The Orthostatic Intolerance (OI) Center
New Meaning to "No Pain, No Gain"
Orthostatic intolerance is a perfect example of "conscious living" or "mindfulness". You become aware of every activity, no matter how simple. In the beginning, it's easy to let that be your whole focus. In all fairness, many people with OI have had little support or guidance that worked to help things get better. But, there are options, things you can do.
Giving New Meaning to 'No pain - No gain'
In the western culture, most of us have learned to ignore messages from our body and our emotions. We have learned to use our mind, our thinking, to direct our lives. Especially for Type A people, this means coming up with an idea, developing a plan and forging ahead. It is what some call the 'left-brain' approach to life.
It's the "no pain, no gain" or "mind over matter" approach. We ignore the pain or messages from your body and keep going, because the mind knows best. For some people and some things, this works.
It can bring success in school, sports and work. In fact, many of the people who develop POTS and CFS have lived their lives from this perspective.
Changes that come with Orthostatic Intolerance (OI)
But - the 'no pain, no gain' - 'push on through' approach generally does not work very well when it comes to dealing with an illness or medical condition. Our body is telling us we need to pay attention to it. We need to stop and rethink how we are living our life. (Of course, we don't have to, we can keep pushing, but it usually comes back with more problems until we stop and pay attention.)
Adjusting to an illness requires a new approach - learning to notice messages from body, from our emotions and our thoughts/worries. It means respecting what they are trying to tell you and using it to guide how you respond. We are not talking about just "getting by", or 'coping' or 'surviving'. We are talking about "living" & "thriving".
When they first develop OI symptoms from POTS, NMH or CFS, most people have used the "no pain, no gain" approach to exercising. This has resulted in a double whammy - putting stress on the body doing exercising standing up plus ignoring messages from our body that it is tired and needs to stop. The result has been more fatigue and exhaustion. And frustration, anger and a feeling that it's all hopeless, nothing works!
What makes a difference? Who gets better?
In the clinical studies, 2 things made a difference. The difference between those who got better and those who didn't was 1) how willing they were to make changes in how they lived and what they did and 2) how well they managed their orthostatic intolerance.9 Those most willing to make changes and adjust their lives did better. Those who had their orthostatic symptoms under most control did better functioning in their daily life.
New Approach - Become the New You!
So - recovering and healing does mean "no pain - no gain". In order to heal and grow, there will be pain, but the pain is not from our body and muscles. If we have been burying feelings, stressing and worrying, living Type A lives, the pain comes from having to take a long hard look at our lives. It comes from having to feel those feelings, get angry, feel sad, be disappointed - learn how to deal with them and heal them. The pain comes from having to make changes in how we live our lives - if we want to heal, to thrive and recreate our lives.
It means learning to"feel, deal with and heal" the past, the past dreams, taking a chance on dreaming again, and most of all, finding joy, peace and meaning in today.
Some write about "spiritual illnesses" - illnesses that make us take a look at our lives and where we are going, face things we've been ignoring and grow, live our lives from the "inside out".
Recovering and healing from OI requires new skills. These are not skills that are "natural" - that we just pick up from the air somehow when we breathe. They are skills that we have to learn. When things come fast and easy, when we are healthy, we didn't always need all of them. But life is different now. It's time to learn!
This is not something that just the person with OI will go through. Those close, family, caregivers will find they will go through some of the same feelings, deal with grief, anger, sadness, disappointment, lost dreams, lost time, and the need to rebuild dreams and lives and find meaning and joy in what is right in front of us, now, today.
Even Subaru gets it and my cat tried to teach me - it's about now, today, the journey, not the destination!
Kay E. Jewell, MD
Mother, Caregiver since 2004
Physician (Type A!) for a lot longer!
Authors's Note: We will be expanding this whole section in the coming days and weeks. Follow us on Twitter or Facebook to be alerted when more is posted.
Author: Kay E. Jewell, MD
Page Last Updated: July 11, 2012
