Friday, February 22, 2008

"Let Your Day Begin"

I have a condition called "dysautonomia."

It's called that because it is dysfunction of the autonomic nervous system. If you're really curious about it, you can read more here:

To sum it up, the autonomic nervous system "automatically" controls things in your body that don't require thought or conscious control on your part. So my body is a little rebellious and things like blood pressure, heart rate, digestion, temperature regulation, and urination, can all sort of go haywire.

I'm one of the lucky ones because over several years with medication, rest, diet, and proper treatment, I'm slowly getting better. No one really knows for sure how my nervous system was damaged, whether it was mono when I was a teen, or toxic mold and chemical exposures my last year of high school and first year of college, or a virus. What is certain is that my onset of episodic symptoms was gradual, all through college, and then suddenly, my symptoms became disabling in graduate school.

I deal with the following symptoms:

Tachycardia (Grubb, 2000)
Lightheadedness (Grubb, 2000)
Dizziness (Grubb, 2000)
Palpitations (Grubb, 2000)
Exercise intolerance (Grubb, 2000)
Flushing (Grubb, 2000)
Fatigue (Grubb, 2000) (which can be disabling)
Polyuria (Jacob & Biaggioni, 1999) (excessive urination)
Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)
Intolerance to heat (Grubb & Karas, 1999)
Sleep disorders (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
Cold hands (Low et al.) (and often feet & nose)
Hypovolemia (Low et al.) (low blood volume)
Noise sensitivity (Stewart, 2001)
Light Sensitivity (Stewart, 2001)
Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)
Easily over-stimulated
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)
Irregular menstrual cycles
Muscle aches and/or joint pains
Polydipsia (excessive thirst)
Pupil abnormalities
Loss of appetite
Swollen nodules/lymph nodes
Sore throat
Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997)

Chest discomfort and/or pain (Grubb, 2000)
Bloating after meals (Grubb et al., 1997)
Diarrhea (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
Feeling cold all over (Grubb & Karas, 1999)
Numbness or tingling sensations (Low et al.)
Generalized weakness (Low et al.)
Low back pain (Mathias, 2000)
Nausea (Robertson, 2000)
Disequilibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)
Weight loss or gain

During an "episode":
Clamminess (Grubb, 2000)
Fainting or near fainting (Grubb, 2000)
Anxiety (Grubb, 2000)
Tremulousness (Lowe et al. 1995)
Tunnel vision (Low et al.)
Chills (Low et al.)
Hyperventilation (Low et al.)
Excessive sweating (Robertson, 2000)
Feeling detached from surroundings
Blurred Vision (Grubb, 2000)

For me, episodes used to occur a lot more often than they do now, but as you can see, these symptoms can be quite disabling. The main issue being that my body doesn't adjust well to upright posture. To put it simply, I'm "gravity intolerant."

Sitting upright and standing are my biggest challenges, and when I'm pushing myself to be upright for too long, I pay with fatigue, muscle aches, and sore throat. If I go beyond that, I typically push myself into an "episode" of acute symptoms. Medications, stress, excessive stimulation, and hormonal shifts can all trigger episodes.

A few days ago, I posted that in graduate school I had a case of the flu than lingered on for months. I wasn't keeping up with my job or my schooling, and I was sleeping as much as I could, with no relief. I didn't know better, and so I didn't slow down. I passed out at church one Sunday, and I never bounced back after that. I tried to continue working, but the room was always spinning around me, and I couldn't focus. All I could think about was getting back into bed. This lasted for weeks, with a lot of sick days, before I was finally sent to a specialist.

The specialist put me through a tilt table test, which tested my body's response to gravity by strapping me to a bed and then slowly increasing the angle of the bed until it was holding me in a standing position. I was not allowed to flex my leg muscles to compensate for my inappropriate circulation. In under 10 minutes, my heart rate escalated to almost 150 beats per minute, and my diastolic blood pressure was continuously dropping. Just before I lost consciousness, they lowered the table, and the doctor informed me that I had POTS (postural orthostatic tachycardia syndrome).

POTS is a form of dysautonomia that refers specifically to the increased heart rate I experienced when I stood. In essence, it was like I was having a "fight or flight" reaction going on in my body whenever I was up. No wonder I was so tired! Quality of life for someone with POTS has been compared to those with congestive heart failure. However, at the time, I didn't understand my limitations and thought this sudden problem could just be fixed with some medication. After all, I had been able to limp along before this.

My condition simply deteriorated. I took a month off waiting to get better, and when I didn't, I went back to work anyway, trying to convince myself I was better by returning to my daily routine. Soon after, I was sitting at work with my feet up, and passed out in the middle of a meeting. Luckily, I worked in a hospital, and was at a meeting on the cardiac floor, so God couldn't have taken better care of me. But due to the timing of the meeting, it was obvious I could very easily have been on the road driving home when this incident occurred. My eyes were finally opened to the risk I was taking with my daily 50-minute commutes as well as the severity of my limitations.

Once I discontinued going in to work, the doctor started me in cardiac rehab to protect from deconditioning. I also tried new medications and dosages. This period of time was the worst of my illness. I was practically bed-bound, except for my rehab sessions, to which I had to be driven, and at times, wheeled out in a wheelchair. I could not sit up at the dinner table long enough to eat a meal, and had to bathe quickly in cool water so I wouldn't faint in the shower. I was frantic about finishing my master's degree and losing my place in my program. I only got sicker. I had major digestive problems during that time which required ultrasound, x-ray, radioactive tracers, and my favorite, the CT scan-- which sent me to the ER because of my surprise anaphylactic response to the contrast dye. My sleeping problems also heightened, and I lost a lot of weight, surviving primarily on bagels and noodles. All life consisted of was rehab, resting, and wonderful visits from my faithful boyfriend.

I somehow finished my thesis from home and conducted my final defense with a Boost nutritional drink in my hand, as I gave my talk from a wheelchair. That day of graduation from my program was like crawling over the finish line of a marathon. Tooth and nail, I fought for that degree, and when it was finally over, I was exhausted.

It was that particular day, when my family and I were at my defense, that the spark of our current issues went from a small spark into a full bonfire blaze. At least God introduced my trials one at a time... :)
Today was a good symptom day for me. I was doing my exercises while listening to the Tree63 "The Answer to the Question," and I heard this song that expressed my heart's cry. The scripture at the end was in the liner notes after the lyrics.

Let your Day Begin

Lord are you still coming?
This world is all in shame
Everything is broken
But you remain...

Have mercy on me, Jesus
I can't take one more step
The lights go out all around me

I want to see you face
I want to hear you voice
I want to lay my burden down
I want to run to you
Forever dance with you
I long for night to end
Lord let your day begin

The sons of men are hiding
Pretending to be free
They're yearning to escape you
For "liberty"...

But all I want, Lord Jesus
Only you can give
When the light goes out all around me

I want to see your face
I want to hear your voice
I want to lay my burden down
I want to run to you
Forever dance with you
I long for night to end
Lord let your day begin.

Psalm 74:22-23
"Rise up, O God, and defend your cause;
remember how fools mock you all day long.
Do not ignore the clamor of your adversaries,
the uproar of your enemies, which rises continually."

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