|That is the way Lyme and other tick borne diseases are --- one can be up and about --
nevertheless, others cannot see what one is experiencing in his or her body because the
diseases do not show on the outside --- and the neurological disease does not show how much
pain, agony… we, those of us suffering from late stage Lyme and other tick borne diseases,
are in, on the outside.
We just continue on and surrender the attempt to explain -- we put smiles on our faces and
communicate with everyone around us -- and appear 'normal', appear ok, appear not nearly as
sick as we really are -- and yet, simultaneously, we are in such excruciating pain in our bodies
that there are not words to describe the levels --- we struggle beyond belief to comprehend a
conversation and do not soak in the content until hours or days later, even though we appear
to be tracking what is being said in the midst of conversations -- and when we finally get it, we
don’t fully comprehend and are left often with confusion -
We may stand, sit, lay there and look another in the eye, all with a smile -- while inside, we are
hoping we do not pass out cold, hoping we do not start twitching so much that this symptom
profoundly shows, hoping we do not fall over, as the feeling of being on a boat suddenly gets
to the point where the seas have become very rough, as our brains are over stimulated just
from interacting -- and our gates are unsteady on a continuum --
We feel our knees buckle beneath us, if we are able to stand at all -- yet we hold on -- we hold
on to whatever is near, we lean on a wall, grip tightly to a counter, or anything to provide
stability, and we hope to hold ourselves up; in a standing position, in a sitting position,
whatever the case may be----
We forget to breathe in the midst of all of this; our brains and organ systems and body as a
whole cannot process the things that physically healthy individuals take for granted -- so while
working on understanding a conversation, while attempting to hold ourselves up, while doing
our best to deal with the unspeakable pain throughout our whole being, and with each cell
literally pulsating ---- we forget to breathe -- so our hearts start palpitating and fluttering and the
chest pain reminds us that we are not getting enough oxygen and that our bodies are in a
place where the stimulus is too much --- we have a choice at that moment, to totally shut down
-- and fall down -- and pass out --- or --- to do our best to get a breath in and hope and pray
that we do not pass out, or have a seizure, or start twitching uncontrollably where others can
blatantly see ---
Patches of extreme heat and extreme cold flood different parts of our bodies without warning---
intense pain on top of the overall pain quicker than instantly shows up at any given moment in
our bodies, at any given place -- and moves without warning -- where all we can do is our best
not to panic or cry or be frozen with fear--- and do our best to roll with whatever is happening at
any given moment, talk ourselves through, and not complain.
The twitching so deep within our organs, muscles, and tendons… is continual, like someone
constantly snapping rubber bands deep within our bodies -- and at times is like someone taking
a hot or freezing cold ice pick and stabbing us from the inside out, throughout our bodies,
within our bones, repeatedly. Our brains swell and we feel the pulsating with every word
uttered to us and every word we attempt to speak --- we struggle to verbalize what we are
thinking. We struggle to find the correct words to match what we are attempting to speak -- we
struggle to pronounce what we are attempting to say. The pressure mounts for us and we
again, do our best to breathe, to smile, to hold ourselves up….
The fire inside our brains from the toxins, the swelling, the fight, is a burning parallel to what we
can imagine the fire of hell to feel like---the migraine/headache that we have had for, well, we
have lost count of how many years now, intensifies...
At the drop of a heavy weight, an area of our bodies will become numb yet be more painful
than words can describe -- this too we have no control over, but to roll with it as such occurs,
and to do our best, again, to remember to breathe in the midst of fear from such unpredictability
of what is happening in our bodies at any given moment in time, depending on where the bugs
are -- depending on which co-infection is more awake and active at any given time --
depending on how our livers are functioning, how much hydration we have, how thick our blood
is... at any given moment---
We pat the numb areas not knowing when or if the feeling will return, or on what level -- and
not knowing what area or areas of the body will be numb next, or when. Our bodies are tight in
spasms and the stress and strain of the battle to win the war against these diseases -- these
bugs -- these bio-weapons--- this utter evil straight from the pit of hell, ensues.
The unceasing nausea that only changes in levels of intensity, becomes tremendous, as we
attempt to converse/interact with you -- and we find ourselves quietly hoping, praying, pleading
-- within our bodies to NOT vomit at that very moment. As we stand, sit, lay…before you, we
scan the room for the nearest restroom -- 'just in case'' -- and if one is not near, we search for
the closest outside door, 'just in case' and so we do not puke on your shoes!!
As we attempt to be 'normal' and converse with you -- the room goes mostly black and we
stand there, sit there, lay there -- and fluctuations between the black and other colors that one
experiences just before passing out occurs for us while we do our best to remain conscious in
the fight, and engaged in the interaction with you.
The profound fatigue we experience does not give way to sleep. For to sleep is to our bodies,
a death sentence of sorts -- the war rages unceasingly -- to sleep is to put down the weapons
in this war and die -- so our bodies do not allow for such, for we were made to live ---we
therefore continue the battle...
When we do pass out form utter exhaustion that the human language cannot describe -- the
bugs wage a higher war and we wake in more pain, gasping for air, or with intense nausea --
because when we sleep, we do die a death of sorts as the diseases get to take over more than
when we are awake -- so our sleep is a feared foe for our bodies -- for we know when we
wake, we will have to fight harder to even get back to the misery we felt before the absence
that the sleep provides our immediate consciousness ---
We have to fight physically, emotionally, mentally, and spiritually -- unceasingly -- and
especially after awaking from 'sleep'...
The restoration and refreshing sleep is meant to provide -- a far acquaintance to us, with
Lyme, etc, for we know not this experience -- not even in our imaginations any more. That is, if
we are 'fortunate' enough to wake at all.
With many Lyme et al sufferers dying in their sleep -- the blood gets thicker while we are still --
we stop breathing because we do not have the energy to draw breath or the consciousness to
figuratively slap ourselves to take a breath or to cough to jump start our hearts, so we lose our
lives all together in the midst of 'sleep' -- we are typically alone so there is no one to make sure
we are breathing, for the most part.
A blessing? Some would say so. Unnecessary and beyond unfortunate and totally preventable
--- absolutely -- should we someday live in a world where illness is not for secondary financial
gain for the ones who are suppose to keep us safe and help us to heal, in this -- the most
powerful Nation in the world -- the one Nation under God -- founded on Christian principles.
The loneliness of Lyme sufferers is a parallel to what one would imagine experiencing in
solitary confinement with no one to talk with -- no one to help -- no one to bring food or water --
no one to bring an ice or heat pack -- no ones hand to hold at the utter terror moments of
certain symptoms we face/experience with Lyme and other tick borne diseases.
We stand, sit, lay before you and recall the moments where we cannot breathe, where we are
gasping for air or cannot get a full breath, not being able to swallow --- not knowing how long
such will last or if we will 'make it through' the episode alive, 'this time.' We stopped going to
the ER for help long ago -- for hearing one more time that 'Lyme doesn't’t do that…there's no
such thing as late stage Lyme… you are psychosomatic…there's nothing we can do for
you…your CBC is normal, there's nothing wrong with you…you are an idiot…" is not something
we need face or have to pay money out of our pockets to experience, especially when the
majority of ER visits do not help us with the symptoms of these diseases.
With this, a lot of the time our presence is ignored, as the doctors and other staff in the ER
commonly talk right past us to whoever is with us, as if we do not exist. So again, we have
learned to 'quietly' ride out the acute storms in the midst of the chronic disease state our bodies
are enduring; most of the time, alone -- sometimes, with another by our side.
Our clothes hurt our skin at times and we stand, sit, lay, before you, anticipating the moment
we can discard them to alleviate the physical pain that our clothes touching our skin can cause.
We sit with you, stand with you, lay in front of you or next to you…and though all of this
described herein is our experience, unceasingly, in whole or in part---- we so value the
connecting with you -- the interaction, the semblance of life -- even if for but a moment.
For when we leave each others presence -- and go back to our dark rooms with sunglasses
on, and no TV or radio for distraction, or 'company' because the stimulation of interacting wore
us out and over stimulated our brains and bodies on a whole, we are then unable to take
anything at all in; light, sound, visual stimulations, ---- we sit, lay, stand, completely alone with
deafening silence and loneliness ---- while outside of the four walls that have become, for the
majority, our whole and very small world -- life -- ah life, that we cannot even imagine anymore
--- continues on.
So when you see us, whether in a bed, in a dark home, a wheel chair, in a store, hiking on a
mountain top, in a classroom or a doctors office, on capitol hill, at a conference, out to dinner
with friends or on our computers in a coffee store - being moms, dads, sisters, brothers, aunts,
grandmothers, uncles, grandfathers, doctors, counselors, friends, lone soldiers... please know
this is the tip of the ice burg of the happenings within our bodies on a whole -- please be
merciful and patient with us -- please know we did not choose this plight -- we do not want this
life ---and though our smiles may say different, there is nothing about this journey in such
suffering, that we even remotely enjoy.
…And when you see or hear us having a 'good' day, hour, couple of days, couple of hours… it
is but a moment, for what follows is a hell to pay that your worst nightmare could never fathom
or parallel -- for the moments when we have a laugh -- get to interact with you in person or on
the phone, write or respond to email or text messages...the physical pain of such is worse than
the pain you may experience after a long and hard work-out, after a long hard day's work while
having a bad cold.
How do we know you could not possibly understand?
How do we know the pain, your pain just described and how it vastly differs from the pain we
now live? We know because for a lot of us we were not always this ill -- we had a time where
some semblance of 'normalcy' looked back at us in the mirror and was experienced within our
beings --- where the 'common' pains as a result of a restless nights sleep, an overextended
workout or hard days work in the yard or the office or of Holiday gatherings…. and occasional
injuries --- all things that are a part of life --- were a part of our lives --- until -- until the disease
presented and took over --- took hold and dictated the happenings in our bodies, which we
fight so hard and tirelessly to overcome, and allow our bodies to prevail in healing ourselves as
we were designed to live--- but because of the nature of the diseases --- some believing them
to be bio-weapons; and the majority without means; financial, physical and/or emotional
support, understanding, among other resources --- a lot of us cannot get the things (treatment,
etc.) -- that we need to help our bodies to heal ---
So we march on here too as we do in all other areas of this life, finding something everyday to
help us remain optimistic, searching for avenues beyond the impossibilities to help others
whether through encouragement, prayers, or other means -- we continue on with Lyme disease
and co-infections (other tick borne diseases) -- and we turn to our God for solace and we trust
by sheer choice to believe in His love for us -- as evidence is much of the time not present for
us to see -- we 'walk' on, in faith and continue to hope and at the darkest times, to hope even
for hope ---
We are warriors in this battle, this life --- and we , though not seen or believed by most, carry
within us a deep capacity to love, relate, understand, discern, empathize, serve, and share
wisdom -- more than most, as our long suffering has, if we so choose, afforded us the
opportunity to know Him more intimately and to Love genuinely, as He does and purposes us
So when you see us and we appear ok -- when you see us and judge that we are nothing or
are just being emotional with no real physical disease, or that the diseases we have; late stage
Lyme disease and other tick borne diseases, are not real, serious, and grave….diseases,
realize the wealth of genuineness that we are and the grand jewels you are writing off and
discarding as 'less than,' as 'not worth anything' as 'unimportant and insignificant' and without a
valued or legitimate voice, and --- visit the memorials of those who have died from these
diseases, as there are many; visit the advocacy sites for these diseases and the articles in
scientific journals, peer reviewed journals, about these diseases --- imagine your life being
taken by physical diseases that you cannot control or do not have the means to get proper
treatment for -- imagine, if just for a moment, losing your family, your friends, your career, your
home, your finances… as a result of a physical disease -- and then dig deep and do your best
to discern what it would take for you to endure such, to persevere through such, against all
odds -- and finally, realize the courage, patience, faith, compassion, tenacity, humility, inner
strength, fortitude, and tenderness we have…
To further help with understanding on a much lesser scale, recall the hidden things of your
world, your body, your life, that you experience and feel, which no one else can see, things that
are not seen on the outside --- as such, does that mean they are any less real or important,
significant or meaningful to your being or life on a whole?
The devastation of our whole lives, you do not see -- for you are with us but a brief moment,
yet long enough in your mind to make a definitive judgment regarding who we are, what kind of
person (people ) we are --- how we feel, and what's real/true and what's not or can't be
possibly be true -- and I would venture to say that what each individual decides about us and
the diseases we have is mainly based upon what he/she can handle as truth rather than truth
Before you decisively judge us -- think long and hard, with your heart -- and perhaps see with
the eyes of your soul rather than those placed on your face --- and perhaps instead of making
a judgment, attempt/decide to relate with us and seek to understand--- it might turn into the
best relationship you ever had or could imagine.
Think about life and the process of living -- we will all, at some point, need understanding, a
hand to hold, support, and help.
Look beyond what your eyes tell you they see -- and listen to what we share -- believe us, pray
for us, support us, care, love us, be patient with us, encourage and affirm us, hold our hands,
hug our necks, sit face to face with us and have relationship with us, make eye contact with us
---- be with us ---- give to us and receive from us -- and who knows, one day we may all truly
take the opportunities we have to be genuinely one - in the Love of the Most High.
…should you find yourself not getting this…until you get it…we will be here for you, too.
Thank you for listening. May God bless and heal us all.
Elizabeth L. Chalker
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Are you, or is someone you love suffering with Chronic Serious Illness? Please read below to find understanding
for what it is like to live with such challenges.
That You May Understand…
Copyright © November 13, 2008 Elizabeth L. Chalker
|Lyme Disease/Mold Illness Links
Lyme Disease Association
International Lyme and Associated Diseases Society
View Lyme Documentary Trailer "Under Our Skin"
Mold/Biotoxin Illness (Genetic Deficiencies )
|Elizabeth and her beloved son and
companion, Symon (Whole, in full glory
in Heaven - 1/24/2011)