Sandi’s tired tale

It’s a battle many people with auto-immune diseases share. It’s part of the disease, but we don’t generate energy the way healthy people do, so we must be especially careful with the little we have.

It would be great if we could hoard it, saving some back for special occasions. Sadly, that’s not how it works.

A nurse gave me the best explanation I’ve ever heard.

Every day we are allotted a certain amount of energy in our personal bank account. We need to spend our energy wisely to keep from overdrawing our account, because the overdraft fees are brutal.

If you’ve never had a waking blackout, good for you. It is horrifying, especially the first one.

When I was a movie critic I traveled nearly every weekend.

I live in the middle of the country, so I was always going to one coast or the other to see early screenings of movies and to interview the cast and crews. Those time changes were often brutal, because it meant I was seeing movies at least an hour later than I did at home, or worse, I was doing interviews hours earlier than I did at my office. 

Having your schedule messed up like that all the time will take a toll. 

There was one dreadful movie junket, just before the holidays in 1995. Movie studios would band together and combine their movie screenings and interviews, saving money on getting the press there.

We writers could get numerous original stories for all the big movies to run the day the movie opened in our particular market. This one trip had seven movies and seven sets of interviews.

We flew in to New York City on a Friday and flew home Sunday night. I watched one movie before I left. That meant we saw three movies back to back to back both Friday and Saturday nights. We got back to our hotel rooms well after 1 a.m.

Thank heaven the hotels we stayed in had 24-hour room service.

That Saturday, we started interviewing at 7 a.m. and interviewed stars straight through until 5:30 p.m., when we boarded buses to see three more movies.

Print press shares interview time with six or seven other reporters and we got the stars and directors for 20 to 30 minutes. All the reporters asked questions during these interviews and we used all the information to write our stories. 

Sunday held three sets of interviews, then a trip to the airport for the flights home.

The second set of Sunday’s interviews was for a movie named “Restoration.” The only interview I wanted was one with the main star, Robert Downey Jr.

I knew I was exhausted, but I didn’t know how dangerously tired I was until the movie opened in my market over a month later.

At my desk at work, I got my tapes out and ran the cassette up to where I thought Robert’s interview would be, opened my notebook to the notes I made during the interview.

I started the tape. The voice didn’t sound right. What the guy said didn’t track with my notes. 

I was puzzled. 

I ran the tape forward a little more and found Robert Downey Jr.’s interview. 

I listened to the mystery man again and realized it was the director Michael Hoffman. 

He was in the room before Robert.

I had blacked out.

I have no memory of seeing this person. I didn’t write a single thing down while he was in the room, but my tape recorder had the cold, hard truth. 

I fought exhaustion and exhaustion won. It will, every single time.

Blackouts are one of your body’s way to keep you breathing. Your upper level functions shut down. It’s life support only. 

There are symptoms, but when you live with a certain degree of fatigue every day, it’s hard to tell when your systems start running in the red.

I found that telltale signs of imminent collapse include trouble following any conversation, clumsiness and an overwhelming urge to lay down exactly where I am and sleep for about 18 hours.

Since most of the time you can’t do that final thing, you need coping skills.

Sleep whenever you can, even if it’s only for 15 minutes.

Walk as little as possible. In New York City, I’ve taken a cab three blocks because I couldn’t face the walk.

Learn to say no. If you don’t feel like doing something do not do it. You are more important than any thing.

Rest as much as you humanly can.

Do not be afraid to ask people for help. I’ve found people like to help. I made that discovery soon after I discovered I was not from the planet Krypton and don’t possess superpowers.

I take every shortcut I possibly can to do everything.

I try to keep the balance in my energy bank in the black. Some days it’s harder than others, but every one of us discovers ways to survive each day, because the worst thing about the energy bank is there is no savings account. Energy doesn’t accrue, nor does it draw interest.

And finally, sadly, my energy crisis is real and ongoing and every day brings new challenges. If only we could discover alternative forms of energy for us.

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