Beginning three weeks ago, I had a two week period where I was feeling almost human again.  At first, I still took it easy.  I was careful to not over do and get plenty of rest.  However, I continued to feel better, so I stepped it up a notched.  Then life became demanding and I went even further.  Weekend befor last, I developed a sore throat and an ear ache.  Even with this, I continued on.  All last week, I began to run low grade fevers again and feeling quite nasty at times.  The fatigue would hit ramdomly.  I would find myself pulling my way up the stairs at work and feeling like I wasn't going to make it.  The internal tremors came back in full force. 

 During that week, life went haywire.  Work became incredibly demanding.  I was even bringing home work, causing me to work 10-16 hour days and on the weekends.  The homelife became stressed.  I was basically told that I should stay in my room (I live with "family" at the moment), help clean the house more, but I could come out and eat dinner with them on occasion.  My finances are stressed right now.  For some reason this week, the people that I live with have been staying up late (until 3 or 4 in the morning.  They watch movies with the surround sound on and laugh/talk very loudly.  I have issues getting to sleep and staying that way.  I would get to sleep really late and then up at 4:30 am to go to work.  So, I pushed myself to get everything  done.   BIG MISTAKE!

Friday, at work, I began feeling poorly.  As the day went on, it became worse.  By the time that evening rolled around, I was done for.  My whole body ached.  My eye lashes even hurt.  I could barely walk and was quite incoherant.  I went to bed early but then woke with night sweats, sick on my stomach and raging fevers all night.  Saturday, I slept all day.  I was suppose to go out Saturday night.  I was so excited.  I hadn't been out anywhere in such a long time.  I had to cancel. 

Today, Sunday, I'm still very tired, running fevers and just feel all around funky.  I'm almost at my wits end...maybe I'll be more positive tomorrow. 

You may have heard, in the past, that you need to find balance in your life.  That's wonderful in theory, but how do you find balance when your life has been tilted by an illness?  Itdoesn't matter if it's cancer or EBV, short term or long term, when an illness strikes you - your world not only tilts but can flip spilling everything into a giant mess on the floor.  Try to balance that out!

You never can plan because you may get up that day and not be able to go three feet from the bed due to the symptoms of your illness.  You feel like your family and friends are being neglected when you have to "rest" as the doctor ordered.  At your place of work or even just the daily grind of home life, your productivity isn't at the level that it should be.  So, how do we then keep balance?

A little tilting keeps things interesting...

If life were the same all the time, we'd get bored.  I'm convinced that the spice of life, which can be bad or good depending on your view of things, are the things that keep us growing, developing, learning and interested.  For instance, had I not found out that I had CEBV and CFS, I would not have ever known that it existed.  My research on it, along with advice from my doctor, encouraged my research on nutrition.  This led to my eating healthier and losing 25 lbs. in the process.  (The weight loss was a side effect of not wanting to feel that bad for the rest of my life.)  Without this tilt, I would have never met the wonderful people on this site that I have.

Lessons

There are always lessons to be learned in life.  Some are welcomed and others are hard, uneasy lessons to learn.  Along with learning about this virus and proper nutrition, there are other lessons that I have come into contact with.  I've learned to rest.  I've always been one to push myself.  I'm learning to take time to let my body have the rest that it needs.  I've learned to appreciate and make the most of the time when I do feel well.  My time is more productive, and I've re-evaluated my priorities because of my illness.  I'm learning how to de-stress.  When things around me are going nuts, I've found ways to reduce my stress.  I'm also learning how to take care of myself.  This isn't something that comes easy for me.  Besides pushing myself, I never knew how to eat properly and generally take care of all aspects of my well being.  I'm learning to be pro-active in my recovery, doctor visits and daily life.

Goals

I've always been one to set goals both immeadiate and long term.  Life changes and so we must re-evaluate our goals.  Some days, I have to live moment to moment.  So, my goals are reset to accomodate the situation at hand.  It makes a person feel accomplished when they reach or completed a goal.  In addition, it inspires a person to strive for the next.  It's important to take a little time and look at your progress.  Equally, you should identify your weaknesses, realize the cause and make the appropriate adjustments to better deal with the situation or a simular situation next time. 

Attitude

It's amazing how one's attitude can effect the world around you and with in you.  If I felt sorry for myself and let this get to me (and I'm very accomplished at this; years of practiced self blame and feeling sorry for little 'ole me), I don't believe that I would have made the progress that I've made.  My peers and managers at work wouldn't work around my illness as well if I outwardly showed that this was getting to me emotionally.  Just today, I had to council an employee on his negative behavior toward another employee, which was in response to his co-worker being stubburn and strong willed.  I explained that if he continued to use negative verbage and phrases, that the friction would continue.  However, if he were to think before he spoke and continually used positive verbage and statements, that he would see a change in his co-worker's language and behavior.  I challenged him to change his reactions and responses to more positive ones.  I gave him examples of how to handle certain situations.  I will follow up with him in a week to see if this has produced any changes in the situation while keeping a close eye on the situation in the mean time to make sure that he is following through with the plan.  Changing your attitude and reactions to situations and people can reduce stress, causing positive effects on your health and well being. 

It isn't easy keeping balance when life throws you a curve.  It's not always easy to stay positive.  I still break down.  I cry when it hurts too much and when I get overly frustrated from feeling so bad all of the time.  It's ok when I do too.  Don't dwell on your breakdown and don't fight it.  Work through them.  These feelings are natural, but don't let them keep you down for long.  Fight for balance.  Watch the table of life straighten back up.  It will tilt again, but as you deal with the tilts and flips, you'll be stronger and more equipped than the last time!

(I wrote this when I was feeling pretty yucky one day.)

Dreams

She held them there in her hands; those dreams that were so dear

They comforted her; they gave her hope.

Once upon a time, she lived; The gentle wind made her laugh

The Sun was her constant friend; The moon was her masterful lover

Until the day, the day that it all changed; The clouds followed her

The rain came from above and below; Her heart flooded

Dread and fear became her companion; Emptiness filled her world

The ocean became dark; The sand was made of glass shards

On the horizon, there was a dim light; As she drew near, the glow brightened

She met the light with curiosity; The light welcomed her

She again held dreams in her hands; New dreams that were so dear

Their comfort filled her heart; They gave her hope to live once again

I've been living with my little brother and his family for a while now.  It started that I would be helping them out as they are a young family just starting.  That and I needed a placefast.  

Things started great and then I became ill again.   Once I did find out what I had, I explained it to them the best that I could.  I offered websites and forums so they could get a feel for what was going on with me.  By this time, I didn't go many places with them for fear of feeling bad and ruining everyone's day.  This has taken a toll on them and produced strain in our relationship. 

On the other hand, they haven't taken any steps to understand what is going on with me.  All they see is me sleeping all the time or coming home from work and falling into my bed for the evening.  I  don't like to burden anyone, so I don't talk about it a whole lot.  Besides, when I do mention it, I'm told that I just need to get up and move around more - yeah, right.  My brother is a musician, and he took it upon himself to write a bluesy impromtu song about how I sleep all the time.  Though he was joking, I found that my feelings were injured.  Then there's the Virus syndrome:  "It's a virus, you should be over it in a few days."

My mother is the only one who seems to show any kind of sympathy, but even that took lots of explaining and showing her websites to back up what I was saying.  I'm not completely sure if she understands or just got tired of me saying I was tired.

Currently, I'm single.  I enjoy being single, however, if a man were to come along that I could stand to be with more than 20 mins (joking, really I do love men), then how do you start a relationship with CEBV. 

Do you say, "Hey, you're someone I'd like to get to know.  Let me take a nap first and then we'll work on that."

Or possibly, "I have CEBV.  We can't kiss.  I'll need to sleep often and I just don't think I feel good enough to go out tonight, but call me tomorrow."

How do you tell someone that by kissing them, you could possibly give them what feels like the flu for the next eight months?  "Oh, and by the way, mine is chronic and I may always feel like I have the flu for the rest of our lives together."

This is a very lonely disease on the whole.  You may look just fine, but your body is telling you something very different.  Chronic fatigue can hit at any moment.  Also, low grade fevers and achiness can chime in.  Yesterday, you were full of energy and hope - today, you are hurting and frustrated. 

In February of 2008, I was diagnosed with Chronic Epstein Barr Virus.  I've never had mono and the symptoms have been on going for seven years.  Now, seven years ago, my brother had Mono.  I had been staying with him at this time, so it's possible that I contracted it from him through sharing drinks or taking a bite off of his fork or spoon and vise versa.

Upon diagnosis, I felt relief.  One, I wasn't nuts.  Two, it all began to make sense.  I run low grade fevers and feel like I have the flu most of the time.  What made me go to the Doctor - again - was the Chronic Fatigue that seem to follow me every where, no matter what I did and didn't do.  There is a flight of stairs at work that, normally, I bounce up with no problems.  However, some days, I'm leaning against the railing, struggling to pull myself up and wondering if I'm going to make it.  there are so many symptoms and issues that it's hard to sit here and think of all of them.

 When I contract a cold or the flu, it takes me five times longer to recover than everyone else.  This also seems to pull the virus out of remission and start the cycle all over again.  My immune system is seemingly non-existant at this point.

During Christmas of 2006, I came down with a horrible cold.  It was May of the following year before I felt like I could breathe again.  Also, in April of 2007, I miscarried.  I can't help but wonder if this virus contributed to that in some way.  It's strange, but I still have morning sickness every morning.  It's as if the symptoms never went away. 

I praise God that I have never had to quit my job.  I work with a wonderful group of people in an Internationally known Corporation, who have been understanding and allowed me to do what I need to do.  They've also made it possible for me to work from home when I need to do so.  I feel for those that have not been as fortunate.

 Additionally, I've been blessed with an understanding Doctor who thought, at the last minute (as the blood samples were going out the door), to test for EVB.