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:” PHYSICAL & MENTAL STRENGTH

Dear Journal,
  I’m scared to write these words as I’m both disappointed in myself and exhausted to the point that writing is nearly impossible. But I want my readers to know. I want my readers to read my story and see that Lyme disease can drain the body in the blink of an eye, leaving you exhausted beyond belief, drained of strength beyond feeling and understanding, and discouraged beyond hope.
  Four days.
  Four days, I laid on my couch with only enough strength to click-through tv shows. I couldn’t walk my dog, I couldn’t fix meals, I couldn’t do any work, and worst of all, I couldn’t visit with my sister and brother-in-law who were visiting during this time. Gee, I could barely stand up. Physical and mental strength had deserted me.
  My eyes would only half-open when someone talked to me. I could answer, but my voice was low and oxygen seemed to run out very quickly when I spoke.
  Journal, I was SO discouraged during this time that my body felt like a limp rag, and I couldn’t fight anything physical or emotional thrown my way. Discouragement and depression settled around me and I had no strength to stand up with my usual stubbornness and kick those thoughts in the behind. My parents were extremely worried about me and took me to see my primary doctor. She walked into our waiting room and immediately asked what was wrong. I was slumped over in my chair and so overwhelmed with being out and about, having to withstand new environments that I simply couldn’t process because of lack of strength, as well as having to force myself to think that hot tears were pouring down my cheeks. 
  On the 4th day my best friend visited me. It was hard to sit up and make room for her to sit  (I hadn’t the strength to wash my dishes, throw away my trash, or put away mail and other little things here and there), but I did my best. During her visit, I started to feel strength slowly return to my body. Could it be?
  She knew my pain, and she gave me HER strength through encouragement and understanding and the bond of unending friendship.
  The next day, I was running errands, cleaning my rooms, walking my dog, etc, etc.  Lyme disease can suck the life out of you – I am living proof – but understanding and encouragement from someone who also struggles can give you positive energy, positive thoughts, and strength to carry on.
  Journal, those four days were horrible, I cannot lie.  However, they do make me appreciate both the strength that my body has most days and those who understand my pain and suffering from chronic Lyme disease. Believe me, they are few and far between! This makes me appreciate them even more, however, and even read more on other blogs from LYMIES to get encouragement.
  Lyme disease, you suck.  You teach me lessons, making me a better and more mature person however, and for that I cannot hold on to bitterness against you.  HOWEVER, if you give me another four days like those I recently endured, then know this: I will direct intense, fiery anger against you and speak words that will leave no doubt as to how I feel about your little “teaching moment,” and I will direct negative energy and thoughts towards you, such as
“why me?”
“will my life ever get better, or will my suffering define my future,”
“I can muster up the strength to fight this physical pain, and I can grab my encouragement cards to fight the mental pain, but it will take everything I’ve got,”
and the famous quote from one of my heroes, Margaret Thatcher,
“sometimes you have to fight a battle more than once to win it.” 
  Shelby

“THE LOSSES OF LYME:” Self-Esteem

“Win”
by Brian McKnightgreen pics 5

 

Dark is the night
I can weather the storm
Never say die
I’ve been down this road before
I’ll never quit
I’ll never lay down, mm
See I promised myself that I’d never let me down

    I’ll never give up
Never give in
Never let a ray of doubt slip in
And if I fall
I’ll never fail
I’ll just get up and try again

Never lose hope
Never lose faith
There’s much too much at stake
Upon myself I must depend
I’m not looking for place or show
I’m gonna win

No stopping now
There’s still a ways to go, oh
Someway, somehow
Whatever it takes, I know
I’ll never quit, no no
I’ll never go down, mm, mm
I’ll make sure they remember my name
A hundred years from now

When it’s all said and done
My once in a lifetime will be back again
Now is the time
To take a stand
Here is my chance
That’s why I’ll…

I’m gonna win.
green pics 2
 
  Dear Lymies,
 
  The other day I was through. Through with life, through with the pain, through with fighting the same battles every day. Every morning I wake up exhausted and push myself to get up and go; every afternoon I survive the driving forces of pain in my body that beg me to lie down and stay down for a long, long, long time; every evening the feeling of numbness crowds my mind as I realize once again that, just like the days, months, and years previous, I will go to bed and wake up the next day, only to encounter the same battles with the same levels of pain and the same side effects of Lyme disease.
 
  “I will do whatever it takes to get better,” says a note card on my bathroom mirror.  I put it there to remind myself that I WILL fight, I WILL get up, I WILL win.
 
green pics 3
  Each day mocks me however, as the pain increases and the side effects of Lyme such as excruciating aches and pains in all my joints and muscles, a cluster of headaches that never go away, debilitating exhaustion, little-to-no energy, and the psychological urge to give up.  These are only a few symptoms. 
 

  When I decide to fight every day and every day it seems like I lose, my self-esteem seems to vanish as though to say, “whatever you are doing, it isn’t enough and whoever you are as a person, you aren’t enough to beat this.”

 
  I fight to maintain a positive attitude and, thanks to 14 years of fighting these battles, I am often able to catch these low self-esteem thoughts before they drag me down to the dark pits of discouragement. 
 
 
Everywhere in my apartment, I have notecards reminding me why I fight, why I fight every day, and why I must continue to fight even if it means battling for years and years.
  green pics 4
  Even if we fall, as we all do, we do not fail.  I had to share the song above as encouragement, and point out those special lines. 
Falling does not mean failing.

“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.

I Got One Too!!

liebster  I re-blogged the post below by juliesspoonfulofsugar,
both because this blogger kindly chose to nominate ME for the same award, and because I think this idea is AWESOME!!   I’m very excited to be nominated
and appreciate the fact that others have recognized my blog as one worth both reading and sharing.
 Below, I have answered the TEN QUESTIONS given me by juliesspoonfulofsugar.
Read HER story in the post below (or at http://juliesspoonfulofsugar.wordpress.com/2013/10/13/wow-an-award/)
Here are my questions and answers:
1. WHAT IS YOUR EARLIEST CHILDHOOD MEMORY?

I was around two years old and my family was leaving California, where my dad had worked for several years at the Air Force base in L.A.  I remember riding in our Suburban and passing St Mary’s hospital, and I remember watching the busy highway traffic pass us by.  I’m an Air Force Brat; moving is in my blood!

2. IF YOU WERE AN ANIMAL, WHAT WOULD YOU BE?

Ahh! I have asked myself this question MANY times because, who knows, I may serve another, different life on this earth after my life as a human being, and if that is the case, I am TOTALLY going to choose my fate by returning as a LADYBUG.  It’s not an animal exactly…but answering with “A MOOSE” would just be too easy, don’t you think? I mean, who WOULDN’T want to come back as such a powerful, masterful, and kick-butt animal? Even so, I believe a ladybug fits my personality better.

3. WHAT WAS YOUR 1ST CAR?

A beautiful red Honda Civic, appropriately named “Juliet” because of her fanciful looks and powerful heart (engine).

4. WHAT IS YOUR CURRENT OBSESSION?
The last season of “The Office” just arrived on Netflix and I am quickly catching up on one of my favorite shows.
5. WHAT ARE YOUR TOP 3 FAVORITE HOBBIES OR ACTIVITIES?

I love to read and am currently devoted to Elizabeth George’s “Inspector Lindley” series, 2) I love to watch TV shows on Netflix, and 3) I love to snuggle with my snuggle-bug dog, Bella.

6. WHAT IS THE COLOR SCHEME IN YOUR LIVING ROOM?
A light, peaceful green garnishes the walls, while burgundy, gold, and different shades of green season the room through flower-filled vases, furniture that consists of a light beige couch, deep burgundy sitting-room couch and a sitting-room chair that contains all the colors in my scheme. Deep brown and black curtains proudly fall almost to the floor as they silently support the color scheme, while side tables and bookshelves in the same deep colors allow the peaceful but royal greens and golds and reds to wash over the spirit of those who visit.
7. DO YOU CONSIDER YOURSELF AN AUDITORY, VISUAL, OR KINISTETIC LEARNER?

Visual, for certain.

8. WHAT 1 EVENT HAS MOST INFLUENCED YOUR LIFE?
At the age of 18 my sister and I vacationed in Puerto Rico for a month.  Words cannot express the beauty of the beaches and upon my return, I had a spirit full of stupidly stubborn determination that carried me from being bedridden, buried in a black pit of depression and pain, to finishing high school, getting my driver’s license, beginning a job and studying at my community college for a degree.  Puerto Rico, for reasons that baffled even me, gave me the stubbornness of spirit that allows me, even now, to push myself harder than I ever knew my body and soul could be pushed in order to have a LIFE.
9. DO YOU PREFER SALTY OR SWEET SNACKS?

Sweet!

10. WHAT RANDOM ACT OF KINDNESS BY SOMEONE TOOK YOU MOST BY SURPRISE?
I had set up an online fundraiser in order to raise funds for my ongoing treatment of chronic Lyme disease.  Describing my personal story with this illness, I reached out as I stubbornly dove into treatment after treatment, finding small successes here and there but no actual healing for my battered body. These small victories came at a very, very costly price and my pockets were emptied time after time.
After setting up this site with my personal story, a gentleman sent me both monetary support and a note, filled with words that spoke from such a GOOD HEART that I actually had tears in my eyes.  Although I had, in a way, worked with this guy in the past, he had taken another post but as it was within a close distance to my location of work, he was able to stop by a few days following this post and exchange a few words.  Ever since, I have thought of him when I think of someone with a good heart.  His random act spoke volumes and made a true impression on me, an impression that has only grown since that act. 
In setting up that site, I never expected the gifts I received from both distant acquaintances and those close to me.  MANY acts of kindness were sent my way, acts that were never expected; by closing date, these acts added up to an amazing number and allowed me to pursue more treatments for my disease.
 

“THE LOSSES OF LYME:” OUR HEALTH

2013-02-27 03.31.56Our health.

It seems so simple that when you first read the title of this, the next installment in “THE LOSSES OF LYME” series, you may well have laughed.
But think about it – with Lyme disease, our bodies can quickly fade into a state of intense fatigue with multiple symptoms such as headaches, muscle or joint pain, joint swelling, as well as a digestive system that breaks down in record speed and a psychological state that threateningly swirls around us as suddenly as a dust storm, surprising us…
Leaving us to wonder…
Wonder why our bodies seemed to have suddenly turned against us, attacking parts of us from our head to our toes with ferocity…
Wondering why the supplements and medications and treatments that we endure seem to make us worse, and not better.  The phrase,
“you will get worse before you get better,”
begins to take on a sarcastic ring in our head after a dozen doctors say that very phrase, and then add to it “well, your body just won’t respond to my (perfect, complete, studied) treatment…you should get some help for that,” when we report that the “worse” has not turned into “better.”
Chronic Lyme patients face the bitter truth that their health, something that most in the world take for granted, is disappearing into thin air with the speed of an F-16 aircraft.
So precious is our health that when we lose it, we face battles that many in the world are never called upon to face.
Having been chronically ill for nearly 14 years I have been through so many “treatment plans” I truly couldn’t even give you a number. I’ve been on every diet under the sun, every medication used for this disease, every multiple medications used for this disease, alternative medications that are recommended, etc, etc; however (despite the ferocious cost that I’ve choked down for the chance that maybe, maybe this will work) these did not “do the trick” and allow my body to begin to heal itself.
  • I’ve tried Chinese Medicine alternate therapies. I’ve tried
  • Colonic hydrotherapy,
  • Sauna therapies,
  • natural IV therapies,
pulsing medications with natural treatments like those I just indicated.
In fact, for a year and a half, I pulsed medications WHILE driving an hour each way to do two natural IV’s a week (natural meaning they were filled to the brim with high amounts of multiple vitamins), then returning home and completing three Sauna therapies, 1hr each, as well as doing three Colonic Therapies EACH WEEK.

CHRONIC LYMIES

will go to EXTRAORDINARY lengths and use AMAZING AMOUNTS of strength

that physically they do not possess but mentally, they hold onto with stubbornness. 

→   BUT HEY…   ←

Let’s take all of my blabbering away and look at something else. Something that tells a thousand words with one glance; a photo of what it takes for a Chronic Lyme patient to attempt with all their might to reverse that incredible loss: their health.
In fact, why not tell a few thousand words?

2013-03-06 05.28.25 »»»   In the photo to the RIGHT:

  •   This entire counter has been dedicated to the requirements for a particular treatment for a chronically-ill Lyme patient from a Doctor. 
  • This counter cannot even fully represent all the items required for this treatment; although carefully organized (as seen by the papers taped in front of each pile), the overall number of items and the mass of piles seen gives you an idea of what a chronic LYMIE can go through to get better.
  • Oh, and by the way, this entire counter represents more than $5000.00 worth of items.
 

2013-03-06 05.30.10

  «««  In the photo to the LEFT:

  •   On the counter you saw above, these elements were included: two types of gloves (sterile and non-sterile), alcohol swabs, and masks.
  •   Have you ever purchased these items? A chronic LYMIE, going through particular treatment for their fragile body, pays for all these items in order to be extremely careful to keep germs and bacteria away.  Both could easily damage nerves, weaken the digestive track’s functions, and allow toxins to build up in their body.
 

2013-03-06 05.39.10

»»»  In the photo to the RIGHT:

  •     An entire calendar has been dedicated to tracking symptoms that a chronic LYMIE experiences as they go through both life’s pain-filled days and particular treatments.  These symptoms are important to record because they not only indicate how the LYMIE is progressing, or not progressing, but the info allows the Doctor to see how their treatment is working within the body of their patient.
  •   In the blue pitcher to the RIGHT, a LYMIE can keep track of exactly how much is spent DURING any treatment they are going through… just from experience, after just one treatment these pharmacy receipts often add up to several thousand dollars.
 
 

2013-03-06 05.36.06  «««  In the photo to the LEFT:

  •     In this treatment, in which all needed articles have been laid out on the counter, Saline is required.  See those tubes wrapped in plastic that are rather falling out of the box marked with an “M” ? Those are Saline Flushes.  Three boxes full of Saline Flushes. (Don’t ask the price),
  •   Next to the three boxes of Saline Flushes you will notice a pile of tubes encased in plastic wrap.
  •   Ever heard of IV Infusion Treatment for chronic Lyme? I have.  I’m familiar with the treatment! Those packages are extra IV tubing that will be used on a daily basis during this particular treatment.  They hook to whatever IV treatment has been prescribed by the Doctor, and then screw into your body like a nut into a bolt. 

LYMIES go through so much just to get better!!! Believe me! It’s incredible what treatments a LYMIE can endure, even though they are chronically ill, in order to simply restore their bodily health to the point where they can FUNCTION. 

 

2013-03-06 05.43.00»»»  In the photo to the RIGHT:

  •   You know, I love tea. It’s relaxing and comforting, especially on a rainy day when curled up with a book.
  •   But tea can be a part of a treatment program for a chronic LYMIE; the boxes to the right contain Green Tea (high in antioxidants and greatly recommended to a LYMIE in the “prescription” of several cups per day), as well as Kambucha (another tea that cleanses your system and provides natural support to your body, but from my experience, tastes awful! If you must drink this truly wonderfully healthy tea, get some healthy sweetener).
  •   Also, tea that contains Magnesium with a fruity flavor is recommended to calm your body and nerves in order to sleep (often called “Sleepytime Tea”).  Tea that contains natural herbs to help “awaken” your foggy, Lyme-filled brain can also be recommended every morning.
  • Countless other teas contain nutrients and supplements that give a LYMIE a bit of a break while on treatment: instead of popping another dozen pills, multiple cups of tea can be made throughout the day.
 

2013-03-06 05.51.03   «««  In the photo to the LEFT:

  Ah, gluten-free food.
  • Chronic Lyme patients, even when not going through intense treatments, often switch to a Gluten-Free diet.  Although they may not be sensitive or allergic to gluten, the diet allows their digestive system to better process the nutrients in other foods and in supplements.
  •   I have been on a gluten-free diet for several years now. Oh, I cheat sometimes; I’m not actually allergic to gluten. But after switching to this diet I can tell you, I noticed that I was not having as much stomach aches and pains and my colon found it easier to process foods down the remainder of the passageway. 
  •   As a chronic LYMIE… I will take what I can get, as far as any relief for my body as it struggles to regain its footing within a healthy world.
2013-03-06 05.51.45My sister sent me this card some time ago and I could not help but display it,
as it always produces a chuckle within my throat and often, a smile on my face. 
  • Isn’t the message exactly what we all want? The straight poop, or, if I can interpret for us chronically-ill LYMIES,
the straight path towards a better life and better health?
We may be sitting on the toilet now, but our goal is to stand up some day and walk away on our own two feet, flushing the past away as we go.
Treatments, treatments, treatments… how many have I been through? How long have I sat on the toilet, crunched down because of exhaustion, fatigue, low spirits, extreme muscle and joint pain, endless migraines and restless sleep?
  • I want it STRAIGHT – I want the straight answer.
  • Every chronic LYMIE does.
Review the thousands of words above, contained in each picture;

do you not see the lengths we LYMIES go to in order to try,

with no guarantee of success,

to get better

and regain our health?

“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

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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.