So, without further ado, I bring you:
Silence is
Golden:
Why Socializing is so
Difficult
Antisocial Means Surviving
Lyme
disease and its coinfections, particularly babeisa, are most noticeable in
social type settings. Lyme often affects the brain, how we think and how
neurotransmissions fire. You will notice that a Lymie may begin slurring words,
talking slower, and needing wait time before responding. It takes lots of
energy and effort to comprehend what is being said to us, and then to form a
response. Sometimes neurotransmissions don’t fire properly, or connect, and
then we can’t process at all. In my experience, the fatigue and weakness can be
so bad that I not only slur words or struggle to find the right words, but my
jaw will even start trembling. This happened after treatment started for me. As
the infected blood cells die they release toxins and that makes it difficult to
communicate some days.
A Lyme
patient does not often benefit from visits or social calls. All our natural
instincts to keep a sick person company or spread good cheer actually create
more strain and fatigue. If the Lyme patient is fortunate, a recovery is
possible and as time passes, socializing becomes possible. But for chronic
Lymies, and those with the most severe symptoms, it is not uncommon for only
one or two caregivers to be the only human contact.
In the
beginning of my illness, I was really sickened and weakened by weddings, big
family get-togethers, and social events. I would help organize such events and
be part of the weddings and even help orchestrate community festivals, only to
get a migraine and severe bloating the day of the event. All the planning and
the behind the scenes work were possible, but when I actually had to visit with
people my body reacted violently. Once I started treatments, visiting and
social engagements became impossible. Even one on one visits tired me out to
the point of needing more meds, more pain killers, and extra hydration IVs.
Social and emotional efforts create strong physical reactions.
This
illness is so different from anything else I have experienced, been exposed to,
or researched. The babesia causes hypoxia, meaning a lack of oxygen. Can you
imagine having to carry on a conversation and be sociable when you can’t
breathe properly and your head is spinning? I don’t wheeze or gasp for breath
all the time, but it happens. Mostly my organs are fighting for breath. My red
blood cells are misshapen and the infected ones are dying, which means not
enough oxygen is getting to my brain and heart. This makes visiting quite
difficult.
Us Lymies
fake it really well. We have had to. People do not easily understand the strain
they are putting on us, and why would we want to hurt the feelings of those who
mean well and wish to be helpful? It takes great effort to follow a
conversation, make eye contact, and respond properly. Every ounce of energy
goes into this task, and when the door closes behind the visitor we crash into
bed and call the caregiver for meds.
"It takes great effort to
follow a conversation, make eye contact, and respond properly. Every ounce of energy goes into this task, and when the door closes behind the visitor we crash into bed and call the caregiver for meds."
This
illness is difficult for friends and caregivers to understand because it is so
foreign from other chronic ailments. We do need help, yet often can’t stand
having people around. It is such a predicament to need house work done and
meals made without talking to the person doing all the work. I found it easiest
to post a list of what needs to be done, and then “hide” in the bedroom.
I hate to
use the word sensitive, but in my case, and that of many others, sensitivity is
another cause of discomfort in social settings. Noise causes me pain, and the
sense of being overstimulated. There are some people who are so sensitive that
spoken words and music actually are felt, as if the sound waves are crashing
into their ear drums and skin. Lyme disease creates hypersensitivity to sound,
smell, and sensation. Everything is heightened.
"There are some people who
are so sensitive that
spoken words and music actually are felt, as if the sound waves are crashing
into their ear drums and skin."
I have to
say that I never feel lonely or that I am missing out on things. I can spend
hours alone during the day and be perfectly happy. Now, I am fortunate. It has
only been six months. Those who have suffered for ten, fifteen, twenty years
may experience loneliness. I can’t speak for them, but I imagine a
contradiction exists in that they are lonely but cannot withstand all the
physical and mental requirements of visiting.
I feel
best when I am reading, writing, and watching TV. For a few hours each day I
can “live” through characters in books. I can feel at home in Stars Hollow or
Downton Abbey. I can listen in on conversations without having to respond. I
don't have to determine what happens next. There is no pressure on me. I am an
observer. Knowing other people are watching the same TV show at the same time
gives a sense of community. And as Steven King explains, writing and reading is
a bit like time travel. He may have written a book years ago, but at the moment
that I am reading it, his words are speaking to me and his thoughts enter mine,
and in a way we are together, conversing. If that is a bit weird for you, just
think outside the box for a while at all the possible ways to communicate over
time and space.
"For a few hours each day I can “live” through characters in
books. I can feel at home in Stars Hollow or Downton Abbey. I can listen in on
conversations without having to respond. I don't have to determine what happens
next. There is no pressure on me. I am an observer. "
One of
the other reasons social settings are bad for me or why I freak out if too many
people are in my home is because I am immune-compromised. How can I relax and
enjoy company when there is not only noise and overstimulation but also germs?
I cannot pick up viruses from reading a book or watching TV. But going shopping
or having people over always carries the risk of infection. When a person is
immune-compromised a social engagement becomes a dangerous activity. Your
child's runny nose may pose no threat to you, but to me, it is an invasion of
viruses and bacteria that can cause pneumonia or a month-long set back in
treatment.
The best
we can do for a Lyme sufferer is allow a clean, safe home. A haven in which we
feel protected. Caregivers must wash vigorously and even wear masks at times.
The home environment needs to remain calm, quiet, and peaceful. When the
illness steals everything from a person, it is nice to feel a sense of control
over the home environment. Sometimes a one-on-one visit is very welcome, and if
it is in my home, all the better.
In the
beginning of my treatments, during my weakest months, and now when I have a
setback, the best way to express my love to people is through emails and
letters. I feel deeply for family, friends, and the community. My capacity to
show that care is limited. And at times I fear that feelings have been hurt
because I simply can’t attend a function or have people over. All I can do is
hope that the illness is blamed and not me. I wish I was eloquent enough to
express how draining it is to have company or carry on a conversation. The best
I can do is say that it is a bit like being lost after wandering for hours. I
am tired all the time, and I can’t quite find the words or meanings. If I could
just write my conversation out with you, take my time with it, have a couple
hours to edit and revise, then I could communicate better. Writing and reading
require different brain functions than speaking. Written words are much
different to execute than spoken.
"I feel deeply for
family, friends, and the community. My capacity to show that care is limited.
And at times I fear that feelings have been hurt because I simply can’t attend
a function or have people over. All I can do is hope that the illness is blamed
and not me."
If you
are the "lucky" one who is deemed access to my home please know I am
putting everything into you and our visit. I am not so bad compared to other
Lymies. If you are visiting a severely ill person, please give them several
minutes to answer a query. A listener must sit calmly and without interruption.
Just give the person time to formulate the thought, find the right words, put
the words into the right order, and then speak. I haven’t had one of those days
yet. My “bad” days are pausing mid-sentence, using the wrong word, or just
becoming so overwhelmed that I get dizzy and my brain feels fried. Sometimes I
actually think I can smell the frying of wires because of the overloaded
neurotransmissions J
In future
blogs I will give pointers for how a caregiver can help if company
unexpectantly drops in or the Lyme patient needs to endure a waiting room in
the hospital. There are some supplements and mindful things that help. But try
to keep company and outings to the minimal, and in some cases you must protect
your patient from well-meaning “drop in” visits by posting a sign out front
saying, “Please don’t ring doorbell” and kindly ask friends and relatives to
stay away. You can go visit them but don’t pressure the Lyme patient to do so.
So Lyme
makes a person antisocial, but not in the normal sense. It is a survival
mechanism. Please don’t push us to do things, or remind us of social
obligations. I must say nothing causes me to cringe more than thinking of
holidays, parties, festivals and reunions. Take the noise and times it by ten.
Take the sensations, either a stuffy room or cold weather, and multiply it.
Take the few simultaneous conversations that occur around the holiday dinner
table, and throw in about ten more, with heightened volume. It makes me feel
like I am looking through a kaleidoscope whilst spinning on a merry-go-round
with carnival noises in the background.
If I had
read this a few years ago as a somewhat healthy person, I would think “how
depressing,” and by “normal” standards I suppose it is. But I am not
depressed. In fact I am quite content, happy even. Lyme changes how
a person thinks and feels. We no longer crave the attention from facebook
status updates or feel like we are missing out on events. Our experience
provides new ways of thinking and new interests. We become quite strong in many
ways, despite our physical bodies betraying us. I know my limits and respect
them. And what is more important, accept them and find ways to enjoy life.
"We become quite strong in many ways, despite our physical
bodies betraying us. I know my limits and respect them. And what is more
important, accept them and find ways to enjoy life."
The best
advice for dealing with a Lymie friend or relative is to give them the control.
If it is a “good” day visit one at a time and leave as soon as the person gets
glassy eyed or struggles to speak. Speak slowly and lowly. And
sometimes don’t speak at all. Just having someone around, puttering in the
house or doing yard work is a way of communicating. There are lots of ways to
be together and express love without actually talking. And if we do
attend a social gathering, don’t worry if we take a breather and sit in a quiet
corner alone for a little while. And don’t feel like starting up a conversation
or asking questions so that we feel included. My favourite part of any
gathering is my ability to sit quietly and just listen in, without the pressure
to speak or come up with something witty to say.
In the
end, silence is indeed golden.
_________________________________________________________________
I am very grateful to Marie for
sharing her blog, and look forward to what she has to post in the future. I am fortunate to have good days alongside the bad days now; and though they vary each in their own degree, I no longer have the constant feeling of my head spinning, or the need to live crawled up inside a hole. I know I so often wrestle with who I am-- a social butterfly, extrovert, etc; and with what Lyme has done to my social skills. I am excited to feel them coming back in stages, though I still find them confusing and frustrating at times when they still aren't what they used to be. I have rarely had a moment of not
feeling lonely, yet so often want to be alone; and almost always wonder, if not
worry, at how that affects my relationships. It is a battle that isn't even
understood by one who has it, though I am fortunate that it can, to some
degree, be explained.
More to come!
Blessings,
Kate
“On
my bed I remember you;
I
think of you through the watches of the night.”
Psalm
63:6
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