“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. 

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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

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Hangin’ with my LYMIES

 

Funny-Dog-Glasses-Guitar

This past weekend I had a dear friend drive a considerable distance to hang out with me.

She and I both have Lyme and have suffered many of the same side effects. We have gone through many trials in life that relate our lives with Lyme and, being close in age, we know how Lyme has robbed us of certain aspects of our youth.

It’s so easy to chat with her (naturally, being girls chatting was a huge part of our time together).  I would name a supplement or medication I had been on and she was often familiar with it…she would tell me about a new product she was trying and I would often know what it was…she would name a symptom, and I could sympathize.

Many friends tend to tire of someone with chronic Lyme disease after they cancel an appointment or two to hang out 
because they feel like crap, or refuse to make concrete plans because of the day-to-day unknowns of how our bodies will feel.  A fellow Lymie on the other hand, like this friend, is extremely sensitive to this, as am I. 

These attributes can often leave a Lymie friendless; both my friend and I have experienced this during our struggles.  

Hangin’ with a Lymie however, ESPECIALLY one in my age bracket who GETS IT and who can understand the ramifications of the disease is a

refreshing, renewing blessing beyond belief. 

It’s Okay for Chronically Ill People to Get Out every Once in a While

Did you know that

It is okay

for chronically ill young people,

who spend most of their waking hours in incredible pain tackling not only the enormous challenge of getting better, but also the challenges of finances, future and relationships?

  I have to remind myself of this truth sometimes!  The other day I completed all of the items on my health protocol list – an AMAZING feat for me!! When a friend offered me some time out, I decided… you know, I have completed, what is for me, an amazing schedule today and have kicked butt for my doctors and for my health.  Getting out of these four walls to fall asleep on somebody else’s couch sounded nice!

 Unfortunately, I imagine that due to pain levels, loss of energy and strained finances, many chronically ill young people do not feel that recreational fun is something they can indulge in; at least, this is how I FEEL all the time!!! Guilt often overtakes me when I strive to do something, anything, that is just a little bit “wild” or crazy… for me, that includes something as simple as getting an ice cream cone at McDonalds (no joke).  But the guilt sometimes holds me back – I have bills to pay, arguments to think over before calling my insurance company (so that I don’t forget what I’m arguing about), insurance claims to send in, prescriptions to renew or pick up, supplements to order, and chores such as laundry and taking out the trash as well as walking and taking care of my dog.

Oh yeah.  I definitely see some fun and crazy times ahead in that schedule.

If I did not celebrate the fact that I get through

EVERY FRICKIN’ DAY,

accomplishing at least one thing (still breathing, right?) and hopefully a few more while juggling this immense burden on my shoulders (re-read the above paragraph if you need proof of the use of the word immense), then let me tell you something…

  NOT doing crazy stuff would MAKE me crazy.

  Hey, that’s a good sentence.

That sums up everything I just said – and THAT, dudes, is WHY it is okay for chronically ill people to get out, get away and go crazy every once in a while.