Below is some helpful information taken straight from my book "Dreams to Dust" to hopefully help those of you who have a loved one who is now suffering from Epstein Barr.
Family members may have
it worse off than those with the EBV. At first it may seem as though your loved
one is simply lazy - bored with you and life - or even rudely inattentive when
you try to have a conversation. Before you jump to conclusions that there is
something wrong between you and your EBV family member consider the following
things.
1. Understanding your family
member's or friend's medical condition is the first and foremost thing you must
do as an "outsider." Your loved one truly does have a disease
even though it seems "fake" to most medical doctors and others
surrounding the EBV victim. The symptoms are real, the actions (or lack
of) are not being "put on," and the last thing an EBV sufferer is
looking for is sympathy or pity. They are looking for people to simply
understand where they are coming from and accept the ever fickle occurring
circumstances. Remember, as a family member or friend - educate yourself and be understanding
- don't hand out sympathy or pity.
2. The person with
EBV will often times be too tired to even move. This is real, and should
be taken seriously - not as a joke or cop out. Look for these visible
signs to determine if the EBV is acting up: Dark circles under the eyes,
not thinking clearly, or panicking. When EBV flares up the EBV
victim can also be experiencing unseen things such as "lead
balloons" for legs and arms, a severe lack of physical motivation,
confusion, and aching muscles/joints (especially in the neck and
shoulders.) The best way to deal with this is to simply agree with a
"dose" of understanding.
3. The person with
EBV will seem to be disoriented at times. This is what we call
"brain fog." Getting lost in a department store, in route to
their destination (home, friend's house, store, etc.) or even walking around
the block are all times when your loved one can become
"lost" in a sense. They need to have a way to contact you
immediately for assistance if they are going to be alone. A cell phone is
a great way to communicate when you are apart.
4. The person with
EBV may become overwhelmed if too much is being required. For
instance: You may plan to go to dinner and movie with your friend who has
EBV. At the last minute walking out of the restaurant your friend says to
you "I cannot handle sitting in the movie theater and then having
to get in the car and ride home!" Once again, this is a real
situation which can occur. The best thing to do is to say "OK -
let's just go back to your house and hang out." So many times an EBV
sufferer is just looking for the comfort of knowing someone is there with
them where ever they may be. Companionship of friends and/or family is a
plus in many cases for the EBV victim.
5. When the person
with EBV says no to doing something, they mean no. Accept the
fact they cannot handle the task at that moment.
6. Each EBV sufferer
will differ in physical things he/she can or cannot do. I myself cannot
handle doing any work that involves using my arms in a forward/backward or
push/pull motion for extended periods of time. Things such as using a
heavy vaccuum cleaner, taking laundry out of the washer and putting it into the
dryer then taking it out of the dryer, or raking the yard are all things I stay
away from. However, I can use my arms in a side to side motion much
easier. I have learned how that I can do small things like dusting,
cleaning mirrors in the bathrooms, or scrubbing sinks. For a little bit
of physical fun I have found that kayaking on calm waters or very slow moving
streams is perfect for me. A kayak paddle is used in a side to side
motion more so than regular rowing. We prefer a tandem kayak so if I do
become to tired, Don can finish the trip himself. Take your EBV sufferer
swimming. The water is a great place for them to get a little bit of
exercise in a "weightless" environment. You may want to
encourage them not to go under the water if they are susceptible to any type of
sinus problems or bronchitis. I have experienced a "parasite"
from swimming in a public pool - I'm not goin' down that road again!
Remember, their immune system is what is wacked up - anything that can attack
it will. Then it's down the long road to getting back to being well - as
well as they can. As if going through the new illness isn't
enough hassle, the EBV person will spend added time recovering
from recovering!
7. Stress is the
absolute worse! Subjecting your loved one to stressful situations will
only cause them to have a spell and "crash." By
"crash" we mean become too tired for anything - moving at all,
thinking, eating, etc. Each EBV person will have their limits of stress
they can handle - if any. For instance, some can drive a car with little
or no stress - me on the other hand, driving a car is at the top of my stress
list! I become very tense in the traffic - trying to keep in my mind
where I am going, how I get there, hopefully remember how to get back home, and
keep a watchful eye on all of the other cars around me! I avoid driving
as much as possible, but there are days when it calls for me to do
so. Some EBV people may find it too stressful to answer the phone,
while others may find it too stressful to be around large groups of people.
8. Anxiety attacks
are common. When an EBV loved one is panicking - help get them to a calm
environment. Play soft music, and talk to them about fun things you have
done, or upcoming events they may be looking forward to. Get their mind
off what ever it is that is causing them to "freak out." For
me, loud environments with a big crowd really seems to set me in a panic
anymore. Instead of putting myself through this, we simply avoid events
where the atmosphere may offer such conditions.
9. EBV
victims early on have to deal with the fact that there are things - simple
things - they cannot do as well or as easily as they used to. They
probably won't want to admit this, but it is a fact and in time will be
overcome. Assisting someone with EBV to get dressed at the start of the
day and undressed when the day is over, believe it or not, is one of the most
helpful things you can do. Often times in the mornings and
evenings the old joints are stiff and painful. A little assistance
of pulling a shirt on/off off or bending down to take off their socks at the
end of the day for them is a wonderful act of kindness. I know it
sounds silly, and they may fight you at first - but keep up with a little persistence
and in time they will be begging you to help. I'm just speaking from
personal experience.
10. Never threaten to leave your EBV victim if
you truly love them! Being left alone is a horribly
scary thought process for an EBV victim to have to deal with, and that
just puts you back at number 7 - STRESS! There are a lot of sacrifices
that must be made to keep your relationship successful. Keep in mind, you
are not the only one who has to give up some things. Becoming selfish is
a dangerous attitude for either party. Remember, it is not you
making the EBV victim feel this way. Often times you will become the
blunt end of the victim venting, making it seem as though they are upset
with you. Usually they simply need a loved one to "cry" on -
and release their frustrations verbally. Don't take it personally.
Rely on being understanding - and you will both get through it no matter how
long it lasts. A gentle hug is a great thing!
