Wahoo!

Dear Journal,
  I took a shower today.
  Take that, Lyme – I actually felt up to doing something that these days, can be very difficult to accomplish! Wahoo!
-Shelby
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“THE LOSSES OF LYME:” SELF-ESTEEM

 self-esteem pic 2 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.
self-esteem pic 1
  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.

“THE LOSSES OF LYME:” OUR SOCIAL CIRCLE

  When I first got sick,

I realized something very quickly.

girl on beach

  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.

im your best friend

  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.  

girls walking away 

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…

 

NO ONE
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? 

girl alone on beach

  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.

Bermuda July 2013 244

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.

 Not surprisingly,

these people often disappeared

after their miracle cure did nothing.

 

couple watching sunset

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. 

girl on beach 2

  There are times

when I must remind myself that

someday,
with the hope of healing to which I cling,

a life

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. 

Bermuda July 2013 193

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.

 

 

girlfriends

 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.

Dream big

wedding bouquet

someday paris

petsExclusive. Alfred, The World's Oldest Parachutist - Soulac

girl on harley

loving lifeBermuda July 2013 001girl on harley davidson 2

enjoying beach

Sticky Notes for My Soul

Margaret Thatcher
is one of my personal heroes and a woman whose spirit, self-confidence,
and willingness to plunge into the unknown helps to bring some inspiration to my tired soul.
walking-on-the-beach-871297516032sFP
 
 

 

 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

sunset

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.
 
 

As a quotes lover, I had to share this with you.  margaret thatcher quote

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.
 
 

Sometimes…I Give Up

sadness I'm your girl

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.

 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.

 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. 

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.

To Speak or Not to Speak

woman+looking+out+windows-urban+city+view+skyscrapers+evening+night+blue+black+white_troy+house+photography-1

Having struggled with chronic Lyme for over thirteen years,
I have discovered a few interesting facts
about the world around me.
 

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.

On Life and Lemons

Lemon 2   Although I recently wrote a lovely,

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…

leomns

DUDE…totally!

 Sometimes you just have to put your stubborn attitude

in front of the crappy life you may be experiencing and slice that sour yellow food.

funny-life-lemonade-lemons            Hey, life sucks.             

             Lemons suck            

(most of the world agrees with me; after all, they are sour).

life-and-lemons

Umm...referring to the photo above… unless you have a stronger attitude than I,

screw this advice on days that suck…

Hey, if you can’t squirt life in the eye,

you can always follow this advice...minitokyo-original-wallpaper-249468

And that,

my fellow LYMIES,

is my mature advice for the day.

–TO DO– today…tomorrow…every day after that…

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Therapy For the Soul

Cute-Dogs

  My dog is a rescue;

I found her on the streets and she stole my heart and has not let go since that day I met her nearly three years ago.  The photo to the left is not her, it is simply a photo that represents a type of therapy for those going through illness. 

Animal therapy has helped me tremendously – more than I can ever say! My Bella is an 8 pound Miniature Pinscher who is more than happy to sleep on my lap all day. 

  Animal therapy is just one type of therapy that can help with those experiencing pain beyond belief and struggling to make it through each day.  Each person is different; and so, keeping that in mind, I mention below a few other therapies that, again, have worked for myself.  Perhaps they have worked for others, or perhaps they are new ideas that you may be able to try.

benefits-of-meditationMeditation has helped me tremendously. 

 

When in searing pain it is difficult to train your mind to concentrate on anything other than pain, but before that level of illness hits I am often able to take a few moments and simply close my eyes and take my mind out of the situation and environment that surrounds me.  Frustration surrounds us every day; no one goes through life without some type of battle to fight. 

Chronic illness is a battle that few understand and many take advantage of, and the frustration that follows can cause stress that surrounds your body.  Even while fighting, such as during a doctor’s appointment where the “specialist” is doing everything in their power to convince you that your illness is “all in your mind” or accuses you of “simply wanting attention from others” (both of which, sadly, I have experienced), taking a moment to remove your mind from the stupidity of the situation may then allow you to put the doctor in their place. 

  For me, meditation has helped most with stress at my job.  I have struggled to keep my job throughout the past few years with a determination that defies my situation.  I am not out to prove to my family or myself that I can do whatever I want to do; I am simply determined to not return to the days of being bed-ridden where depression, stress,  anxiety and other symptoms swallowed me up and sucked the desire to live out of me.  My desperation to stay away from returning to those dark days keeps my determination at such a level that even though my pain is incredibly severe I get out of bed every morning and arrive for work on time, do my job, and do my best. 

The stress does get to me at times; mostly when I’m surrounded by people.  I can close my eyes and meditate on my safe place, do my deep breathing exercises and remove myself from the situation.  Meditation has truly saved me many times, although, as with most therapies, it does not always work.

Official-Office-Wallpaper-3-the-office--28us-29-34273_1024_768

  Another therapy: watching a TV show that allows stress to roll off your shoulders.

  For me, The Office is one of those shows and although I have seen every single episode from seasons 1-8, I re-watch episodes nearly every day.  For whatever reason, it relaxes me and makes me laugh. 

logo_no_words

Therapy through Music: how could this not be mentioned?

As someone who was studying to be a Classical pianist throughout my younger years and teenage years, I was surrounded by music and even fell asleep listening to Rachmaninoff.  Although my illness killed my hard work and dreams, I still understand how music can affect your soul, your body, your essential being and join your left and right brain to both calm you and excite you. 

Pandora is a favorite website of mine these days as I listen to calming songs on my laptop; is music a therapy for you?

For this post, I believe I have mentioned enough  therapeutic ideas. 

Please keep in mind, these are all ideas that have worked for me.  Everyone is different, and everyone has different ways that they get through each day. 

While medication and supplements are deeply important for the chronically ill, taking care of your spirit and soul (such as laughing, relaxing through deep breath or mediation or another therapy that works for you) is, in my humble opinion, just as important. 

Guys & Dolls ….oh, and Lyme

5172660-a-couples-feet-touch-on-the-beach

A few days ago, a young man came to the house selling a pest control contract; he noticed the many “Fight for Lyme Education,” “Fight for a Lyme Cure,” etc, signs that are around the house.  When he knocked on the door, I opened it, inviting him in as my parents were busy and unable to hear his pitch right that moment.  We sat down and he immediately began to ask me about Lyme disease, mentioning that he met a lot of clients with Lyme disease in his business.  tumblr_lwen7mFMML1r7qsomo1_500
 
His questions were direct, thoughtful and personal as he asked about my story. 
 
He mentioned that he had gotten a tick bite a few months back and asked how he would know if he had Lyme, since the test he took at his Doctor’s had come back negative (I kept back a laugh).  I started down a list of symptoms he could experience and as I questioned him, he suddenly stopped me and asked if I had gone through all of these symptoms. 
 
This DID prompt a laugh as I mentioned again that my story stretched over thirteen years and the symptoms were too numerous to explain.  His eyes never left my face as he asked, first gently inquiring if he was being too personal, how intense the pain could get for someone with chronic Lyme disease; his clients, he explained, were mostly those who had recently been bitten and did not want to repeat the experience as they went through the basic antibiotic protocol. 
  As I responded to his questions, explaining only what I felt comfortable sharing but giving him as much information as I could, a thought started to build in my mind. 
 
This young man now knew about my chronic Lyme disease and some of the symptoms and pain levels that followed me throughout the day.  He was a salesman (meaning it was his job to show interest and draw a client in so they would sign up for his particular product), and when  my parents came into the room and took over the conversation, I silently moved into the background. 
 
Building and growing stronger, the budding thought took shape: how much easier would it be to date someone who, like this young man, already knew about my chronic disease?  My dating life has gone through the painful experience of a first date that, instead of being romantic and special as you imagine, was taken up with my explanations of my disease and the limitations it would place on a relationship. 
 
  If someone already knew all this, would it be easier to date? Going out on a first date would be about us, as a couple, instead of my disease, and the following dates would be much easier to plan as the young man would already know about the fatigue, intense pain, and mental fog that wraps around my day. 
 
I have dated someone who did not know about or understand this disease, and I attempted explanations as we went along…I’m sure I could have done a MUCH better job, but having to explain the extreme fatigue/pain/fogginess/near-migraines, etc, I was feeling to such a wonderful young man who just wanted to take me out and share the places he had found that he thought would be special for a couples’ outing, or beautiful landscapes on the beach or a nearby park for the two of us to enjoy was SO HARD. 
 
It was even harder knowing that I was making him suffer although he most likely did not realize it.  The realization that my illness was holding him back from what he could truly experience and accomplish in life was intensely painful.
 
  Would it be easier to date someone who already has the questions answered, who knows the disease and understands its effects on those suffering from it?
 
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Guys and Dolls are one thing…

Guys and Dolls and Lyme are quite another.