It’s Not Easy Being Home/How I Lost My Job

February 28th, 2015
It’s funny, being out of work due to illness. Spending so much time indoors changes you. When working I was guaranteed to be out and about every day, however now I sometimes spend weeks without starting up my car.
I’ve found that the great indoors fools with my mind. Once, I was full of self-confidence. Now I find I doubt myself all the time.   Questions such as the following constantly flood my brain: can I try and succeed at something new? What if I fail at a task, like I did towards the end of my previous employment (due to illness, but still I felt that I failed at keeping up with a normal job)? What if I can’t learn or catch on to a new undertaking?
Adjusting to life at home has had its rewards, but I feel like my brain is pulled in two different directions. On the one hand, I’ve proved to myself a million times over in the past that I can try and succeed at new things. On the other hand, I have been removed from serious employment long enough to think, will I ever do well at something outside of this house?
Perhaps more time on the couch will reveal the answer and boost my self-confidence. That would be nice, since my self-confidence has taken a real dive in the past months. It’s not easy being home.
Have I ever told you how I lost my job?

May 2014

Dear Journal,

 I’m 27 years old and have fought Lyme for over fourteen years. However, I just experienced one of the lowest experiences I’ve ever had throughout my years of fighting. To put it lightly, it was hell.

I’ve been back at work for several weeks now; after over five months on Antibiotic IV Infusions, I was done with the unsuccessful treatment and ready to move on. My stress level was high at the time, owing to the fact that I had recently received the news that my boss was trying to fire me while I was on Medical Leave from work.

Fighting for my health, fighting for my job, I managed to begin to form a plan on how to proceed physically and I made a pain in the ass of myself, by constantly calling and emailing higher management within my company to try and save my job. Although I loved my job and appreciated it’s close location and relaxed atmosphere, mostly I wanted to prove to my boss that I would not take his bullshit lying down.

I saved my job, and walked back into work with my head held high. Although able to do the physical job itself, it became immediately clear that rumors and gossip had been spread about me and my coworkers not only avoided me, they disliked me to a great degree.

   Walking into a room meant walking into many conversations discussing yours truly and the ways I had ruined something, anything. I heard accusations, said in front of my face so that I was meant to hear them, that shocked my mind. Fueled by the fierce jealousy of a young woman who, for someone reason, had taken up the sword of jealously against me some time ago, the atmosphere continued to be… almost unbearable.

This girl did everything in her power to undermine me and point out my mistakes. Once, I made an error and she gleefully, as I looked on, walked up to each of my coworkers and discussed it with them. Anytime I colored outside the lines I was punished by her in some way. One day I had had enough and snapped in a frustrated, though only slightly, attitude and made the fatal mistake of indirectly questioning her ability to do her job (which, strangely enough, was simply to write information on a chalkboard). She, in turn, had my boss publicly question my professionalism in the workplace.

Towards the end of that particular day I was fighting back tears… tears that had come unbidden to my eyes as a survival tool for my body. My chronic illness and the symptoms that go with it began to take over my body.   I fought back two anxiety attacks, before rushing to my car and driving to a remote location where no one would see me.   I parked my car and immediately began to cry.

Gasping and clenching my hands took over before tears began to flow. I fought for air and leaned my head against my steering wheel as the depression, anxiety and exhaustion took over. I passed out three times in my car because of my desperate gasps for air as I cried with overpowering emotions.

“Why me? Not me, please, not me, please, please not me.” I screamed to no one. My car alone knew how truly ill I was beginning to feel. As I passed out again and again, I lost control of my senses and my ability to control anything in my body. Although my workplace had pushed me to this desperate point my Lyme was showing its true colors as it took over my body.

After that day, things changed. I could no longer handle the jealousy, the gossip, the rumors, and the accusations. Although I tried to simply due my job and not pay attention to the rest, my Lyme disease had changed me and proved to me that it was time to leave.

February 28th, 2015
This story was written almost a year ago, although I never posted it. Recently I was re-reading it and it brought to mind other Lymies who have gone through similar experiences in losing their jobs. Posting this story now seems like a good idea, as I want to reach out to those who have lost employment and say, you may be home but you are not alone. You are not alone! Take heart, for there are others out there who know what it is like to leave employment because of their health. Know that I am one of them.
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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.

Pills, Pills, Pills

As a chronically ill Lyme patient, there are always areas within my body that need treatment. This treatment often comes in the form of medication or supplements.   Although I take enough of both to choke a horse, I understand why I am taking them and how they are intended to build up and heal my overloaded system. pills picture

 

The responsibility of taking multiple prescribed medications and recommended supplements never dissipates, however. In fact, that responsibility is constantly tested because my doctor and I are constantly adding more pills to my regimen. For example, I had a doctor’s appointment a few days ago and after going over some recent tests I had completed, my doctor appointed me three new medications and two new supplements. There was no nay-saying from me; on the tests my body showed signs of great weakness in several areas and therefore getting on helpful medications and supplements (including homeopathic remedies) was an excellent way to go about treating those weaknesses.

 

   However, the fact remains that my days are filled with a multitude of pills. My 40-plus pills per day treatment plan have increased to close to fifty pills per day. For some LYMIES out there, this is nothing; for others, this amount is overwhelming.   I’ve grown to accept the fact that my life cannot be lived without piles of pills, but I must claim constant bouts of discouragement when I face the many bottles of medications and supplements in my room. There are so many! Yes, they are all for a good cause, but goodness me, sometimes I wonder how my stomach makes room for them all.

 

Pills, pills, pills. Part of a LYMIE’S life.

Someday I should calculate how many pills I take per year. I imagine that number would astound more than myself!

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.”

For my Lymies

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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

Support Your Local Pharmacy

  In the past ten days, I have made multiple trips to the local pharmacy in order to pick up medications. This scenario is nothing new; I have so many medications that I am a frequent customer, both dropping off prescriptions and picking up more medications.  pharmacist1

  I don’t think the pharmacy would still exist without me as a customer. Not only do I have a ton of medications due to the complications of chronic Lyme, but many of the medications are very expensive.

  Many Lyme patients experience the same scenario: they have necessary hard-hitting medications, but are forced to pay unreasonable prices at their local pharmacy for these meds.

  Without Lyme patients, do you think half of the pharmacies would exist around us? I’m not sure if mine would! They get more of my money than is believable. However, I must have the meds, so what can I do?

prescription_pharmacy

  Support your local pharmacy.  Have Lyme disease.

“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.