Recognize and accept that your symptoms of orthostatic intolerance are due to changes in your body - to low blood flow, low blood volume and low output from your heart when it pumps. There may be other things going on with your body if you have other medical conditions - but this is what is going on with the orthostatic problem.

This is not something to "tough out" or "push through". When you stand up and get symptoms, your body is telling you that your brain is not getting enough blood. Your muscles above your waist are not going to get enough blood - they are going to hurt!

You need to pay attention to that message. You need to do some things that will get more blood to your head and brain. You need to do things that will help your body reverse this - go back to a place where standing up is normal and your heart is pumping enough blood to get to your head within seconds of standing up!

Live your life on purpose.

Think of your life and imagine you are in a sailboat on the ocean.
    •   Are you in the boat with the sails down and no oars.
    •   Are you just going wherever the wind and waves take you-hoping it will get you to that island you want to get to?
    •   Or do you have the sails up? Are you adjusting them to get you to that island? Or to a new destination?

• Create a realistic recovery plan.  It's easy to come up with a lot of dates and things to do that you feel like you "should" do or you "want" to do. You have probably already had a few of those plans - that ended up in a cycle of 'push and crash'. The challenge is to create a plan that keeps you moving forward - at a pace your body can actually keep up with and your mind and feelings don't beat you up over. In the fable about the tortoise and the hare - this is where 'slow and steady' wins the race!


• Decide what your priorities are - what's most important to you - today!   Instead of going through the day doing things and then getting to the end of the day needing a rest but you have lots left to do. It's time to make decisions at the start of the day about what is important to do today, what you need to do yourself, what others can help you do, and what can wait until another day.


• Stay motivated. Being motivated is probably not so much as issue if you have had OI for months or years. You are already motivated - you have shown it in how hard you keep trying to find ways that work. But there are still times when you feel challenged or discouraged, there are ways to support yourself, identify what is in the way, deal with it and get back on track.


• Learn to tell the difference between symptoms and pain that needs to be addressed and when it is ok to deal with it differently.

 

Stress can trigger or worsen OI symptoms. This is because stress results in the release of stress hormones, which includes epinephrine and norepinephrine It increases your feeling of being alert, paying attention to everything around you to watch for signs of danger. It affects all parts of your autonomic nervous system. (To find out more about the body and ANS, check out How the Body Works.

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What To Do About Stress

Some of the patient education material on POTS, NMH and OI gives you 2 options:
      1. Avoid stress.
      2. Cope with it - and suggest long-term approaches like do more physical exercise & relaxation exercises.

These suggestions only go so far.

• It is not possible to "avoid" all stress.
  • In fact, some stress is healthy - it helps move us forward.
  • It's the "distress" that gets in the way.
  • Distress means that we feel overwhelmed - we believe or feel that whatever is being expected of us is more than we have the resources to deal with. We feel our resources or ability to deal with whatever it is we are facing are not enough.
• Exercising more, going for a walk - if you can do it.
  • If you are in the 'exercise intolerant' phase, this suggestion doesn't help much.
• Listen to relaxation tapes is a good long-term approach.
  • You can do them each day to help center yourself, increase your inner feeling of calm and lower your stress chemicals.

But - none are very practical "in the moment" - meaning when you are in a stressful situation, it is not practical to start exercising or to whip out a tape to listen to. You need tools, skills, something you can do right then that will help you. There are tools out there that can help.

Those relaxation tapes might help 'in the moment' - once you get enough practice being calm. In a time of stress - you can remind yourself to take a second, take a deep breath and find that feeling of calm that you get with the relaxation tapes. It takes practice, but it can help you re center yourself so you can think more clearly.

.We will be providing more information, teleclasses and webinars to introduce them to you and teach you how to do them.

Our attitude and perception of stress affects how 'stressed' we feel.

Bottom line: Stress is not something out there that happens to us. Everything, even positive things, can be considered "stressful". Things like getting a new job, getting married, having a baby are ranked pretty high on the stress scale!   What is "distressful" depends on the individual and their life.

Stress is about how we react to things inside. We need better tools or skills. We need to find ways to reduce the body's stress level from the chemicals released.

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Link Between OI Chemicals and Feeling Stressed

There is a connection between feeling stress and the chemicals that are released when you are orthostatic.

There is another factor to think about - the stress response involves the autonomic norepinephrine centers in the brainstem. There is a chemical connection between chemicals released when we stand up and the chemicals released during stress.

Recent studies have been looking at these issues.We will be providing more details and ideas about the connection and what can be done to lower your 'internal' stress level.

  Pace yourself

In the past, you could just go through the day and make everything happen. Now, you need to let your body rest when it needs to. You can even learn how to do things so that you rest ahead of time or after something - instead of waiting until fatigue hits you. You can figure out how to do things in the day, in the right order so you might need to rest afterwards, but you are not exhausted the next day.

There are 3 different approaches to pacing yourself. We will be expanding this in the future. If you are interested, there are some good resources in the CFS websites, check out the Outside Resources.

• There's lots of talk about "goal setting". It's easy to pick a goal and a date you want it done. It's another thing to pick a goal that can really be done by that date. It is also another story to know how to carry out a plan to reach that goal.
  
• Setting goals and knowing how to make them happen is not something everyone knows how to do. It is a skill. A skill that can be learned!
  
• Many with OI, POTS and CFS have set goals and pushed to reach them. Then, they have been disappointed over and over when they didn't reach them. In fact, many push themselves so hard, they crash. It becomes a roller coaster - push and crash, push and crash. They don't want to talk about trying again. There's a theory that describes this pattern - It's called "learned depression".
  
• We will take a look at the skills needed to develop a realistic plan and make it happen.

We've started the discussion with Goals, Plans and Lists and the Plan-Do-Create-Act info.

Feel and Deal  with Fear, Hopelessness, Isolation, Anger & all the other feelings & thoughts that come with OI.

• It's important to realize that many of these feelings are linked to the chemical response to standing up and to the changes in your autonomic nervous system (dysautonomia). There are things you can do to bring the chemicals under better control and adjust how you react to them.
• Some are normal reactions that anyone gets when they get a new health condition that will be with them for a long time. The emotions and thoughts still have to be dealt with.
• Some of it you have learned - it's a normal reaction to your efforts to exercise, make things work and not only did it fail, you felt worse. You got even more fatigue from all your efforts. Finally, you figure 'why bother - nothing works'. This is called "learned helplessness".

More to come!