Illness and Jealousy

Laying on the couch, watching a show. That is a common custom with me, as it relaxes me and lays some of the stress to rest. There are times however, when my mind is on anything but the show, as was the situation today. I started thinking about Lyme, and sickness, and being sick while dealing with jobs, family, relationships…and jealousy.

Has anyone ever been jealous of you because you are sick?   In a way, people should be very jealous of those with chronic illnesses because of the maturity they acquire just from living daily life. Think about it: those who are sick deal with multiple major stressors every hour of every day, they deal with living with others but feeling completely alone because of their illness, they climb the mountains of financial struggle, inadequate doctors, and medications that don’t cut it. But are you jealous of them because of all this?

Earlier this year, I dealt with people who were jealous of me.   Of course they never came right out and told me what they were jealous about, but I eventually figured out that it had something to do with my dedication towards making myself a better person (health wise and otherwise) along with the intense concentration I gave towards each barrier thrown in my path. These qualities are really lessons that I have learned because of having Lyme.

At first, it boggled my mind. Jealous of me? I mean, come on, who wants my life? Who wants to be sick every minute of every day? Then I realized that they were not jealous of my life. They were jealous of the person I had become because of my life.

That jealously was so intense it amazed me. They threw everything they had into trying to smear my reputation as an honest but dedicated person. Their fight against me was trying, I cannot deny, as lies were spread and delicious rumors among the social world abounded. I grew tired of their attitude and began to tune them out of my life because of the draining effect they were beginning to have on me.   It still puzzled me at the time, why they were trying to tear me down. But it makes sense now.

Because of my 15-year struggle with Lyme disease, I have grown so much and faster than many of my peers, simply because I had to.   Dealing with such intense pain on an every-day basis has made me humble. It has brought me down to earth as far as dreams and goals are concerned and made me face the life I will likely lead forever head-on. It has given me the ability to listen to others, and to understand and sympathize with their pain. It has made me stronger in spirit and more honest. It has broken me a thousand times, and I have stood back up a thousand more. Don’t get me wrong; I have a long, long, long way to go. But thanks to Lyme, I have come a long way.

Jealous of me? Jealous of us? You know what, others should be jealous because they haven’t fought the fight we have and come out stronger in the end. I wouldn’t wish Lyme disease or chronic illness on anyone. But I now understand why someone could be jealous of me and jealous of those who are ill. It shows me that illness can make a person stronger, warmer and more generous, smarter, braver…and so, so, so much more.

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Sorry Again, I Have Lyme

  A week or so ago, I invited a friend to dinner.  We hadn’t seen each other in quite a while and I wanted to catch up on their life.  When the day of the set appointment arrived however, I had to cancel; my Lyme was flaring up and I couldn’t safely get out of the house and drive, let alone keep up an intelligent conversation with another human being.
“Sorry, I have Lyme.” It’s a true reason for not being able to do something, although many people do not understand how complicated the disease can get and how Lyme can get in the way of life so very often.
  I rescheduled with my friend, hoping that the next date would bring sunny skies and less pain. Unfortunately, that day was worse; I couldn’t even get out of bed all afternoon.
“Sorry again, I have Lyme.”  I tried explaining my circumstances as best as I could, in such a way that someone without Lyme would understand.  Instead of rescheduling yet again, I suggested we catch up over text messaging, something I can do in bed or on the couch fairly easily. THAT plan worked.
  It bugs me when Lyme gets in the way of my life. But I have no control over the matter and must except what each day brings.  It’s discouraging when basic social outings cannot be accomplished because of how ill I feel, and depressing when I must stay inside on my couch instead of enjoy the company of friends.  However, as I learn my limits, I learn that I can still communicate via text or phone with friends and family. It isn’t the same thing as actually seeing them, but it is better than having no communication whatsoever. And it’s certainly better than saying, again and again, “sorry, I have Lyme.”

“THE LOSSES OF LYME:” BELIEVING IN THE POSITIVE, 2nd post

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As mentioned in my previous post

(THE LOSSES OF LYME: BELIEVING IN THE POSITIVE),

the struggle to simply live life as a LYMIE has a tremendous effect on your outlook of life.  It can get so unbelievable difficult and for good reason; with high levels of pain, muscle and joint aches, headaches, immune deficiencies and fatigue, the thoughts running through your brain easily tends towards a loss of hope and impatience to heal.

The last thing you want to spend energy on is making sure you have a bright smile for everyone you meet, an encouraging word for friends you talk to, and an ability to see the bigger picture.

It took me almost 8 months to find medications that helped my brain over the “hump” of the inability to view life with any kind of positive attitude.  For a long time I thought this inability was my own fault.  It took years to understand that depression and anxiety, by themselves, are illnesses; it took even longer to realize that my depression and anxiety came from chronic Lyme disease.

It isn’t easy, getting through these side effects.  I truly believe that the psychological ramifications of Lyme can be more difficult to deal with than the pain that hits your body.

It’s so easy to focus on the negative – in fact, because of how depleted our systems are of basic nutrients and the ability to fight the battle that rages within due to Lyme disease and co-infections, the negative aspect of life simply surrounds us and threatens our souls, not to mention our individual personalities.

When I began putting quotes on my bathroom mirror, where I was “forced” to read them daily no matter how crappy my day was, the quotes began to shine through the glass… they reminded me that I, SHELBY, am NOT Lyme disease…yes, my LIFE is Lyme disease right now, but my INDIVIDUAL SELF IS NOT LYME.  Because my personality is daily pounded by a tremendous force that hits my body with crashing waves every day, it has truly been good for me to see quotes or sayings that remind me that I still have a personality.

And it will, some day, shine through like a beacon instead of inching its way through the fog of pain and fatigue.

Below are some quotes that are totally me – they are my personality, they are my positive influence, they remind me I’m not a disease.

YOU are not your disease, dear reader. YOU are YOU, even if you don’t recognize yourself at times.

 

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What Is Courage

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A wonderful and trusted friend

asked how I was doing this evening.

General acquaintances often ask this question because culturally, it is a polite greeting and comes with an expected, generic answer.

But for a trusted friend my answer becomes more personal.

“Ah, well – overwhelming… Trying to just keep up with life, even though it seems as though LIFE is rushing past me uncontrollably because I can’t keep up,” I replied.
  •  For someone with chronic Lyme disease, it takes courage to face life.

Heck, it takes courage to get out of bed and face a new day, knowing that you will go through hours of incredible pain, knowing the day will most-likely include some (if not all!) of the following:
  • fatigue and physical exhaustion/headaches/chills/muscle aches and joint pain/swelling in your joints/nausea/shortness of breath/brain fog/dizziness/and staying on top of the protocol (program) that can include taking medications and supplements four-six times per day at specific times, consuming the proper amount of clean water, eating healthy foods (often gluten/dairy/sugar-free foods), consuming supplements for detox (such as green tea),

  • (the list goes on and on)

I was young when I started to face strange symptoms that could not be accounted for; now,  after over a decade of life with chronic LYME disease I have a few definitions of what courage means:
  • courage often means simply getting out of bed

  • it means placing one foot in front of the other, and getting through each day hour by hour

  • courage is knowing that each day you will face challenges you have already battled a thousand times before, and choosing to fight those again morning after morning.

 
Courage is trying while crying.  For every other young person with chronic LYME disease, don’t forget this truth:

COURAGE IS TRYING WHILE CRYING. 

Great Fears, Secret Weapons

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“Let me not pray to be sheltered from dangers,

but to be fearless in facing them.

Let me not beg for the stilling of my pain,

but for the heart to conquer it. “

~ Rabindranath Tagore

 

  Sometimes I lie in bed,

terrified of what the next day will bring.

  • More pain, more discouragement?
  •   Will I have any strength to believe that hope lies somewhere at the end of this tunnel?  Hope that dreams, currently stowed away and collecting dust from necessity, will one day be dusted off and accomplished?
  •   Will I give into the temptation to give up?

 

  A few mornings ago I awoke with these fears, especially the fear that I would not be able to get up and function like I needed to for that day.  My heart was thumping loudly and I sorely wanted to pull the covers over my head and just wait for the day to end.  When I finally got up, I took one step at a time: picking out my clothes, taking a shower, feeding my dog.  It was, honestly, a minute-by-minute, mind-over-matter concentration to keep me from a flooding amount of anxiety.

 Half-way through the day, I was still experiencing anxiety and a great desire to freak-out.  But I was half-way through the day.  I concentrated on the next hour, and the next, tears threatening as my brain slowly lost the small spark of power that flickered throughout the morning.

  Guess what: I got through the day.  The next day was better, although days such as the one described above come frequently.  To my other LYMIES experiencing similar troubles as they struggle through youth and adulthood… It often is not day-by-day endurance required of us… it is hour-by-hour, or moment by moment. 

 Let me, however, share ONE secret that, while containing no vitamin, mineral or strictly medicinal substances,  has the potential to cheer your SOUL.  It does for me, although some may read the following and brush it aside as stupidity and helpless advice for those who are truly suffering (and not so long ago I would have said the exact same thing, please understand); but after nearly 14 years of experience, I know that every chronically ill person needs a “secret weapon” or a “secret” to help their soul through those dark days.  Here is one of MINE:

  While walking outdoors I often stare downwards towards the ground (reasons: acute sensitivity to light/no energy to hold head up/no energy to talk to those I pass) and in so doing, I come across stray pennies from time to time. 

 I pick up that penny, make a wish on it, and then put it on the dashboard of my car.  Every time I see it, it cheers me because it has imagination sprinkled with fairy dust and a magical quality that no one else but I can understand.  Though my wish may not come true, those pennies contain magic; they are carried on shooting stars to places beyond my knowledge, beyond my pain, beyond any suffering, while being tucked away as a fun and precious memory in my heart. 

  When passing by a fountain, I love to stop and throw a penny in as well, again sending it off with a wish and a sprinkling of fairy dust.  Oh, I know magical places do not exist…

but during days that are sometimes only filled with existence and no life due to pain and chronic illness, the thought of my “magic” pennies keeps my childish spirit alive while my body ages quickly. 

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Ever Feel Like Your Brain Isn’t Attached?

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In the past several weeks, this symptom has especially rung true with me: I walk around feeling as though my brain/skull/head would not be with me if it was not attached.

  • Overwhelmed by life/
  • lack of sleep/
  • extreme pain/
  • physical and emotional side effects from medications that simply must be endured… all these things and more have attributed to the acute feelings that, as I take steps around my home, no original thoughts are passing through my brain, I simply walk without truly thinking about my destination, and carrying on a conversation exhausts me after three or four minutes have passed. 

These feelings make me, well, feel as though if my brain (inside my head) was not firmly attached by bone and muscle to my neck and shoulders it simply would be seen elsewhere, perhaps taking a break for the day in the sunroom or at the spa getting a facial (lol). 

This is no new development, but my thoughts led me to the  photo above which I could not resist sharing with my followers.  On some level, we all have days where we feel as though our brain has left the building. 

 

 

My Bathroom is Magical…

Magical_Forest_STOCK_by_wyldraven   Be Honest…

  With a title like that, how could you NOT read this post?

 

Think about this: what is the ONE room that you simply cannot avoid during the day?

A counselor I went to years ago suggested that I grab some post-it notes or index cards and write down quotes that I find inspirational then put them up in my bathroom.  This way, every day, it is guaranteed that I will see this encouragement several times between sunrise and sunset.

Two years ago, I finally acknowledged that my health was steadily going downhill and without severe changes, my adulthood would be a life full of unfulfilled goals with a large amount of dependence on my family.  I resolved at that time that my health came above other pursuits, such as dating, college and most of a social life. 

Two years ago I decided that my health needed addressing and that I would have to be “in it to win it” to get through however long it took for my body to heal.  I bought a simply magnet frame and stuck it to my bathroom mirror, and everyday for two years I have looked at this particular saying

“I WILL  DO WHATEVER IT TAKES TO GET BETTER.”

  • Other post-it notes are stuck along the walls and to the mirror.  Here is an example: “Do not dwell on the past. Do not dream of the future.  Concentrate your mind on the present moment.” This quote comes from a favorite figure, Buddha, while other quotes are simple reminders to keep going, maintain my self-worth.  
  •   To view other inspirational quotes and sayings that bring magic to my bathroom (the magic lies in the encouragement and inspiration that comes from seeing these quotes multiple times per day), view my other blog: http://www.bellaquotes.wordpress.com

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Those Who Watch Over Us

                                                                   

This past weekend, I put my parents through a bit of drama.   6906725-cartoon-brown-yak

 

Not intentionally you understand… you see, the frontal lobe of my brain, which controls my emotional levels, is highly inflamed.  Last fall I went to the Amen Clinic in Reston, VA and took multiple BrainSpect scans (scans that show your brain in a highly magnified way like no MRI or CAT scan could ever accomplish).  After discovering my condition, Dr A (a HIGHLY skilled physician) and I came up with a plan of attack to bring down the inflammation.

This issue is most likely caused by Lyme, although no study I know of  has been completed to ensure that statement and no test can prove it at present; but knowing what I know about Lyme, YEAH…

 So, I’ve had this issue for years and honestly, when I was younger I would have emotional rollercoaster rides and flairs that no young person should EVER have to endure.   They were my first taste of hellSince then I have come up with a whole list of “How to Deal” that includes

  • yoga,
  • deep breathing exercises,

retail therapy,

etc etc.  My coping techniques have improved to the point that Dr A astonishingly admitted I was almost light-years beyond what my scans showed.

NOW, you can hear my “drama” story.  It’s quite silly, really.

I need new curtains, and with curtains I require blackout behind them because of the extreme sensitivity to light that I have.

My mother, God bless her, has relieved me of the added burden of trying to locate good, cheap curtains that fulfil my requirements.

  As I was watching tv this past weekend my Mom knocked on my door, and began to discuss curtains.  She mentioned a style that we had never discussed beforeor so I thought.  My emotions were obviously highly inflamed because all of a sudden I panicked, lost control of my brain and wondered if we HAD discussed this style and I was not remembering!

Stressed and strained, I hurriedly interrupted and asked her if we had talked about this before; startled, she began again, assuring me we had not, but that she had found this style online and it was cheaper.  However, my emotions were off and running and heaven help those in the way

  She then brought up a subject we HAD discussed and come to a conclusion on (or so I thought); TEARS now blurred my eyes as I jerked forward and asked her if we had somewhere along the line, changed our minds…again startled by my highly charged state, she said no, but that she wanted to keep the option open “just in case.” 

No, no, no! I could not keep an option open, I had decided and the subject was not to come up again…my brain is on the edge, this will overwhelm it and push it past the sanity I barely possess! Please, don’t you know that the less I have on my mind, the better?

Ah, now the tears were running, now the shaking was obvious and my mother, who never dreamed that simply trying to keep an option open in case I changed my mind would cause my already stressed-out mind to blow, and burden my shoulders even more with “one more thing to think about when I had already decided!”

This is NOT normal behavior for me. HELLO, inflamed brain!!  But I love my mother to death, and I felt horrible that SHE, of all people, should be the recipient off such behavior.

I apologized in time, once I hushed the tears, breathed deeply and let enough time pass that my heart was beating normally. 

Those with serious illness go through episodes where the smallest change, the smallest comment or even the smallest change in weather can overwhelm them both physically and emotionally. Often they believe it is their fault for getting overwhelmed; at least, this was true of ME.  For years, I believed that the fault lay with me, and fought long and hard to gain control when the world crashed in and threatened my sanity.

It took years for me to understand and believe that the feelings of going crazy, becoming emotionally charged by the stupidest thing (read above), or suddenly wondering how I would ever make it through the next day

were emotional and mental side effects of Lyme disease.

Let me just be clear, people…I f***ing hate Lyme disease.

Just watch though… my next fit (there goes the inflammation) will be about my eyebrows, or spilling my water on the carpet, or how I still use plastic bags instead of the “going green” thingies….you know, something stupid.

At least it will provide an amusing story.

The quote below is dedicated to my mother, my father, and all those who care for their ill loved ones and endure our crap.

 

My inspiration comes from those who stay up all night with a sick child, a sick friend, a sick relative.  My inspiration comes from those who give up their personal dreams to take care of that sick child, that sick friend, that sick relativeMy inspiration comes from those who believe in their loved one…even when that child, friend or relative has stopped believing in themselves.

My inspiration comes from those people, because I have seen themI have witnessed their compassion, love and selflessness and have marveled in the strength of their spirit.  For it is that quiet strength, that strength that inspires another person to believe in themselves and achieve goals that attest to strength they never knew they could have, that is the most amazing strength in this world.”

~anonymous

…a quote that I SOO want to apply to me through chronic illness

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  “I can be changed by what happens to me, but I refused to be reduced by it.”  – maya angelou

If I get through each day, refusing to be reduced by my particular adversity…

well, I would consider myself a superhero.

  Since I so clearly am NOT, I would settle for perhaps looking over the past several months or years and seeing how chronic illness has affected my character.  First of all, there are many days when I wonder what my character and my personality ARE (another lovely symptom of LYME), but one thing stands out to me.

I keep trying.

A mentor once watched me go through an intense time in the workplace and said little as I struggled to get through it intact.  Afterwards however, he had this comment to make: “You kept coming to work.  That was what impressed me the most.  You never missed a day.”

Days or weeks may feel like we are taking steps backwards in our fight… how I know the feeling. But we keep trying.  Lyme patients impress me with that character quality more than many others I know: they keep trying, often against incredible odds.

Lyme can Make you feel Incredibly…Alone

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 It’s hard to explain.

 

  Ever walk through a crowded mall, but hear nothing except your own thoughts twirling inside your head?  People bump into you but you feel removed from them somehome, as if you are having an out-of-body experience?

 

  A symptom of Lyme is this incredible feeling of being completely alone even while surrounding yourself with people or keeping yourself as busy as possible.  That is why I watch a re-run of an “I Love Lucy” show every day – it’s familiar.  I know the characters.  There is nothing new, nothing overwhelming.  It does not create a lonely atmosphere.