It's All In My Head

My health problems are in my head—literally. Research, monitoring my heart rate for 3 months, and Dr David Bell’s home test http://aboutmecfs.org.violet.arvixe.com/Trt/TrtOIBellTest.aspx  have led me to this conclusion. I have a form of orthostatic intolerance known as POTS (postural tachycardia syndrome). For some mysterious reason, my heart rate fails to adjust when I go from lying/sitting to standing. Initially a healthy person’s heart rate increases when making that postural change but returns quickly to a slower rate. Mine does not, making me feel as though I am running even though I am standing still. This rapid heart rate results in cerebral hypoperfusion; a decrease in blood flow to the brain.

Cerebral hypoperfusion causes the symptoms which have plagued me for ten years and for which I was given the diagnosis by one doctor of fibromyalgia. These symptoms of fatigue, lightheadedness, headache, exercise intolerance, and cognitive impairment also seem to mimic Chronic Fatigue Syndrome.

However, when I allow my brain to get the blood flow it needs, I feel a thousand times better.

And this is how I take care of my brain:

1)      Avoid prolonged standing and sitting.
2)      Rest as needed.
3)      Adopt postures that aid in maintaining an adequate blood flow to the brain: sitting in a low chair or any way in which the knees are close to the chest.
4)      Eat a low carbohydrate diet; high carb meals cause vasodilation.
5)      Maintain a liberal fluid and salt intake to ensure that the blood vessels are filled adequately.
6)      Improve physical conditioning and endurance through activity such as rowing and using a recumbent bike.

The symptoms of POTS are exacerbated for me when living at high altitude. My home has been Colorado but this summer I lived on the coast of Maine. Unlike healthy people my heart rate remains high and fails to accommodate to the lower saturation of oxygen in the atmosphere of Colorado. I feel much better at sea level.

I Love Edward Hopper's Art

A few days ago Kim and I saw the art exhibit “Edward Hopper’s Maine” at Bowdoin College. I love his art. Even before knowing who the artist was I have long admired his paintings.

Art conveys beauty or truth or both. Hopper’s paintings are stark but they magically distill beauty down to simple elements. His ability to portray sunlight and shadow is exquisite.

He captures the beauty of wind, sea and sky in his paintings of sailing. Ground Swell communicates the adventure, excitement and fun of sailing.

Ground Swell

The Long Leg reveals the peace and tranquility yet hints at the tedium.

The Long Leg

 He brings out the beauty of the simplest, most ordinary buildings.

Early Sunday Morning

Many of his paintings lack human figures but when they are there, they are often lonely, detached figures, absorbed in thought or intent on a task. This illustrates a truth about the loneliness of being human. We come into this world alone and we die alone. What makes life worthwhile is being able to connect with others. But this is an area where we often fail. Selfishness, pride, fear of intimacy, and fierce protection of our fragile egos inhibit community.

Automat

Summer is for Sailing

One of the joys of this summer is putting our boat Manuella back into the water. For various reasons we have not been able to sail for several years and she has been languishing in storage. But now she is sitting in all her glory tied to a floating dock at a marina close to our house in Maine.

Sailing is a great sport for one who suffers from POTS (postural tachycardia syndrome). I have always loved sailing but in my mountain climbing days I disparaged it for being too sedentary. That doesn’t matter to me anymore. Now it is a plus to me that sailing does not demand a lot of upright posture. Instead there is a lot of sitting, squatting, short bouts of climbing and the occasional opportunity to lie down and rest. And the sitting that is involved is not necessarily inert. It involves a lot of core muscle tension and subtle exercise as one maneuvers around in sailing activities. In addition there is the aerobic exercise of rowing out to the boat and back in the dingy where one can maintain the advantageous recumbent posture. Just the right kind of exercise for a sufferer of POTS.

Do I Have POTS or ME/CFS/CFIDS?

Both my life and my blog have been put on hold as I have recently gone through a time of transition. Life has been more challenging as I have been without the companionship and support of my husband as he has been in another part of the country helping his parents move into an assisted living apartment; followed by his staying with them when his father suffered a massive stroke two weeks later. It has been a very stressful time for us. Out of the past six weeks we have been together for less than two and a part of that was during the sad and busy events surrounding his Dad’s funeral.

Before all this happened we had planned to live in Maine for the summer. I have gone ahead and traveled to Maine without him. The upside of this time of chaos and grief is that I feel much better physically living in Maine.

 

 I have always observed that I feel better at sea level but the heart rate monitor that I have been wearing in recent months has given me objective data. My heart rate is a good 10-20 points lower here than it was in Colorado. I feel better and I have less fatigue.

My major symptoms are:

Fatigue

Post-exerional malaise or exercise intolerance
Cognitive problems-brain fog

Each of these are identified as symptoms for both POTS and ME/CFS/CFIDS. So I am left wondering…

Still Reveling over Mother's Day and Baffled by our Colorado Springs (no pun intended)

My Mother's Day bouquet from James

  I have been enjoying the memories of Mother's Day all week. I woke up that morning assuming it would be a quiet day with Kim. It was a lovely, warm spring day as Mother's Day should be and I was happy for all the mothers who had various activities planned with their families. Sadly, there was no expectation of seeing Sarah on the east coast or Sean on the west coast and I assumed our youngest, James, was busy with his work at a nearby Camp. But James surprised me early afternoon with flowers and a thoughtful gift. We had a pleasant lunch on our deck and I felt blessed. In the evening I heard from both Sean and Sarah via phone and the nature of their conversations gave me additional joy.



Dining al fresco on Mother's Day

 

Even the recent snow cannot dampen my happy memories of Mother's Day!



Artistry with Strings

I urge anyone who lives in or visits Colorado Springs to take in some live theatre at the Simpich Showcase Marionette Theatre. It is a rare and magical piece of art that entertains and inspires as it tells classic tales and reveals spiritual truths. I was recently enchanted by a moving performance of John Bunyan’s allegory Pilgrim’s Progress in this small, intimate theatre that is perfect for a performance with marionette puppets.

Beautiful puppets adorned in period costumes bring the story to life. David Simpich uses deft movements of his hands and myriad voices with the twenty some puppets to dramatize the story. I am amazed at the many skills he uses to create a flight into fantasy as artisan, craftsman, playwright, actor and stage technician.

Although he convinces the audience that it is the puppets who are talking he resists remaining a silent presence behind the marionettes. He unobtrusively becomes a player as well, touching the audience with his warmth and humanity.

This theatre is beyond the understanding of very young children. But I have good memories of taking our children to these productions years ago when they were old enough to appreciate them. And I look forward to the time when my grandchildren can share this extraordinary experience with me.

ME and OI

I have made a new discovery in my continuing quest to find out what is wrong with me. I was cognizant of orthostatic intolerance as a medical condition but until recently the thought that it had anything to do with me was far from my mind. But I have learned more about it through following Sue Jackson’s blog Learning to Live with CFS: Heart Rate and Post-Exertional Crashes in CFS and Orthostatic Intolerance

The old wheels started turning and I began to explore and research OI. I started to keep track of my pulse and discovered that it did indeed race when I was standing or even sitting upright at a desk. This is known as postural tachycardia syndrome (POTS) and is one of the common forms of chronic orthostatic intolerance. I bought a heart rate monitor so that I could keep better track.

What it comes down to is this basic formula:

When the numbers are down = feel good
When the numbers spike = feel lousy
When the numbers spike for too long = post-exertional crash

It is nice to feel that I have some control now. When I don’t feel good (headache, fatigue, lightheadedness, brain fog) I can correlate it with my upright posture and increased heart rate. I get relief by adjusting my posture; sitting cross-legged or with feet elevated, crouching, reclining or lying down. I can also use my heart rate monitor to take note when the numbers are going up and change my posture to prevent the painful symptoms.

I now wonder if my health problems are due to orthostatic intolerance rather than myalgic encephalomyelitis/chronic fatigue syndrome. Or maybe it is just that OI is part of ME/CFS.

It would be very comfortable for me to adopt the Japanese custom of sitting on the floor at a low table.