Sunday, May 29, 2011

Out of Control (in The Hands of The One in Control)

"No one can tell me what I can and can't eat!"

Thus says my grandma with dementia.

It's amazing to me how dementia (much like Alzheimer's) removes all inhibitions and reveals the ugly threads that weave through human nature.

I am no exception to this nature.

When I was a kid, I was considered "strong-willed." My mom read a book about it. This trait was most readily observed by my famous toddler expression of "ME do it" anytime I was confronted with a task on which I received even the faintest suggestion of help. (Eventually I graduated to: "Let me do it on my own.")

I was also an expert at testing my boundaries. When I was a small child, I was informed that our family was going to leave my grandparents' house one evening. Not wanting to go, I refused to budge. I was then given the option of walking out on my own or being carried against my will, to which I stubbornly responded with my own defiant choice: "I'll crawl out."

Yes, God has had his hands full breaking my will to be in control. I have repeatedly been convicted of my desire to drive the boat, so to speak.

It's not hard to see why trusting God is difficult for me. My objective is to avoid discomfort, discipline, and pain. However, God frequently accomplishes his important purposes through these things. How do I respond?

My grandma's response is to lash out in the same way I used to as a child. In her state of being completely dependent on my mom and me for everything because of her failing health and mind, she tries to regain some form of control. In doing so, she defiantly asserts her will in areas that make everyone's life more difficult.

I learn a lot about my childish ways with God when I see my grandma act like that. By refusing to eat simply because she doesn't like being taken to the toilet (or being washed, or given food), she hurts herself the most.

Similarly, when I refuse to pray to God simply because I don't like the circumstances he's put me in, I, also, am hurting myself the most. I need prayer as a protection, as an outlet, as a guide, and for peace during times when life is beyond my influence. It's easy to see lack of prayer as making a point, but God does not respond to my defiant silences. He simply waits for me to come back because I'm hungry for him and nothing on this earth will fully satisfy that hunger.

Even when trials and illness make you feel completely powerless, remember that God is not the enemy. He is the one who will lead us to repentance and peace that passes all understanding, if we would just be still and trust in him.

For the Lamb at the center of the throne
will be their shepherd;
‘he will lead them to springs of living water.’
‘And God will wipe away every tear from their eyes.'”
Revelation 7:17

Thursday, May 19, 2011


This song reminded me today that my suffering has a purpose far beyond what I can see. I've never longed for Jesus like I do in times of suffering.

Blessings by Laura Story

We pray for blessings; we pray for peace,
Comfort for family, protection while we sleep.
We pray for healing, for prosperity.
We pray for your mighty hand to ease our suffering.

All the while, you hear each spoken need.
Yet love is way too much to give us lesser things.

Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you're near?

What if trials of this life, are your mercies in disguise?

We pray for wisdom, your voice to hear.
We cry in anger when we cannot feel you near.
We doubt your goodness; we doubt your love,
As if every promise from your word is not enough.

All the while, you hear each desperate plea.
And long that we'd have faith to believe.

Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you're near?

What if trials of this life are your mercies in disguise?

When friends betray us, when darkness seems to win,
We know the pain reminds this heart that this is not, this is not our home.
It's not our home.

Cause what if your blessings come through raindrops?
What if your healing comes through tears?
What if a thousand sleepless nights are what it takes to know you're near?

What if my greatest disappointments, or the aching of this life,
Is the revealing of a greater thirst this world can't satisfy?

And what if trials of this life, the rain, the storms, the hardest nights,
Are your mercies in disguise?

Thursday, May 12, 2011

Living Better with Dysautonomia (Help #7: The E-word)

Help #7: Exercise

I have been a neglectful blogger lately.
This is in part due to the mild apprehension I felt about writing this exercise post. To start with, POTS/dysautonomia patients are by their very nature exercise intolerant. Exercise intolerance is a crippling symptom of dysautonomia that can make staying in shape about as hard as if you had heart failure. If you suffer from POTS, strenuous exercise will in all likelihood make you feel worse, much, much worse.

That's an encouraging start to this "help" isn't it?

I have a great deal of emotion invested in this topic because I am one of many patients diagnosed with disabling POTS in spite of struggling to exercise regularly. Before my symptoms disabled me, I worked in a lab, went to school, and belonged to a gym. I pushed 3 miles on the treadmill multiple times per week, used all the weight machines (recording my progress on an official-looking chart), and routinely avoided a slimy middle-aged guy who made unwelcome comments and wore unnecessary spandex shorts. I had a gym lock and a duffle bag. In terms of fitness, I was doing everything "right."

But in spite of that, so much went wrong.

About 8 months before I became disabled, I was walking around the track and suddenly felt sick. I decided to go home and barely got in the door before my nausea, dizziness, and cramping got the best of me. A hot shower only made things worse, and I slowly faded out of consciousness while lying in bed. In the ambulance on the way to the ER, my heart rhythm was rapid with excessive PVCs. After receiving a substantial dose of IV saline, I revived, and I was told to take it easy.

This episode is evidence that even those mildly affected by POTS symptoms can have serious episodes triggered by exercise if the proper precautions are not taken. In my case, I was clearly dehydrated. I had not eaten enough before going to the gym. The timing of my menstrual cycle was against me, and I had not gotten enough sleep the night before. For a healthy person, this would not be a big deal, but with underlying POTS, these factors put me in a very vulnerable position. It's because of these important factors that I placed "exercise" as number seven in my list of helps. If diet, sleep, hydration, and other precautions such as pacing are not taken into consideration first, exercise can end in disaster for a POTS patient.

The following exercise tips I have learned by trial and error over the last 6 years. I offer them here as a source of encouragement and in hopes that you won't have to make the same mistakes I did.

Tip 1: Some types of exercises are better for dysautonomia than others.
Simple walking is my preferred type of exercise. However, I have friends who enjoy swimming because of the compressive effect of water on the body's circulation. Recumbent bike riding can be beneficial because of the ability to recline. (Upright biking exacerbated my symptoms.) Additionally, Pilates-type workouts that are done mainly while lying down can allow for greater blood flow to the head. One good DVD for supine Pilates is by Denise Austin.

Tip 2: Some types of exercise are better for YOU than others.
If you don't like bike riding, or if it makes you feel awful, then you will subconsciously avoid it. If you have obstacles to getting to the pool, then you won't go often. If you live in a rainy or cold climate, then walking outside won't be made into a habit. It's best to pick an exercise that you can do immediately if you feel up to it. I am lucky enough to have a treadmill, but there was a time when I didn't have one. I had to get creative, so I walked in a loop around a small apartment. Though simplistic, I was able to do this much more regularly than any exercise which would require me to leave home.

Tip 3: Plan a regimen that is realistic for your current abilities.
When I started a cardiac rehab program shortly after my diagnosis, I was on a beta blocker which lowered my already low blood pressure even further. I was then put on a treadmill and told to move it for 40 minutes. Now, to put things in perspective, I was so dizzy at the time that I could barely hobble from my bed into the bathroom. I had to ride in a wheelchair to get from the parking lot to my cardiologist's waiting room, where I would nearly faint sitting. Trying to do 40 minutes of walking at that time was absurd. I was monitored, so it was safely absurd, but it was a completely unreasonable expectation nonetheless. My blood pressure was regularly in the 80s over 50s, and I had to give a periodic "dizziness rating" to the tech so that she'd know how close I was to passing out. I often left rehab in a wheelchair after lying flat in recovery and felt utterly terrible for days afterward. If you can push yourself to walk 40 minutes, but it destroys you for the rest of the day (or week!), that is not beneficial. It is best to start out with what you can handle, however small that may be - even 5 to 10 minutes once or twice a week!

Tip 4: Stay below your physical limits to achieve consistency.
(This is for all your overachievers out there.)
I am the kind of person who likes to take on a challenge just because it's hard. I like to overcome obstacles, push my limits, and do the most I can possibly do at one time. I'm often tempted to "beat my best ___" time, distance, or speed. This is not helpful when it comes to conditioning with POTS. If I push my physical limit by walking at 2.8 miles per hour but can manage much better at 2.5 miles per hour, it's far superior for me to walk at the slower pace and not exhaust myself. If I start to feel sick after walking for 5 minutes, it's far better to walk for those 5 minutes than to push myself to 10 and then not walk for the next 2 weeks. A good indicator while exercising is to closely monitor your symptoms and your heart rate. Investing in a reliable heart rate monitor can help guide your level of exertion. A blood pressure cuff may help as well.

Tip 5: Skip at least a day between workouts.
The exertion of a workout (or other stressful event) may cause worsened symptoms for the rest of the day and/or a flare over the next few days (also referred to as "post-exertional malaise" or "crashing"). Post exertional-malaise is a proven symptom in patients with chronic fatigue. Our bodies do not return to baseline after a workout like a healthy person. Instead of bouncing back from walking, I can struggle for over 24 hours with increased muscle aches, dizziness, extreme fatigue, and at my worst, a swollen, sore throat (which I had just this week from overexertion). Be aware of your body's limits, and try to pace yourself accordingly by taking days of rest. It's best to give yourself a break between workouts even if you are healthy. It gives your body a chance to heal.

Tip 6: Avoiding exercise altogether is a bad idea.
There have been times when leg lifts in bed were about the extent of my ability to exercise. If you are that sick, I empathize completely and encourage you to check out Yaz exercises or yoga and deep breathing that can be done in bed (my friend has Bed Top Yoga). If you can get up and move around, it will benefit you to do so. Walking around for a sustained interval helps avoid deconditioning, aids circulation, strengthens muscles, and helps mood (which can suffer tremendously under the effects of chronic illness). Quitting all forms of exercise because of POTS is tempting, but in the end, it will not help; it will only make things worse.

Tip 7: Exercise will benefit you but is unlikely to cure you.
Exercise for dysautonomia is highly beneficial when undertaken with the proper precautions. After 6 years of strict pacing and healing, when I am well hydrated, eating nutritiously, and well rested, I find that I can now walk a significant distance (over 1 mile) without feeling dizzy. Even though I have increased my endurance over the years, I still am far from being "cured."

Does mild-to-moderate exercise help manage my condition? Definitely. However, I still suffer from many fluctuating symptoms, including post-exertional malaise. I am still not able to reliably work a job schedule or keep up with a normal life. I still have bad days and weeks stuck in bed. There are times when I curl up in a ball and literally can't move due to fatigue. There are many times I push too hard and suffer for exceeding my body's limitations (just like spending over your bank account's balance will result in hefty fees).

Exercise has been a key part of my recovery, but it is not the only answer. Be realistic in your expectations and be persistent in pursuing physical activity as tolerated. If you miss a week or a month, come back and start again slowly when you can. In that way, you will continue to teach your body how to live better with dysautonomia.