To be Sick is the Greatest

Someone said to me "Is being sick the greatest?" That challenged my already low self-esteem and weakened body.  I know what it meant.  As a normal/healthy person, he thinks he can compare tiredness with chronic fatigue.  Even measure exhaustion with the amount of energy used.  Just because he uses more physical strength at work than me. Isn't it feigned  ignorance?  I am on anti-viral chemotherapy, have Fibromyalgia, need to medicate in order to function, struggling with the symptoms and the side effects of therapy.  The MRI approaching will soon add another new diagnosis of facet joint disease.

I am fighting hard not to lose this battle to work stress or the side effects. I am struggling everyday to get up and off to work.  I am struggling every moment to keep up and not slack in my work.  I get through the day minute by minute. I want to prove to myself that I can be as normal.  I want to prove to others that I make it despite of all my shortcomings.  I don't want to lose my job. I want to stay employable. In my honest opinion, to be sick is NOT great but to be sick and be able to function IS.

When I say I'm tired means I really am and it's persistent 24/7 and 365 days a year. No matter how much I sleep or rest, I feel as tired when I awake as before going to bed.  I feel tired the moment I wake up. I feel drained by mid morning. I feel my energy drained and have lots of pain when stressed. I feel tired and achy when the air-condition is too cold or gets too warm. I'd get tired, breathless and weaker climbing up a flight of stairs or walk 3 blocks. I feel tired just by sitting or standing too long. I'd get tired doing nothing all day. I am always tired.  I do not complain because I'm tired of being tired and tired of complaining, to myself or my friends. It's embarrassing when someone may ask "But You Don't Look Sick"? or "Will You stop complaining"? I also don't want to be named as "complain queen".

I consider  such remarks as arrogance, disparaging and filled with envy.  These people do not think before they speak. They have no reservations for the sensitiveness of others.  I think they have a complex problem. So how do we define fatigue or tiredness? Dr. Karin Olson has created new definitions for tiredness, fatigue and exhaustion and argues that they represent various points on an energy continuum. The amount of energy a person has influences how easily he can adapt to stress that comes his way. Individuals who are tired still have a fair bit of energy, so although they may feel forgetful, and impatient, and experience gradual heaviness or weakness in muscles following work, this is often alleviated by rest. Fatigue, on the other hand, is characterized by difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, increased sensitivity to light and the limiting of social activities once viewed as important. Individuals with exhaustion report frank confusion that resembles delirium, emotional numbness, sudden loss of energy, difficulty both in staying awake and in sleeping and complete social withdrawal.

It has been written “But You Don’t Look Sick” by author Christine Miserandino.  Sometimes I would just take it as a compliment. I've been faking it for as long as I could and hope to win an award for best actress.  But what do I get in return?  Instead of receiving a medal, I received the most hurting words that pierced through my heart "is a sick man the greatest?"  just because I said I am sick yet have not complained about being tired. Everybody gets tired but unless there's a medical condition, will be alleviated with rest.  Do healthy people understand this fact? I act like I don’t care- but I do.

I am getting lonelier each day. I feel like I am living in a different world, with different issues, different priorities, and speaking a different language that I can only speak.  The only people who understand and know what pain and fatigue is are those who have a chronic condition.  Everyday, I go through a long list of obstructions before I even start the day. From the moment I open my eyes to the time I finish dinner, then to bed. 

What interest normal healthy people are things like shopping, food, movies, etc which I CERTAINLY enjoy too but simply do not have the energy or time, or know when I do not flare up. I have no choice, I have to live my life differently.  I have to think if tonight is another sleepless night.  Am I going to have trouble getting up out of bed? I need to remind myself again and again to take my medication. I worry if there's sufficient medication to last until my next doctor's visit. Can I make it through the day with less pain? I worry when will my energy be drained today? Do I need to stand or sit for long periods of time?  All these little things that healthy people do not put much thought into at all.

I hate people seeing me when I am sick and especially when I am looking sick. I really hate people seeing my head resting on the working desk, with a pile of paperwork and phone ringing non-stop.  I hate to look pale, with faded eyes and with splotchy skin and bad hair.  But I can’t make this big red blotchy rash go away. I will start scratching unknowingly when I'm stressed.  I just can't lift my head up high and walk with my chest out. I choose what to wear based on how bad I feel, my mood. I choose the place by the distance. Can somebody drive me there, will the people there want to see me and be happy or excited? Will I be able to leave without any financial issues or friendship ramifications? Will I be able to just leave them when I feel my energy is running low?

I used to love my life more, but has become less lately.

I hate thinking so much and having to blog, to share but my back hurts so much, vision blurry and can't straighten out my thoughts.  I hate to want to write but forget what to write.

I hate hospital appointments, and having people ask me questions that I don’t want to answer.

I hate to live like a healthy person when I can't do it well.


I hate to live like a sick person and try to "act" healthy at the same time.

I hate never feeling good enough, quick enough, pretty enough, or just “enough”.

I hate that I see the nurses more than my friends.

I hate that no matter how hard people try, (or don’t try) they will never know you are the only one who tells time by pills, energy and spoons.

I hate people that are inconsiderate, and make plans without thinking of walking or come by unannounced when a phone call can help you so much.

I hate people who complain, “I need a nap”, “I'm so tired", I have a headache”. They belittle what pain and sickness I may be feeling.

Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life. Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it.  I choose who should know the real me or who to share my soul with. I have few friends. Despite my disease, I do all I could to accomplish what I want and complete my projects. I don’t want a watered down life. I don’t want the simplest option given to me because somebody thinks I can’t handle any more. I want to decide.

I have good and bad days.  Sometimes I may be so fun and lovable to be with that you just can’t believe this girl is sick. Other days you will be standing right in front of me but searching for that fun girl you were with the other day.  I live in two worlds -  the healthy - where I "act", and the land of the sick. But it is too exhausting to live in two worlds at the same time. Everyday is like a double-edge sword - the private life vs the public life. Guess it's about time to wake up from this dream (The dream to get a trophy for best actress).  This is who I am.

I want to live in one world with just me. No more acting.  No more excuses for my choices, my feelings, my health. I am trying. I am me.