The side effects of Lyme can change your body in many ways, including both weight gain and weight loss, as well as an altered change psychologically that can leave you wondering if you are really YOU because, well, you don’t FEEL like you.
Good self-esteem can be altered by these changes, unfortunately.
I’m certainly living proof of this; three years into getting sick, my body had amazingly packed on a good 30 pounds. There was no reason for this, considering I was barely eating after trying every diet under the sun after cutting out bread, drinking gallons of water daily, juicing fresh vegetables for my “meals,” cutting out sugar and preservatives and “indulging” my body in liver and colon cleanses on a regular basis. Throughout this, I was also navigating the early years of being a teenager and the pressures I felt as a young woman.
I had horrible, horrible self-esteem. It took years of pain, an eating disorder, and the truly miraculous rescue of my dog (who then in turn, rescued me from my eating disorder) to bring about a sliver of appreciation for the person I had become.
Now, as my weight again fluctuates however it wants, thanks to the intense Treatment I am currently undergoing for Lyme, my self-esteem also bends to and fro as I ask myself this question:
is it more important to look and feel good, or to be healthy?
Lyme forces us to answer. Often we have to choose the answer that, at the time, is best for our bodies…
just not the body we see in the mirror every day.
When I first got sick,
I realized something very quickly.
Talking about my sickness
didn’t win me any friends.
In fact, it made people react strangely to me.
Though the culturally expected and polite question, “How are you?” was asked, tense physical features and uncomfortable silence followed when I answered with even a sliver of honesty regarding my health.
I realized people didn’t want to know.
My personality brings with it the ability to often see unspoken words behind the eyes of others, and time and again desperate pleading for the common answer, “I’m fine,” lurked behind their eyes as they silently begged me to bypass the honest truth in my life.
Even I, still in my early teen years, saw the relief in those who silently blessed me for answering with the culturally correct answer as their postures relaxed and the atmosphere remained within their comfort zone.
I’m no genius, but it doesn’t take a genius to realize that there is nothing like extended sickness to bring out our TRUE friends…
and force us to realize that the social circle previously assumed to be a part of life, the circle that partied and gossiped and giggled
and embodied everything fun and fancy free,
was forever changed.
After realizing this truth
I became an expert on silence regarding my pain and the strange, unknown symptoms
that were quickly consuming my everyday life.
There have been some who truly tried to stay and help,
but became truly frustrated by my stubborn silence.
Shaking their heads, they went on with their life without me.
I cannot blame them;
after all, canceling plans
for a second or third time
because of symptoms that fluctuate
and, of course, strike you with severity every time you attempt to go out
would frustrate anyone.
Well, anyone except those special few who understand chronic Lyme. After all, they often have to do the same thing.
These precious friends are few and far between, however.
Because of my experience I have a deep burning in my soul, a strong desire to help other young people with Lyme disease… I want them
to know there is someone to talk to, to spare them the intense loneliness
that surrounded my teen and early adulthood years…
should have to go through what I did.
But during those years there was no way I could express the painful feeling of loneliness…
How do I explain my inner sadness and heart-felt hurt that,
after I had invested so much into a friendship,
it still disintegrated after my “friend” and our friendship mysteriously faded into the night.
How do I explain the hurt after this scenario occurred time and time again?
Your social circle, as you knew it before Lyme, may have diminished to a precious few supportive friends or family members.
But LYMIES, there is someone out there in the vast world beyond you who understands.
understands many of the side effects and symptoms of chronic Lyme disease…
Because of my personal journey with chronic Lyme,
I am able to identify and sympathize with all the stupid side effects and the numerous symptoms that you are required to deal with…
I understand why plans must be cancelled for the umpteenth time…
I understand the inability to complete sentences when intense fatigue plagued your body…
I understand that there are “good days” and “bad days” that can fluctuate like a freakin’ roller coaster.
Some attempt to understand before quickly advising you of a pill/supplement/diet, etc, that they tried. “It worked miracles for me! You HAVE to try it, I’m SURE it will improve your health!”
When their suggestions failed to have a positive affect on my body, the reaction from the attempting-to-understand individual would often say, “Well you must not have taken it for long enough. Sometimes it gets worse before it gets better. You didn’t give it a fair try; you should have done 9 months instead of 6 months.”
I’ve learned to say nothing in reply to these comments.
Unfortunately, others still hold onto the belief that if I had just followed their advice I would be SO much better.
these people often disappeared
after their miracle cure did nothing.
There have been those
who stuck with me for a time;
after canceling plans for the second or third time however,
they shook their heads and gave up on me,
assuming that these cancellations
translated to a desire to push their friendship away.
,The exact opposite was true, but I found it nearly impossible to explain
WHY the cancellation was necessary,
to explain the roller coaster of symptoms that give me “good days,”
followed by “bad days” that hit me with pain so intense
I simply have no energy to give to others.
As a chronically ill LYMIE,
the reality of life has caused me to grow up
and make difficult and often painful decisions to decline invitations that I knew would drain the little energy my body possessed… even though I know that my decisions would likely anger or hurt others…and sometimes end a friendship I want to keep.
There are times
when I must remind myself that
with the hope of healing to which I cling,
that allows more social appointments,
more ability to plan ahead and not have to cancel,
and more confidence to travel
will indeed be possible.
The loss of friends and an active social life can cut deep.
That is why I now write my story for others to read,
though some will criticize, judge and may even use the information against me in some way.
As mentioned before
the deep passion that daily burns at my heart and soul
and now drives me to open up
and share information
I vowed never to pass on,
lies in this simple explanation:
I don’t want other young people
to experience the loss of friends, family, and the needed support and encouragement
needed in order to survive
the intense hurt and loneliness
that often occurs due to the chronic Lyme disease that threatens to consume their life.
To those reading this who suffer from chronic Lyme disease…
You are not alone.
It may feel that way
but I want a piece of my soul
to come through each entry in this blog
with the hope that
sharing my intensely personal journey of life with Lyme
will, in turn, touch YOUR soul.
LET’S BE FUN, POSITIVE AND PUT ASIDE OUR HEALTH ISSUES FOR A MOMENT…
NOW, it’s time to think about your dreams…
try not to think about your health and where it might take you in life.
Just think about your dreams.
NOW THAT YOU HAVE THOUGHT ABOUT THEM…
- What sort of adventures to you long to experience?
- What is the one, crazy desire you have, such as para-sailing over Hawaii, climbing Mt Everest, writing a book?
- If you could travel to ONE place in the world, where would it be?
- What is your dream job?
- What ONE hobby would you love to spend more time on?
- If you could eat anything and everything, what restaurant would you want to go to? Is it famous, or is it local?
Come on, be creative. Be honest! After all, no one is judging you here… I am just encouraging you to dream for a moment.
Dreams often provide extra determination of spirit and will.
Provided below are some photos to get your mind rolling. So dream LYMIES.
Exhausted by life and the struggle against chronic Lyme, one method that helps me battle the negative effects is, YOU GUESSED IT, quotes.
Somehow, they remind me that a bad day does not mean a bad life…
that courage is trying while crying…
and that the battles we LYMIES face may not last forever.The quote below is written on a sticky note in my bedroom. Every night when I crawl into bed, the note is right there in front of me and every night, I gaze on it, understanding the depth of pain and suffering that comes with this quote but clinging to a hope that the battles I face today may not be battles that are faced for the rest of my life.
Perhaps this quote, this Sticky Note for the Soul, will bring a small amount of sunshine and inspiration to you as well, my fellow LYMIES.The battles we fight are fought day after day after day… but we do not know the future. One day, the battle may stop and we will emerge the heroes; the battle of gradually getting better instead of worse from Lyme disease may one day be ours. As one whose symptoms have worsened over the past 13 1/2 years, this small Sticky Note reminds me that, although the odds are agains me, I may one day win my battle and begin to heal from this disease known as chronic Lyme.
Will I ever get better?
Will my fight against chronic Lyme ever be over for me?
These thoughts cloud my mind and determination to fight and sometimes… I give up.
I’ve worked so hard for nearly fourteen years, been so determined, and tried again and again to heal only to face failure in my attempts.
Failure teaches us lessons, sure… but with the battles of chronic Lyme facing me, trying with all its might to crush me under its weight, sometimes my knees buckle and I fall to the ground.
I have no strength to get up, even though I must. I have no inner determination to continue fighting, even though I have no choice. I have no positive spirit, no ability to dream of days when I will be well.
Those with chronic Lyme experience the same battle; young people with chronic Lyme especially have reason to succumb to these thoughts as the disease
threatens our youth and steals our ability to
pursue a career, finish our education, succeed in a relationship or become independent.
Sometimes facing reality is too much for my Lyme-riddled brain. Other people, young people especially, who are facing chronic Lyme know this same feeling.
It’s a reality that I face daily. I learned long ago that no easy answer to the fight against chronic Lyme exists for me and in all likelihood, my fighting will continue for years to come as I struggle to simply survive.
To those who understand my words, know that there are people in the world who feel your inner pain and struggles.
There are people, such as myself, who can and do,
drop to our knees right beside you when you face similar battles, sharing your tears.
You are not alone. You are understood by someone out there.
In the beginning of my struggle I met with deep disappointment, discouragement and depression when others would judge me after I shared even small details of my illness, or simply not believe me and became wary around the “sick girl.” Guarded looks and stilted short talk were often the first signs that my social circle was about to become even smaller.And so, in response, I learned not to speak of my illness.
This went on for many years, and only recently have I decided to “come out” about being a chronically ill (but kick-ass) Lyme disease sufferer. The effects have changed in the past decade; more people are open to the devastating effects of this disease and what it can do to someone.However, others have learned to turn the tables and use whatever facts I have shared to tear me down in ways I never dreamed possible.
The cruel ways in which friends and trusted acquaintances have taken the strength of mind and will that suffering has built-in me and turned it around, much like a lawyer who badgers a witness in order to tear apart the truth in the minds of the jury, weaving words like uncooperative, obstinate, incapable, unaware, insubordinate, uncaring and neglectful, into a tangled web that is then cast around me in order to raise suspicion and distrust from those looking on.Many have chosen to believe that my chronic illness means I am an impaired delinquent and devoid of the ability to handle life. Dear Readers: I have a few things to say about LYMIES and how we differ from others, but not in a bad way; in truth, LYMIES often stand taller and stronger than others because of this disease.
- Remember that someone who has been ill will go through intimate struggles, struggles that are extremely private and rarely shared with the outside world. A LYMIE’S support team are often the only ones to truly know what that person is experiencing, and so before you judge a sick individual, remember that you NEVER have all the facts.
- Do not forget that every individual has their own personality. Often, LYMIES feel as if their personality is out of reach while struggling through the recovery process, but the fact remains that each LYMIE is UNIQUE and AMAZING and often, far stronger in character than others realize. If you knew the individual before they shared about their struggle with Lyme disease, remember they are still the same person, no matter what the side effects of medications or pain may produce.
- LYMIES, be aware that some will gladly use the little information they know to tear you down. Although this is something that a chronic sufferer should not have to deal with, it is important to know that when others are trying to bring you down, it is because they recognize that you have something they do not.
You have the ability to endure.
well-worded post about how to deal with stress, I am compelled to add these words of wisdom about the same topic.
Got stress in your life, fellow chronic LYMIES?
You know what, sometimes, you just have to follow advice such as the following…