Saturday, January 29, 2011

Living Better with Dysautonomia (Help #2: Yoga)

Help #2: Yoga

Since the extent of my yoga "experience" is comprised of 2 individual classes taken about 7 years ago, I wouldn't consider myself a yoga buff. However, last summer I read an article about how doing yoga can help recovered cancer patients sleep better. I figured that since I had trouble sleeping, fatigue, and needed to do some mild exercise anyway, it couldn't hurt to look for a yoga DVD.

I began my search by previewing yoga DVDs from the library. My criteria for a good video were as follows:

1) Most exercises had to be done either lying down or sitting.
2) I needed to feel like I'd stretched my entire body by the end.
3) It had to have one continuous routine, not disjointed clips of single positions.
4) I wanted it to be dynamic enough to feel like exercise but relaxing enough to relieve stress.
5) All of this had to occur in about 30 minutes or less. I can't spend the whole day doing yoga.

Despite many stress relief videos on the market, it was hard to find a DVD like this. I can't stand perched on one leg for 5 minutes with POTS. Blood pools in my legs, and the longer I stand still, the worse I feel. It was very important to find just the right routine for my energy level and medical needs.

Some videos were too fast, too aerobic, and I couldn't keep up.

Still others had me too relaxed, lying still for several minutes at a time. By the end, I felt like I'd just had an unsatisfactory nap on the floor.

So, it was with some Goldilocks-type excitement that I stumbled upon the DVD "Easy Yoga" by Gaiam with Suzanne Deason. Now, this is not the "perfect" DVD for POTS. It is, however, an easy and thorough stretching routine that refreshes me on days when I am lacking energy.

At first, I almost discarded it because of a series of standing stretches in the middle of the routine. However, I decided that I could manage with very slow transitions or even skipping certain postures.

The routine moves along at quite a fast clip initially, but with practice, I can now settle into most positions early enough to have plenty of time to stretch and transition to the next move.

The flow of the routine is very smooth. I never feel like I'm being jarred into a new position. The momentum builds very naturally from relaxed at the beginning to strength-building of the legs and then back to relaxing again.

I felt an increase in flexibility and muscle tone after doing the routine just 2-3 times a week for a couple weeks.

It requires a mat, a block, and a strap. I have a mat now but previously used a blanket. I skip using the block (you could use a book) and grabbed an old belt for a strap.

Breathing is key when doing this routine. At first, it was hard to coordinate the movements with the breath instructions, but once I practiced, the breathing felt natural and enhanced my stretching and stress-relief quite a bit.

It's important to note that I tried taking a hard line with myself when I first bought this DVD. I forced myself to do the routine on days when my fatigue was intense. Pushing my body too hard made my symptoms worse, so I have learned to pass on exercise if I'm having a particularly bad day. Respecting my physical limitations helps me function at my best.

Finally, I will end this review with my favorite part about the DVD: the last pose. After the rhythmic waves of stretching and breathing decrescendo to the last posture, I savor that peaceful place. You'll have to check this video out of the library or buy it to experience it for yourself!

Friday, January 28, 2011

Living Better with Dysautonomia (Help #1: Support)

In this and future posts, I plan to share things that have helped me on my journey to living better with POTS (a form of dysautonomia). These tips may not be right for everyone, but they are options that have worked for me. I hope that these posts will be an encouragement to those of you struggling with chronic illness. As this series progresses, please feel free to comment on what has helped you too. I am always looking for ways to improve my overall health and quality of life!

(Update: I originally started blogging this series in a random order, but I have reconsidered and decided to post in order of what has helped me the most. For those of you observant readers, you will notice that I have changed my number one help to be support because I think that is a critical need for those of us with ANS dysfunction.)

Help #1: Support

I will never forget those early days of diagnosis. One powerful word comes to mind when I think of that time: isolation.

I was confused, very sick, unable to work, and I couldn't get straight answers about treatments or my prognosis. Tons of questions swirled in my head. Would I ever stand again without being dizzy? Would I ever drive? Could this be permanent? What medications work best? Am I on the right doses? Will I have to give up my career?

Additionally, I felt life slipping through my fingers, but none of my friends could truly empathize. Their lives went on as normal. They hadn't even heard of my condition before.

As a researcher, my first inclination was to do a Google search about POTS. I landed at and found home. At DINET, not only could I find valuable information about my illness, but I found an active forum to support me through my emotional struggles, questions, and grief. The devastation of being disabled at age 23 was understood by peers who were enduring the same thing. Seasoned veterans, already adjusted to life with POTS, offered wisdom and hope to us newbies. Every step of the way, I had a reliable place to go for comfort and advice.

If you suffer from ANS dysfunction or think you might suffer from it, DINET is the place to find support. I have made some dear friends through this site. During a time of life when I felt no one could possibly relate to what I was going through, these friends could. Even now, as I endure multiple trials on top of illness, I'm continually encouraged by them, for they understand what it feels like to hurt deeply, to not be understood, and to struggle for years with no end in sight.

DINET is a place that provides hope, education, and compassion. These are invaluable treasures to a person suffering with dysautonomia.

Tuesday, January 18, 2011

The Now and The Not Yet

When I read this verse this morning, it filled me with hope for the future.

Beloved, we are God's children now, and what we will be has not yet appeared; but we know that when he appears we shall be like him, because we shall see him as he is.
1 John 3:2

The ESV Study Bible note on this verse states:
What we will be means having glorified bodies that will never be sick or grow old or die, and being completely without sin. No one like that has yet appeared on earth (except Christ himself after his resurrection).

I am pressing on today because as God's child, the best is yet to come!

Tuesday, January 11, 2011

Breaking the Cycle

Treating dysautonomia is often a game of trial and error. The autonomic nervous system is dynamic and complex, and the reasons for its dysfunction can be varied and not easily pinpointed. One person might have a genetic predisposition. Another person's case might be due to a trauma, surgery, child birth, Lyme disease, or a viral component.

The origin of my illness was likely due to exposure to toxic mold and then subsequent pesticide exposure. Though I could limp along and appear to function for a while, it took years for my symptoms to manifest in a way that completely incapacitated me. A flu virus pushed my already weak body over the edge, and after collapsing, I could no longer go on with my daily life.

Treating my dysautonomia has been difficult. Mostly, I am told to live life within my limitations, take in plenty of salt and fluids to maintain blood pressure, and to perform mild exercise as I am able. These treatments have only taken me so far, and so I sought the opinion of a specialist in chronic illness last fall.

This physician urged me to try a new diet free of sugar and carbohydrates, based on her diagnosis of "leaky gut syndrome." In her opinion, my past mold and chemical exposures caused damage to my intestines. The cells lining the intestine are normally very tightly knit together so that only nutrients and vitamins can be absorbed into the bloodstream. However, with increased intestinal permeability, the gaps between these cells widen, allowing larger particles, toxins, and bacteria into the body. As she explained, this creates a cycle of inflammation and inappropriate immune response that manifests as systemic disease, fatigue, stomach problems, aching muscles, and even autonomic nervous system dysfunction.

Trying to break this inflammatory cycle is difficult and requires me to make positive choices almost hour by hour about what I will put into my body. If I put in the wrong foods, my gut won't be able to handle the onslaught, ultimately leading to more inflammation and increased symptoms.

When I woke up from a recurring dream last night, the fight to keep my thoughts from dwelling on the dream reminded me of my struggle with leaky gut syndrome. Every time I tried to quit thinking about the dream, it came back again. I knew from past experience that if I allowed these thoughts to permeate into my mind that I would have a full-blown assault on my emotions, which would lead to "spiritual inflammation" and losing my sense of peace.

It occurred to me that areas of weakness in my thought life create a "leaky mind."

For example, I am often tempted to compare myself to others. I'll be consuming a diet of Facebook photos when suddenly one will trigger an envious response. I'll feel like less of a person compared to what that person has. I'm also tempted in other ways - to fear, to not trust God, to covet, to dwell on the past, to feel guilt and condemnation, to be discontent with what God has given me - just to name a few. All these areas of weakness are like gaps in my spiritual defense. Negative thoughts leak in through these weaknesses, and before I know it, more unpleasant thoughts lead to negative emotions, which lead to a full-blown spiritual attack. Then I feel defeated, like I can't even lift my head. It takes a lot of encouragement to come back from a blow like that, so the best way to head it off is to break the cycle at the beginning. This starts with diet.

Just like my food diet, I have to be disciplined to make good choices every minute and every hour about what I "consume" mentally. I am responsible for what my eyes take in, for what I hear, for what I choose to dwell on, and if I repeatedly choose healthy thoughts, I lessen the chance of a tempting idea taking me down into an all-out defeat.

The similarities of my physical and spiritual condition are fascinating to me. We as people are consuming all the time in order to exist. We must eat food, and we must consume ideas, philosophies, and thoughts that bombard us on a daily basis. Our minds can only filter out so many negative things until we are overloaded. I have realized during this time of trial that my mind is extra-sensitive to negative input. It's my job to repeatedly reject those unbiblical thoughts before they leak in and reignite the cycle of spiritual inflammation.

By repeatedly rejecting wrong thoughts and instead pursuing a diet of right thoughts, I've found that I can live at peace spiritually, even in the midst of temptation and trial.

Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that your brothers throughout the world are undergoing the same kind of sufferings.
1 Peter 5:8-9

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Philippians 4:8