periods (and block out times when I know I’m likely to be “down”!).

- Lisa