Fatigue

Le Scaphandre et Le papillon (The Diving Bell and the Butterfly)*

About five years ago, I went to see the "Diving Bell and the Butterfly" with my husband, who was my boyfriend at the time. It was a true biographical film depicting the life of a French-ELLE magazine editor, who suffered a massive stroke at the age of 43.  The stroke left him in a "locked-in syndrome" which meant he was physically paralyzed but mentally normal.  He wrote his entire memoir by blinking his left eyelid when shown the letter he wanted to communicate.

At the time I saw the movie, I thought how sad the story seemed.  Here was a man who took his life by the storm.  He had such a full life.  When he became paralyzed, his whole life, along with his body, betrayed him.  His lover, his job, his friends, etc.  As sad as it was, the story seemed so far from my reality that I tucked it away in my mind as just another great storytelling of an unfortunate life.

My reality, of course, has since changed.

While I relate to the the author on many levels now, the movie really stands out in my mind because of his description of what the locked-in syndrome felt like.  Trapped in a paralyzed body but with a clear mind, he felt like he was descending darker into the ocean, while trapped in a diving bell. This is how I feel when I experience lupus fatigue.

Fatigue, that is debilitating fatigue, is one of the most common symptons of lupus.  The statement that "I am so tired" does not even come close to the kind of fatigue I experience.  It is really difficult to get this through to someone who has never experienced it.  Often the response I hear is "I'm so tired too!"  If only one knew.

When I was first diagnosed with lupus and read that fatigue is one of the common symptons of lupus, I did not take it seriously.  I thought I knew fatigue.  Afterall, in my profession and throughout my academic career, it was not uncommon for me to pull all nighters or near all nighters for weeks at a time.  I have known exhaustion.  Or so I thought.

I did not even recognize that the sympton I was experiencing was fatigue.  For my body to be so paralyzed that I could not even open my mouth to ask for water or to lift my head to drink the water that was left at by bedside, I could not understand what I was feeling.  I did not understand it was fatigue.  I could not comprehend why in my mind, I was going over motions that I could not pysically enact.  Being so thirsty, I drank the water next to my bed a dozen times in my head, only to lay motionless with my throat perched and with tears rolling down my eyes.  I felt so trapped in a useless body.  I felt paralyzed.  I felt, as the author did, trapped in a diving bell. 

I wish I had never learned what the author meant by his anaolgy.

____________________________________________________________________________________
*"Le Scaphandre et Le Paillpillon" by Jean Dominique Bauby

The "Big Flare" of 2011

From Head to Toe

In September of 2011, my flares resulted in multiple hospitalization.  Because my way of dealing with this disease was to ignore it, lupus decided to launch a full assault on my body.  Save for my kidney, I had inflammation everywhere and the pain did not stop after I was released from the hospital.
Here is the list of the attacks:

- attack of the central nervous system
- attack of the heart
- attack of the lung
- attack of the digestive system
- attack of the reproductive system
- attack of the skin, joints and muscle

Here is the list of the symptoms resulting from these lupus attacks, as well as from the medications used to fight them off:

- fever
- sweating
- chills
- nausea
- dizziness
- chest pain
- difficulty breathing
- fatigue
- muscle pain
- back pain
- joint pain
- swollen joints
- bulging eyes
- dry eyes
- blurry vision
- crusty eye lids
- sensitivity to light
- sensitivity to sound
- ringing of the ears
- hair loss
- bent and brittle nails
- no menstruation
- stomach cramps
- heartburn
- gas
- numbness below the waist
- muscle spasms
- skin rashes
- dry skin
- bruises
- cuts
- stretch marks
- nose ulcer
- mouth ulcer
- no taste
- sensitivity to spices
- sensitivity to hot or cold food
- swollen taste buds
- sensitive teeth
- sensitive gums
- sensitive walls of mouth
- thrush
- weight gain
- weight loss
- weak legs
- frequent urination
- diarrhea
- constipation
- loss of bladder control
- indigestion
- headaches
- swollen glands

- insomnia

- delirium

- nosebleeds

- vomiting

- dry coughs

- cognitive dysfunction

I experienced all of these symptoms, all at once, in great intensity for about 8 straight months.

Well, the attack worked and lupus now has my full attention.

Invisible

Lupus is an invisible disease.  

Aside from possible skin rashes, bruises, hair and weight loss, all the symptoms of Lupus are invisible.  During my worst days, it really puzzled me how my friends and relatives would ask how I was doing.  After all, I wondered, could they not see that I am NOT ok.  Why would they even ask?

But the thing is, looking back at my pictures, I would not be able to tell that I was really sick just by my outside appearance.  Aside from subtle changes (glazed eyes, pale lips, forced smile, etc.), one cannot tell what is going on inside.  In picture 1, I was Lupus free.  Comparing this to pictures 2 and 3, there isn't a huge difference.  

In picture 2, I lost so much weight, especially in my legs, that walking was becoming really difficult. The night before this picture was taken, I was up all night because of the pain.  But in this picture, I look like a thin, proud mother, enjoying her Fourth of July on the beach.

In picture 3, I was in so much pain that it's too numerous to name all the symptoms here.  What you cannot tell from the picture is that without assistance, I was barely able to walk or get up from the couch that this picture was taken.  I was still pretty delirious and breathing was really difficult.  I had gained lots of weight because of prednisone.  I had cut my hair short because I lost most of it to chemo, prednisone and Lupus.  I was covered up to hide the rashes, bruises and random cuts in my body. But in this picture, I look like a chubby mother, enjoying a nice day with my family.

Picture 1: Six months before my first flare and diagnosis of Lupus.

Picture 2: During a Lupus flare

Picture 3: During the "Big Flare"

I guess though, what does it mean to look sick?

And why does it matter anyways?  Who cares whether you look sick or not.  Isn't it better not to look sick?

The difficulties from living with a raging disease that is completely invisible comes from many fronts -- from those close to you, who do not understand how sick you are and to the waiters, who do not understand why you cannot take the stairs to the second floor bathroom.  More on these difficulties later.

1 AM Wake Up

At 1 AM last night, Lupus woke me up.

I used to be such a deep sleeper that nothing used to wake me up but now, sleep is an elusive thing.  Because of the pain, it is hard to fall asleep and to stay asleep.  Last night was especially bad.

For about 4 hours, I was too sick to do anything.  There was vomiting, coughing, and lots of crying.  My poor husband did not get any sleep trying to do everything he can to ease the pain.  There isn't that much to do in times like these.  Nothing really helps.

This is what it feels like. . .  imagine if a few guys beat you up for a few hours, kicking and punching you while you lie helpless on the floor.  Then with bruised muscles and broken bones, they chain you up and throw you in the ocean.  Here, you think, mercifully, you must now die but instead, they duck tape a straw in your mouth, just enough for you to breath but not well or comfortably.  You are nauseous and dizzy. But your hands are chained, so you cannot do anything.  You cannot let more air in or cut the air altogether.  So you suffer.  For hours.

Then Lupus lets you go for awhile.

The breathing gets a little easier, the painkillers kick in, and I fall asleep for a few hours at the comforting hands of my husband and his whispers promising me a better day.

Monsoon of Pain

Summer of my junior year in college, I studied abroad to South Korea.   Here, I experienced what rain during monsoon season meant.  When it rained in New York, it ebbed and flowed during the day and week.  But that summer in Korea, when it rained, it rained hard and continuously, for days.  There was no relief from the pounding rain.  Similarly, the pain I experienced during the last eight months was complete, intense, and continuous.  There was absolutely no break from the pain.

Nothing prepared me for how this would be like day to day.  The attack was complete in the sense that Lupus attacked every part of my body from head to toe, save my earlobes and my kidney.  Internally, it attacked my brain, heart, lungs, digestive system, reproductive system, nervous system, bones and muscles.  Outwardly, it attacked my skin, my eyes, mouth, teeth, nose, ears and nails.  The pain that came from these attacks was indescribable.  It was hard to isolate the pain as well since I was being attacked in so many places all at once.  It was like being beat up by a mob and not being able to tell who was attacking you and where.  The pain was so intense that tears would well up and I would cry for hours.  One of these symptoms, for example, muscle pain would be enough to make a person miserable.  But to have everything go wrong, all at the same time, was just too much.

And the words to describe these symptoms do not do it justice.  "Muscle pain" is not like the pain one normally experiences when they have sore muscles.  This is burning pain.  It is as if a roller is continuously going through your body flattening out burning coals after your have ran about 100 miles.  This was just one of about hundred things that was wrong with my body.  I experienced the kind of pain that should only last about a few hours, maybe a day or two, for eight continuous months.  That is about 240 days or 5,760 hours, give or take.

I did not think it was possible for someone to be this sick for this long.

I would fantasize about death as a means of relief since nothing else, not strong painkillers, chemo, steroids or even sleep, would give me any sort of respite.  I have finally broke out of being this ill all the time, and am now experiencing four stages of pain - very ill, ill, very sick and sick.  It's not much but when I feel "just sick", I feel some relief.  I am hoping to add "not sick" and "well" to these stages at some point.  Hopefully soon.  I could use the rainbow that comes after all the rain.

Heart Biopsy and Catheterization

Lupus attacked my heart last summer.*  I was suffering from chest pain, fluttering heart beat, and shortness of breath.  A chest X-ray showed fluid in the lining of my heart and my steroid dosage was increased.  Unfortunately, this was the beginning of what was to be a major flare, resulting in hospitalization and chemotherapy for this, and other symptoms.  After nearly a year, I was still suffering from symptoms related my heart and my rheumy referred me to a cardiologist, Dr. S, who suspected that I might have myocarditis and other heart issues.  To be sure, she recommended that I have a heart biopsy and catheterization.  I was scared to undergo an invasive procedure and was unsure if my body could withstand it.  I insisted on more blood tests and more echocardiogram, but my rheumy put it to me straight  explaining that I needed to do this, because if I do have these heart problems and we don't treat it, I can die in 2-4 years.  OK.  I scheduled it right away.

Leading up to my appointment with the catheterization lab, I was anxious and stressed.  I have never had this done before and the fear of the unknown was great.  When I made the appointment, I was reassured that everything would be explained to me before I started.  This did not happen. I am always amazed at how much self-educating a patient has to do.

I went in for the procedure last Friday.  My appointment was set for 11:45 AM.  I was told not to have anything to eat or drink starting at 7 AM.  I got up at 6 AM, had a little snack and relied on mint/ice cubes for the rest of the time.  Once I got there, I was kept waiting for about an hour.  Since I am still going through a major flare and still very sick, I asked if I had a bed to lie down on while I waited.  At that point, they were ready to admit me to the prep room.  I don't know if other cities are like this but NYC hospitals are like NYC restaurants, you have to keep asking the Maitre D' if your table is ready.

Jim dropped me off in the prep room where a number of nurses took over.  I changed into my hospital gown and laid down.  The nurses put me on an IV, strapped on the blood pressure monitor, and the heart monitor.  One nurse came over to shave me in the groin area where they were going to insert the tubes -- no need -- Lupus/chemo and steroids all ensured that such measure is not necessary, loss of hair was not limited to my head.

I waited another hour or so.  At this point, I was crying from the nausea, dizziness and general Lupus pains.  It was past 2 PM and still no news of my going in for the procedure.  Finally, a nurse came in to let me know that they were ready for me.  She explained that I will be lying flat during the procedure and for about 4 hours after that for recovery.  I was devastated since it is difficult for me to lie on my back due to the chest pain, nausea, dizziness and headache.  I asked if I can chew on mint or gum or ice or ANYTHING during this time.  As is the case with hospitals, the answer was "absolutely not, we're afraid of asphyxiation."  I told her it sounded like legal talk and I would sign something if it helps.  The nurse snapped and said, "it's not legal talk, it's nurse talk."  Now, I know they have their concerns but hospital protocols generally are strict, at the expense of the patient.  It's also ironclad.

I tried explaining that I have Lupus, that this is something that was not explained to me before and that I just needed mint of something to get through this without feeling the nausea/dizziness.  I was exasperated.  The nurse, also exasperated, stated that I do not have to go through the procedure if I don't want to.  She said, it was my choice.  This statement completely broke me and I was left crying even more and saying stuff like -- well, it's not my choice, I don't want to be here, I am too sick for this, but the doctor said I could die, so I am here -- and as I was saying these things, I realized, I had no choice and I had to go through with it.  Time was of the essence and I could not put this off.  I was not going to feel better in a few weeks.  Defeated, I decided to go through with it.

I cried the entire time.  They wheeled me into the catheterization lab, where I laid naked on the bed/table.  My groin area was cleansed with alcohol and a monitor was placed on my chest and ankle.  I was awake the entire time and had to listen to everyone's discussions.  This was very reminiscent of when I had to have a C-Section about a year ago.  The doctors talked to each other about what was happening ("ok, the tubes are being inserted") and then talked to each other about other things ("hey, can we get some music in here").  You realize, while it's a devastating day for you, it's just another day in the office for them.

Incisions were made in my groin to access an artery for the catheters.  Because they numbed the area, I did not feel too much pain.  Pressure was added at times and my heart was pumped faster than usual.  It was the closest I came to feeling what a heart attack must be like.  The procedure lasted about an hour.  The pain really came afterwards when I was taken to the recovery room.  The nurse took both of the catheters out and applied pressure to the area.  I had to lie still for 4 hours after that.  The area was incredibly sore, the incision areas burned and I was in general Lupus pain, including nausea, body aches, difficult breathing, etc.

I was finally released at 8pm.  I stayed up most of the night from the Lupus pains, aggravated even more from the procedure.  This is the problem with Lupus.  My body cannot handle the stressors that a normal body might be able to.  The bruising from my C-Section lasted almost a year.  I wonder how long this will last?  At least no infection so far and fingers crossed for the results.  Sigh.

Picture:  Bruising from the heart catheterization and biopsy

* Heart disease is a major complication of Lupus and is a leading cause of death among Lupies.  Non-invasive blood tests, chest X-rays, an electrocardiogram (EKG), or an echocardiogram may be used to find out if you have a heart condition caused by Lupus. For more information on how Lupus attacks the heart, please refer to the Lupus Foundation of America website. 

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2301&zoneid=526

The Diagnosis

"It's not like you are going to die. . . ."

I remember thinking I needed to exercise.  I was on a ski trip in Utah and I could not keep up.  I was short of breath, my chest was hurting and my body was aching after one run on the slopes.  I called it quits, had some chow and went to bed thinking I must just be tired from working long hours, recovering from the holidays and flying.  The next day, I woke up with incredible chest/back pains.  I told my husband Jim to press a huge book on my back while I layed faced down to try relieve some of chest pain.  I also tried getting a massage.  None of these remedies helped, but again, I thought it was just a regular sort of body pain.  Nothing serious. 


Then I woke up in the middle of the night crying.  Actually, I woke up wailing.  I did not know what to do with myself because I was in so much pain.  As soon as the sun rose, my husband and I took a cab to the nearest hospital.  They ran a variety tests all morning.  At the end of it all, a doctor came in, and proudly announced that they figured it out -- I had pneumonia.  What I found amazing about this is that they delivered this news like they won the lotto (for figuring out the cause) and as if I just had a common cold (no explanation whatsoever as to what pneumonia is).  This was the beginning of a long line of my interaction with doctors, where devastating news is nonchalantly delivered to me as if they were delivering news of the day's weather.  To make the long story short, I stayed out the rest of my vacation in Utah, then flew home to NYC, went back to work, and in a short while, was hospitalized.  I had my lungs punctured and fluids drained.  I was in debilitating bed rest for about two months.  My pneumonia was pneumonia pleurisy and possibly a flare. 


When I returned to work, I started to have muscle and joint aches.  As if I didn't learn my lesson the first time, I believed it was because I was out of shape again.  I thought the prolonged bed rest led me to these weird joint and muscle aches.  I was also unreasonably fatigued all the time and had to steals little naps just to get through the day, but again, I reasoned that the pneumonia must have taken a toll on my body.  It wasn't until I could no longer sit up on my own, or lift my arms to get dressed, that I finally went to see my doctor.   My primary physician, Dr. F, ran some blood tests and suspected that I might have Lupus or Sjogren.  He referred me to a rheumatologist, Dr. G, who confirmed that I had "mild Lupus". 


I was more confused than devastated.  Lupus? What is that?


So I asked my rheumy Dr. G., who advised that I do not scare myself with websites and support groups and instead, referred me to an old pamphlet from the 70s.  He stated that nothing really has changed since the pamphlet was published.  He then sent me home with a prescription for a low dose of prednisone.


I had lots of questions after reading the short pamphlet.  


So I then turned to Dr. F with my inquiries, to which he impatiently replied -- "It's not like you are going to die from Lupus!"


I took odd comfort in these unsympathetic comments.  After all, these are doctors and they must know what they are talking about, right?  Besides, I thought, my life is too busy to make room for Lupus.  If it's not going to kill me, what's the big deal?


This was the wrong start to being  a Lupie.  Since the diagnosis, the mismanagement of my disease led me to come face to face with death and it was an ugly fight.  I have survived but not without a heavy price.*  


*If anyone reading this has been newly diagnosed with Lupus, I urge you to become an educated Lupie.  Please reach out to your local support group, the Lupus Foundation of America or even to me.  Avoid websites until you have read some books on Lupus and living with Lupus.