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!

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 dinet.org 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.

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!

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

"Brighter Days Will Come"

My mom was once dumped by a guy who, after breaking her heart, offered her the callous (and egotistical) consolation of "Brighter days will come." That line has survived as somewhat of a family joke during hard times, providing much-needed comic relief. Though, whenever it's said, deep down I kind of hope it's true.

I have wrestled with the fact that there are no "guarantees" in this life. Some people emerge from trials with stories of victory, and others continue to struggle and endure difficulty all their days. It's ok for me to ask God to deliver, but the fact is that he is God Almighty, sovereign over all creation (including me), and it may be his will for me to remain in difficult circumstances while I continue to trust Him.

As the new year of 2011 approaches, I'm torn between fear and hope. Will things get better, worse, stay the same? Are there any guarantees left in this life?

As I watched TV the other day, I heard a preacher refer to Ephesians 1:13-14:

In him you also, when you heard the word of truth, the gospel of your salvation, and believed in him, were sealed with the promised Holy Spirit, who is the guarantee of our inheritance until we acquire possession of it, to the praise of his glory.

What I love most about this verse is that it doesn't offer false hope. It's not that God "might" bless me or "perhaps" things will get better. No. God the Father who sits on the throne of Heaven has given me a very personal guarantee - proof of his love - a certain sign of what is to come. And this guarantee is not a vision that someone could misinterpret or a letter that someone could fake.

When the Israelites wandered in the wilderness, the most important part of their identity was having God dwell with them. Moses said that they could not move forward unless God went with them (Exodus 33:15). When I read this, I realize that I take for granted the awesome gift that God now sends his Spirit to dwell in each believer. I don't need to go to a temple to seek him in prayer. I don't have to find a priest who can go to God on my behalf. Because of Christ's sacrifice and the gift of the Holy Spirit, I can now fellowship freely and continually with holy God. I also receive an iron-clad guarantee from God that I will one day acquire a mind-blowing inheritance - inheritance that can never perish, spoil or fade. (1 Peter 1:4).

That passage of 1 Peter reminds me that though I may suffer here for a while, the testing of my genuine faith glorifies God and is of greater worth than gold. It's important to keep my eyes on the prize this new year. In 2011, there may be great triumphs or more dark valleys, but the Lord God is with me every second and has given me a guarantee - that by believing in his only Son as Savior, my marvelous inheritance is signed for, I've been sealed, and now I'm just waiting for delivery.

For those who accept God's offer of his Son, it is only a matter of time before the brightest days do indeed come.

Encouraged (and Giveaway Winner)

I was deeply touched to receive this comment from a reader last week. It was a difficult week for me physically as well as emotionally, due to illness in my family, and the power of that person's encouraging words brought tears to my eyes, renewed my strength, and made a big difference in my life.

Over the next several days, I received five other messages out of the blue that lifted me up as well. I could feel God's comfort through the loving words of others.

Today, remember that God uses us as his conduits to bring compassion and love to the lives of those who are hurting. Don't underestimate the power of a kind and healing word spoken at just the right time. You just may be God's messenger of hope for someone battling the darkness.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.
2 Corinthians 1:3-5

**Anonymous - Please contact me with your address at colorsofqavah (at) aol (dot) com so that I can send you the book "Perfect Trust." And thank you for your message of hope and encouragement!

Anxious Thoughts (and a Christmas Giveaway!)

During a particularly anxiety-ridden night earlier this week, I prayed for comfort in the lonely, dark hours of the early morning. I suddenly remembered a particular book called "Perfect Trust" that I heavily relied upon for comfort years ago, so I pulled it off my shelf. The little book is by Charles Swindoll, and though it is tiny (a bit larger than a 4x6 index card), the words in it are mighty, powerful scriptures combined with just the right encouragement for a hurting, troubled soul. I thought I would share a passage that particularly helped me:

You may be going through some of the hardest days of your life. You may be wondering Why? Why me? Why this trial?

James wrote to Christians who were enduring great persecution. They were probably asking those same questions. He answered them in this way. "Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him" (James 1:12). He was saying that when you persevere through a trial, God gives you a special measure of insight. You become the recipient of the favor of God as He gives to you, and those who suffer with you, something that would not be learned otherwise.

That word persevere is very important. It's an archaic word and we don't hear much about it in our day of bailing out and giving up. We don't hear much about hanging in there and persevering...about staying power! But there is more to it than merely enduring. It's one thing to stand grim-faced, tightfisted, and staring at God with anger, saying, "How DARE YOU! What right do You have?" or "Look at what I've done for you! And look at what I get in return!" That's one kind of perseverance. But there's another kind. The kind that stands with an open hand and open arms, that looks into the face of God and replies, "I submit myself to You. I'm trying hard to hear what You're saying. I wholly and completely admit my dependence. I've run out of answers. I'm waiting."

You may be going through a trial so overwhelming that it's borderline unbearable. You want to see the end of the tunnel. Which is only natural, because once we see that little speck of light, we feel we can make it through to the finish. But God's tunnels are often twisting, too complex and dark to see the light for many days. In such settings He says, "In that dark, twisting, seemingly endless period of time, trust me. Stop running scared! Stop fearing!"

This message reminded me that in the midst of chaos and uncertainty, God repeatedly asks me to trust Him and wait with hope and expectation. He assures that at the end of that long, dark wait, there will be great reward.

As a special Christmas gift, I will be giving away one copy of the powerful little book "Perfect Trust" by Charles Swindoll. Just leave a comment below, and I will use random.org to choose a winner on Friday December 17th.