For people suffering from Orthostatic Intolerance, Postural Orthostatic Tachycardia, Mast Cell Activtation or EDS. Follow me as I document my struggle towards better health.

My Inspiration

Postural Orthostatic Tachycardia and Orthostatnc Intolerance can dramatically reduce the quality of life a person experiences.  It is not suprising that sufferers can be depressed and discouraged.  A doctor said to me once "you're unable to walk, you're in pain, you are suffering from a mysterious illness that we can't diagnose, we don't know how to treat this.  Gee, if I were you I would be depressed!"  This doctor was trying to talk me into taking anti-depressants.

In spite of succumbing to this condition several times in my life, I can't say I have ever been depressed.  Negative feelings I have experienced include frustration, discouragement, boredom, anger but not depression.

So why am I pathologically optimistic and happy? (most of the time)




I attribute my outlook on life, in part, to a formative experience which occurred when I was a young woman.  Many years ago I had the great fortune of being able to travel and live in England to get reacquainted with my father's side of our family.  During that time I was asked by my family to work at a special care home founded by Joan Bartlett, OBE, in Ealing called "Servite House".  My Great Aunt, Dr. Barbara Brosnan, ran the place for many years.

Servite House was a home for the mentally and physically handicapped.  My aunt devoted her entire life to improving the lives of her patients through innovative teaching methods, physical therapy and an understanding of the vast potential of the human spirit.

During my time at Servite I had the privilege of meeting and working with the residents; some of whom were recently physically impaired from strokes, car accidents, illnesses and some whom came into this world with challenges such as Spina Bifida.

When I first arrived it was difficult to see beyond the terrible physical and mental limitations these people had.  It took some time for me to understand the courage, determination and the spirit they demonstrated to overcome their daily challenges and lead fulfilling lives.  Their "success" was due in part to Aunt Barbara, who never gave up on a patient.  She insisted that a person come out from behind their handicap.  Their impairment would then become simply a characteristic like having green eyes or a pointy nose.  There was no room for self-pity with my Aunt Barbara.

A remember one young man whose life was interrupted by a motorcycle accident that left him quadriplegic and unable to speak.  When I met him he was learning to use a computer.  He wrote stories, corresponded with others had photographs all over his wall from family and friends.  He was a busy guy between the computer lessons, music, flirting with girls (me included) and other activities.  He had no time for self-pity.

I can't help but remember his courage and I don't remember any complaints, ever.  If the residents of Servite House can overcome their challenges to live meaningful lives then I certainly can....any of us can.  And I don't hide behind POTS. I live my life as a person who happens to have green eyes, a pointy nose and POTS.

4 comments:

  1. Nice one Elizabeth. I think most people miss them difference between depression and frustration, anger etc. I've spent a lot of time convincing my docs that I am neither depressed or anxious, just peeved. I think it's easy to go through periods of feeling down when you are ill but depression is a whole different kettle of fish. Maybe it's the psych in me. Having worked with people who would have all fit into your Aunt's facility you see a different side of life and different ways of coping. I think the thing that has always been clear is the need to discuss how people are feeling in relation to their circumstances. When emotions are suppressed they fester. When aired the person can work through them and move on to a better state of mind. I spent my working life focusing on the strengths of my patients, which everyone had even if some were more well hidden, now I am in the strange place of having to do it for myself. I really wish a lot of our fellow dys had the opportunity to find someone to hold their hand through the journey (something I've started working on).

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  2. Hi Rusty - Thanks for your comment. You make some really good points. There are studies out there which suggest patients who have support recover faster and I agree that it would be nice if our fellow POTS and OI folks could have access to such support.

    I really admire how the breast cancer network has evolved and how it extends support and care to patients. We can learn from that!

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  3. Thanks so much Elisabeth for your blog today. I agree attitude and support have made all the difference to me. When I became ill, I pushed so hard to get answers. When I received answers, I pushed myself to get better and was willing to try anything to accomplish it. The support I have from my family and my wonderful husband have made all the difference as well. Even when I would be at my worst, laying in the hospital or having to use a wheelchair to get around my husband always was there for me and reminded me to laugh and also to be thankful for every day.

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  4. I do not have much support in respect to finances, a place to just go and rest. I have a friend who said I can stay w/ her but not for long - I have to get my own place. What do people do for work? I am lost and scared.
    Kelly

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