My Life With Dysautonomia

I would like to welcome Lindsay (Musings of a Dysautonomiac), my guest blogger for the day. Lindsay and I met quite some time ago as my blog was just getting started. I wasn’t that familiar with dysautonomia until I began following Lindsay’s blog.  Now I will let Lindsay explain her chronic invisible illness to you all. Many illnesses come on gradually – symptoms slowly progress over time –  unable to determine when the illness started.  However, that was not my experience.  I remember the exact day, almost the exact moment I became ill. I was at an outdoor festival on May 17, 2009 here in southern California. I was a little tired, as I had just returned from a week long work trip to Washington, D.C. the previous day, but otherwise was feeling good.  Suddenly I felt very nauseous and while I waited in line to use the bathroom, I fainted on the street. I was taken to the emergency room in an ambulance.  After numerous scans revealed no internal bleeding, I was given an IV and sent home. In the days and weeks that followed, I attempted to return to work (I’m a business attorney) but was so weak and dizzy that I was afraid to walk the ten feet from my desk to the office printer.   At home I would sometimes have to crawl to the bathroom when the lightheadedness became overwhelming. I felt like I was on a rocking boat everytime I stood up.  I was referred to doctor after doctor and ended up seeing a neurologist, cardiologist, pulmonologist, ear, nose and throat, allergist, and physical therapist, none of whom had any idea what was happening. I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, but more for an inability to find anything else to explain my symptoms. It wasn’t until February of 2011 when I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS) by a second cardiologist. POTS is a form of dysautonomia, which means a dysfunction of the autonomic nervous system.  The autonomic nervous system controls all those functions you don’t have to think about – heart rate, blood pressure, digestion, respiration, perspiration and body temperature, among other things.  POTS is characterized by an excessive increase in heart rate when going from lying to standing. The vast majority of people with POTS are women of child bearing age. When humans stand up, gravity pulls blood down to the lower arms, abdomen, and legs.  Your body attempts to counteract the effects of gravity by increasing your heart rate and constricting blood vessels to promote the flow of blood back up and deliver oxygen to the heart and brain. However, in those of us with faulty autonomic nervous systems, this function does not work correctly and we have difficulty delivering blood back up to our upper body.  The body then almost enters a state of panic, the heart starts to beat excessively, and adrenaline may be produced.  The diagnostic criteria for POTS is an increase in heart rate of at least 30 beats per minute, or a heart rate of over 120bpm, within 10 minutes of standing. For those of us with POTS, it feels as if we are constantly running a marathon, every day. Although the diagnosis revolves around heart rate, it is just one of the many symptoms of POTS and the easiest to measure.  Other symptoms include:

• fatigue
• tachycardia
• headaches
• lightheadedness
• dizziness
• heart palpitations and chest pain
• nausea
• exercise intolerance
• cognitive impairment (brain fog)
• insomnia

Although these are among the most common symptoms, POTS patients can have a wide variety of symptoms. I tend to have a sensitivity to light, noise and vibrations. Because it is a “syndrome” and not a disease, most cases of POTS have a cause. Causes can include other illnesses (particularly autoimmune, lyme, mast cell diseases or Ehlers-Danlos Syndrome), pregnancy, vaccinations, viral infection, serious accident or deconditioning. In fact, NASA astronauts returning to Earth develop a temporary case of deconditioning POTS after being in a weightless environment for an extended period. I still do not know definitively what caused my POTS. I’m fortunate that I’m still able to work, as many people with POTS are unable to work or attend school. However, I can only work part-time, and there are not a lot of part-time positions available for attorneys. Career advancement isn’t a priority, or a likelihood, for someone with a chronic illness.  I am often frustrated by how hard I worked throughout college and law school, just to end up sick. I can’t stand for more than a few minutes at a time before becoming dizzy and lightheaded, and can even become symptomatic when sitting for prolonged periods of time. I realize now how I took the simple act of standing for granted before I became sick.  Sometimes I become envious of the people on t.v. and in magazines who are standing, confidently, and don’t look like they are about to fall over. I don’t remember what that’s like. I’m unable to participate in many of the social activities for people my age (35) – I can’t stand around for long, so things like bars, concerts and malls are a no-go.  Loud sounds, flashing lights and vibrations can cause an exaggerated adrenaline response, so I avoid movie theaters and overly crowded restaurants. I am intolerant to heat, so beach days, hiking, or other outdoor activities are often not a possibility. I feel as if I’ve become the opposite of the fun-loving, adventurous woman I used to be. Although my symptoms are not necessarily any better than when I was first diagnosed, there is a level of confidence that comes with experience. I know my limitations and plan my activities around those limitations. The fear behind every chest pain, palpitation and blackout has been replaced with the understanding that they are just a part of my situation now. No one prepares you for what it’s like to become sick, to have your life change in a single moment. I am so grateful to all of the other health bloggers, regardless of whether they have the same illness, and to Kathryn and her book Allergic to Life for teaching me how to live with a chronic illness.  It is very comforting to know that I’m not alone. Lindsay welcomes anyone with questions about POTS/Dysautonomia to reach out to her via email. Her email address is Lindsay@dysautonomiac.com.  Please also take some time to go to her blog and learn more about Lindsay and her struggles.

A Picture is Worth 1,000 Words

Or so the saying goes.  This photo was on MCS Gal’s blog yesterday.  The picture says it all to me!  It is how I have felt many times, just plain invisible despite the mask I wore on my face when outside my home.  I hope you will take a few minutes to visit MCS Gal’s blog and read this post.  We need to keep sharing.

Pain and Friends

Princess and the Pea, a loyal follower to this blog posted a wonderfully written piece on Pain and Friends:  How Chronic Pain Affects Your Relationships.  I have written recently on isolation and dealing with isolation.  This is yet another wonderful piece on how chronic illness whether invisible or not affects our relationships.  I hope you enjoy it as much as I did.

Catch Up Mondays: Isolation – revisited

This post was first posted on May 26, 2012.  Isolation affects not only those of us with chemical sensitivity or other environmental illnesses.  It affects anyone who suffers from chronic illness.  We can’t go where others go, can’t eat what others do, don’t have the energy to do what everyone else is doing, and find it hard to explain this to those going about life like we used to be able to do.  I have written other posts on isolation here, here, and here.

“I pray to God for answers. I ask for His support and encouragement. If I have to live in this pain, in this bubble, in this life of isolation and loneliness the rest of my life, I don’t know what I will do.

Recently I was in contact with a friend who is also a mold survivor.  We talked about this blog and topics that should be covered other than excerpts from my book.  She asked if I was going to talk about Isolation.  I said that I had considered it as one of my topics.  In fact isolation seems to be a general topic and matter of woe among fellow mold sufferers and those suffering from Multiple Chemical Sensitivity (MCS).

I soon began to realize that once my life had changed and I was no longer able to attend indoor functions, be among large crowds, go shopping or out to lunch, I also wasn’t being called or visited.  A majority of my treatment took me far away from home to Dallas, TX.  The longer I was there, the less I heard from others.  It was hard going through all that I went through by myself.  I thought when I finally came home, I would be totally well and everything would be the same as it always was.  I soon began to realize what it must feel like for a soldier to return after many months away at battle.  In my book I write:

I also began realizing what soldiers must feel like after returning from an extended tour of duty. How do you assimilate back into your life? Things keep going on and moving forward but you aren’t there to participate in the moving forward. People carry on conversations but you feel like you were dropped in the middle of a story without access to the beginning. So you just sit there, and you listen but don’t speak.

Things were different when I returned home.  I was still sick and still not able to visit in the homes of friends or go out.  So much had happened after being gone for almost a year (2003) that I felt lost in conversations.  Someone would talk about something that had happened and I wouldn’t have the faintest idea what they were talking about because I hadn’t been there, hadn’t been involved in life at home and hadn’t witnessed changes that took place.  In this depressed state I wrote:

Life Passes Her By

She sits and stares out the window and she doesn’t recognize anything

Life has passed her by and nothing is the same

Where was she when all this happened? She was here but

 Life passed her by

Buildings were built and buildings were torn down

    People arrived and left;

 People were born and people died

Life passed her by

People divorced and others married;

People found new jobs and new hobbies

Where was she—she was there

but she did not participate in life

It passed her by

She reaches out but touches nothing;

 Life is just past her grasp

She stretches and bends and tries again

But life passes her by

She talks to people but it is a jumble to understand what they say

The life she missed is just out of her reach

Life passed her by

I learned through a lot of therapy that there were things I could do to try to lift myself up from the loneliness and desperation.  In another post I will talk about things I and others have done.

My Friends in “The Box”

A blog I regularly follow had a featured post today titled, “My Friends in ‘The Box’.”  I tried to share it here but have not been successful.   A link to this wonderful article is at the bottom of this post.

Some of my friends, like those of the author, are in “The Box”.   They are easily accessible by turning on my computer and reading comments they have written on my blog or by reading of their plight through their blogs.  Some of my friends are, as my husband refers to them, “phone friends”.   Some of these friends I have met in person during my trips to Dallas for treatment.  Some of these new friends I have never met in person.   To me they are more than friends in “The Box” or “phone friends”.  They are my lifeline to someone who truly understands chronic illness.    No matter how many times you talk to your friends or family about this they can only offer support or sympathy.  They cannot offer the kind of support or understanding that someone who is truly walking the same walk can.

I have received comfort from them and hopefully offered comfort to them.  I now have some amazing new recipes that are gluten-free.  I have recipe ideas that I can tweak to suit my own food allergies thanks to many of them.  I have learned of many more chronic invisible illnesses that before starting this blog I had not heard of.  Most of all I have gained understanding and total acceptance by these friends in “the box” who I have never met.

Please visit the following website and read Stephanie’s article. http://www.butyoudontlooksick.com/articles/guest-writers/my-friends-in-the-box/comment-page-2/#comment-137590