Coping Corner, Summer '97
Originally published in Youth Allied By
CFIDS, Summer 1997
Greetings from blistering Boston! Despite
the oppressive heat and humidity, I love this season! Summer is a time when
everything seems to slow down. Suddenly it's no longer unacceptable to flop onto
the floor for the day with nothing but comic books, bottled water and a stack of
pillows. We're no longer thought of as the lazy sofa-loafers that we may appear
to be throughout the rest of the year. There are peaceful evenings at the beach
and long shady moments in the grass with melting popsicles and a symphony of
crickets. And for some, summer means freedom: "No more classes! No more books!
No more attendance office's dirty looks!"
However you choose to spend the lazy,
days between now and autumn, I hope they're full of laughter and
For as long as I can recall, summer has been a time
of travel for my family. Whether we fly to Florida or just spend a weekend at a
beach cottage, we set aside time each year to get away. Since I became ill,
we've had to plan trips with a little more flexibility and a lot more down-time,
but CFIDS hasn't stopped us from leaving the house.
There are many things persons with
(PWCs) can do to make traveling easier - calling ahead to reserve a wheelchair
at an amusement park, or getting a hotel room with a fridge where you can keep
fluids, medications and medically appropriate snacks.
Often, the anticipation and planning
trip are more stress-inducing and tiresome than the actual journey. One thing
you can do to make things easier on yourself in preparation for the trip is to
have a packing and planning buddy. Choose a parent, sibling or close friend who
knows what you'll need to bring along and who can double- and
triple-check to make sure you won't get where you're going and discover that you
left your medication at home. This way, you'll be able to sit back and enjoy the
If You Plan It, They Will
In a few of my previous
"Coping Corners," I've talked about ways to make contact with the outside world.
For the bed-bound, who are looking for ways to reach out to their own
households, it can be something as simple (and fun) as walkie talkies, as
suggested by Sharon Walk. To keep in touch with your community, read the local
paper and take an interest in what the folks on the other side of the bedroom
walls are up to.
The arrival of summer presents us with
opportunity to touch base with some PWOCs… you know, those healthy people we've
been hearing so much about! During the school year, it's not always easy to stay
in touch with your pals. Those of us who are not in school are a world away. I
don't know about the rest of you homebound young persons with CFIDS (YPWCs), but
at times I feel quite isolated and neglected. "Out of sight, out of mind" seems
to hold true as friends get busy with sports and studies and rarely think to
call to say "hey" or fill me in on the latest gossip.
Those of you who attend school - whether
part- or full-time - have it equally tough. It's difficult to keep your head up
amidst the work and confusion of school and, although you're surrounded by your
peers, there is little energy and time left over for socialization.
We can all agree that falling out of
and dropping out of the swing of things is the easy part… the hard part is
knowing how to reach out and establish a connection once more. It seems to me
that there's only one logical solution:
A Colossal CFIDS
Not a celebration
of CFIDS, but a celebration CFIDS-style! If you're unable to join your buddies
when they head off to the park or to prowl the mall, why not invite them to come
Not long ago it struck me that YPWCs
have enough fun. It can be hard to come out when you're sick and tired. Who has
the oomph to party? Not I. Well starting now, this is going to change. We're
about to revolutionize the party scene. Fasten your seat belts, kids. And DO try
this at home!
choose to accept it: Host the best low-energy blow-out bash that ever
YPWCs just wanna
aside a couple of
hours some afternoon or evening. Figure out what time of day is best for you -
when you're most awake and able to function - and work around
to one or two of your pals. Don't invite a crowd… this can result in too much
noise and confusion and we want this to be a CFIDS-friendly
This is the
part where your creativity comes in. We all have different ideas about what
"fun" is. Here are a few thoughts on potential themes for your gathering, but
don't feel penned in by my ideas! Do what's fun for you.
- Mario Marathon: Are you a
Nintendo fan? Stock up on snacks, have each of your friends bring along their
favorite video game, and go wild!
- Go Glam! Can't do a thing with that
bed-head? Call some gal pals over for a beauty bonanza. Have some goofy
fashion magazines and funky shades of nail polish on hand. Lay back against
the pillows and let your friends make you over. (Note: Boys shouldn't feel
obligated to participate!)
- The Video Version: This is the classic
CFIDS Celebration. Rent a stack of videos - action, horror, humor, etc., bring
in the popcorn and the friends, and let the VCR do the rest.
- Tune Tutorial: It doesn't matter that
you can't get up to get down and boogie. Tell your friends that you've been
trapped on Planet CFIDS way too long with cheesy doctor's office music. Invite
them over to catch you up on what's hot in the music world!
Before you know it, you'll be laughing
loud and remembering what it feels like to have fun with friends! So what are
you waiting for? Make contact! And let us know how it goes. If you have ideas
for a Colossal CFIDS Celebration or ways to reach out beyond the bedroom walls,
send 'em in to "The Coping Corner"!