The first Lupus
Chat with host, SunE1, was
held 10-27-2003. The chat focused on fatigue that accompanies
Lupus. Even though this particular topic applied
to Lupus, the concepts for dealing with fatigue can
be applied to any condition.
Below are the highlights from SunE's chat. Lupus
is a chronic inflammatory disease
that can affect many parts of your body, including your
skin, joints, kidneys, blood cells, heart and lungs.
Episodes (or flares) tend to come and go throughout
our life and cause us to feel overly worn out, tired, and achey.
At times we become so tired that we just cannot
go on without taking a rest. This is the fatigue that affects almost every
Lupus patient.
According
to the Centers for Disease Control and Prevention, lupus
affects about 1.4 million Americans, and most of them
are women. There are several types of lupus, but systemic
lupus erythematosus (SLE) is the most common and the
type that causes the most difficulties. It can lead
to problems ranging from fevers to swollen joints to
anemia to kidney failure.
Regardless
of whether we're in a flare or not, it is extremely
important for us to get plenty of rest. I've often been
told that getting the right amount of rest is the best
thing we can actively do for ourselves. Our bodies will
even tell us that we must get rest.
The
most common and almost constant symptom that the SLE
patient reports to her physician is fatigue. The
fatigue of Lupus isn't just being tired. It is
so much more than that. It is waking up each morning
feeling no more rested than when you went to bed. It
is so severe that it impacts almost all aspects of a
person's daily life.
According
to National Institute of Arthritis and Musculoskeletal
and Skin Diseases, (NIAMS), the exact cause of this
fatigue is unknown. They advise for SLE patients
to do the following :
1.
Get enough sleep. You may be able to get by on 8 hours
a night, or you may need more.
2.
Plan for additional rest periods throughout the day,
as needed. Do not exhaust yourself.
3.
Getting enough rest does not mean no activity at all.
A well-designed exercise program is important to maintaining
strength, endurance, and overall fitness.
4.
Every week, make a simple plan of your work and activities.
The plan can help you organize the events of your life
and ensure that you have a good balance of rest and
activity.
5.
Each day, review your plan and decide if you are physically
up to the activities for that day. Be flexible; if you
don’t have the strength to do an activity today, do
it another time.
6.
Don’t try to complete a large task or project all at
one time; divide it into several steps.
7.
Eat a well-balanced diet.
8.
Dealing with stressful issues and problems takes a lot
of energy. If you feel stressed out, talk with your
doctor or nurse. They may be able to provide you with
help for your problem or direct you to someone else
who can.
NIAMS
also states, that it is important to remember that getting
enough rest, maintaining physical fitness, and keeping
stress under control are absolutely necessary for anyone
with lupus.
Suggestions
for reliving stress are yoga, reading, support
(from family and groups), finding interests outside
of ourselves, such as volunteer work. Focusing on ourselves
can cause even more stress. Finding an outlet
can bring not only relieve stress but bring joy to our
lives.
Written
by: SunE1, Oct. 2003
Sick
Bay
JenHurt, our UK Chat Moderator,left for Ireland on Friday, 7 November. She
is undergoing special treatments for her condition that
causes her so much pain. CLICK
HERE to read her story. She's just 23 but
has suffered pain for so long!
She will be unable to
access her eMail while she is away, but it would be
so nice for her to return to oodles
of eCards and eMails. Here's her addy: jenjen@buffyuk.org
Rex, one of our long time members,had
a stroke in August. He would love to receive eCards
and/or eMails from his friends. Rex's dad is helping him with reading mail. So
please send to Rex with a copy to his dad, their eMails
are below:: Rex's eMail: rexgardner@hotmail.com
and Rex's
Dad: billg@elkobroadband.com
Rex
joined us for a chat last week, his dad typed for him.
It was nice to be able to give him the "hugs"
he needs right now. If you are a close
friend and would like to send a paper card, contact SunE1 for
Rex's address at: sune1@ChronicPainSupport.org.
DragonRider
Bit the Dust!Patrick
(aka Dragon) was on the way home from work when the guy
behind me bumped his rear tire and sent him into the
car in front of him. Dragon (the bike) landed on Patrick's
ankle breaking it (distal fracture of the tibia).
In
the words of Patrick
"The Dragon is dead... the engine head is cracked
and the frame is bent, better
good memories than attempt reviving an old friend
who won't be the same." ...... "I'm still looking at the right side of the
grass and there's another
Dragon waiting for me out there someplace. (Or
maybe a mustang convertible!)
LOL
"
Dragon
will spend three weeks in a vented short leg cast then a
real cast for a much longer period. Check
the message board for updates on Dragon and post
a message of support.
Please note!
Any information you read on the web,
including our web site, message board, chat
rooms, or news letter, should not replace
the advice of your health care providers.
CPSG
Move to MSN
CPSG Move from Delphi to MSN Our move to MSN is well underway and
with very few glitches!! We began posting to MSN
October 7th and by the 14th we were ahead of schedule
for getting members moved.
Thank
you to all our Delphi members who loyally moved
with us to MSN, we realize that it was a bit stressful
and appreciate you for sticking with us . We also want to welcome
all our NEW members who've joined us at our new site.
Our hope is that all of you find CPSG
to be a safe and supportive haven from your chronic
pain. After all what would our group be without all
of you?
Currently the Delphi site is
in a "moderated
mode", where each message is sent to a private
area for review. This makes it quite easy to find
out who is still posting to the old site and send them
an eMail to invite them to our new
site.
The Dephi
site will be placed in a "Private
Mode" on November 14th. Only a select few
staff members will have access to the old site. MaryL
(Reed53) will be working to transfer important information from Delphi
to MSN. Please remove any private information
from Delphi site prior to 11-14-2003.
Click Grpahic to go to New Site.
Chat
with Us!
We
have several topical chats as
well as many general chats on our chat
schedule. Below is a listing of the topic chats:
SunE1
Hosts a Lupus Chat
When: Every
other Monday (next
chat 11/10/2003) Time:
9pm
ET - 10pm ET
RaggedyAnne
Hosts a MS Chat When:
Every other Tuesday (next chat 11/11/2003) Time:
9pm ET - 10pm ET
JenHurt
Hosts a UK Chat When:
Every Wednesday Time: 9pm UK (3pm
US ET)
JJ
Hosts FM/Chronic Fatigue Chat When:
Every Friday Time: 9pm ET
Rich's
Morning Chronic Pain Chat When:
Every Tues & Wed Time: 8:30am
ET
To see the entire chat schedule
on our calendar, click
here.
New
Volunteers!
In a
recent Group News e-mail, we asked for volunteers. Three
members replied. We're very happy to announce
the following members are joining our group's volunteer
staff:
Belle - Chat Moderator
HartPsalm - HTML Editor
MaryL(Reed53) - Delphi
data transfer and
MSN Lists Coordinator.
It takes a special person to volunteer when they
have home responsibilities and fatigue from their pain
and chronic illnesses. We appreciate all our volunteers.
Help us show our new volunteers that they
are appreciated by posting a message
on the board with a personal word of thanks or by
sending a Sun-E-Card.
CLICK
HEREto
find out who received the volunteer of the month award!
Social Security Disability
- An online handbook which outlines
the
steps for applying for SSD.
A must read
for anyone planning on applying
for disability.
NeedyMeds.com
- Assistance programs for those who cannot afford their medications. There's
links to more than just medication assistance programs. Some good information
here.
Check out our list of Medical and Rx resources. Click
Here!
!Are you a writer?We welcome all articles dealing with chronic pain. If you wish to write an article, contact SunE1 with your topic idea. There's no requirement to know HTML.
/If you're not on our mailing list,
Sign up and the
news letter will be delivered to by eMail.
UPass it on! Please send this newsletter on to others.. you never know who might benefit.
Lupus
and Fatigue
Thank
you to all our Delphi members who loyally moved
with us to MSN, we realize that it was a bit stressful
and appreciate you for sticking with us . We also want to welcome
all our NEW members who've joined us at our new site.
Our hope is that all of
Currently the Delphi site is
in a "moderated
mode", where each message is sent to a private
area for review. This makes it quite easy to find
out who is still posting to the old site and send them
an eMail to invite them to our 
