By Ali Deckoff-Jones
The first months of the New Year have presented me with new challenges. Many of my symptoms like fatigue, pain, and brain fog are drastically reduced. I have the energy to write on a regular basis, something I could never do before ARVs. However, I have spent these last three months housebound because of a brand new symptom.
Every time I try to leave the house, I am struck with horrible episodes of dysautonomia. My pulse races and my blood pressure drops. I get dizzy, pale, nauseated, and my hands turn to ice. But the worst part of the episodes is the element of panic, an anxiety so intense I feel as if I am going to die. This anxiety seems to be secondary, a result of the physiological imbalance rather than its cause. I seem to be suffering from too much sympathetic tone – an overdose of the flight or fight response.
In my experience, certain symptoms like fatigue and PEM are a constant presence; it is simply a question of severity. Other symptoms seem to come in clusters, making life difficult for a few months and then fading away. I am hoping this will be the case with these new episodes. In the mean time I am experimenting with natural ways to deal with them like biofeedback, neurofeedback, and EFT. It seems unlikely that any of these things will be a cure on their own, but hopefully a combined effort will help to reduce the episodes to something manageable.
The reason I bring this up is because the episodes have brought a new question to my mind. While it is true that the episodes are largely physiological, there is an obvious psychological component. A fear component. I am afraid of the episodes, and that very fear makes the episodes worse. It is a vicious cycle.
What am I afraid of? Many answers come to mind, some logical, some less so. I am afraid of being sick, and I am even more afraid of being sick in public. I am afraid of being helpless and losing control of my body. I am afraid of going out and getting sick, disappointing the people I am with by ruining their plans and messing up their day.
Fear has invaded other parts of my life as well. The episodes have made me terrified of being alone lest I should have an attack with no one around to help me. They have also made me afraid to travel. As my mom continues to broaden her horizons and rebuild her career, she is going to be traveling a lot. It is becoming inevitable that I will have to spend a lot of time alone or gather the courage to travel with her. Both options are terrifying.
More than anything, I am afraid of change. My life has become so static, so stagnant, and I am afraid of the unknown. Logically, this is ridiculous. Why would a CFS patient, whose life is so full of suffering, be afraid to change things up? It seems like anything new and different should be an improvement. Any progress or evolution should be a good thing. Still, the fear remains.
But the more that I confront my fear, the clearer my mind becomes. I am unwilling to let this fear rule my life. I am unwilling to let it tear down all of the progress that I have made. Yes, the episodes are a significant problem, and they make me feel horrible, but they are not life threatening. I know that they make me feel deathly ill, but I am not going to die. If I can learn to control the fear, then maybe I can learn to work past these episodes and regain the steps I have made towards a normal life.
I am determined to start going out, and I will face these episodes head on. They are the only thing holding me back, and being locked away in my house is becoming unbearable. I am going to fight my fear every way that I can.
Will I succeed? Of that I am not sure. But one thing is certain: if I succumb to my fear, if I give up without trying, failure is inevitable. And the result of that, a life forever caged, would be the most terrifying thing of all.
Removed from the stress and pressure of eleventh grade, my health slowly improved, but I never reached another full remission. The biweekly Bicillin shots alleviated the worst of my symptoms, but fatigue lurked over my shoulder, constantly taunting me with its presence.
That summer my cousin and my brother’s best friend from Sedona came to visit. Spending time with other kids was a nice distraction from the disappointment of the last year. Unfortunately, the joy of that summer was marred by health tragedy. My mother had an accident while horseback riding that landed her in the ER with a concussion. The head trauma precipitated a full blown crash and a cluster of severe abdominal migraines that sent her to the ER multiple times that summer. I did my best to remain oblivious to what was unfolding around me, trying to enjoy what remained of my vacation, but the stress of my mother’s illness was weighing me down.
A few weeks after my cousin went home, I woke up one morning with my left arm paralyzed and numb. I couldn’t move it at all, and I couldn’t feel anything above my elbow. My father and grandfather rushed me to the ER because my mother was too ill to accompany me. My grandfather was a vascular surgeon and the rock of our family. As I was waiting to be seen, he examined me. He tried to hide his worry, but I could tell that he was truly concerned. I had never seen him scared before, and I knew at that moment that whatever was happening to me was serious.
I tried to remain stoic, but I was terrified. The nurses poked and prodded me, sticking me four times before succeeding at getting an IV in place. A harried ID doctor rushed in from her private practice, clearly irritated at the interruption, to do a neurological exam. She was harsh and blunt and doubted my diagnosis of Chronic Lyme Disease.
I tried to fight back tears and terror while my grandfather made inappropriate jokes to try and keep me distracted. I distinctly remember being horrified at his politically incorrect comment about a Sikh in a turban and hospital gown. Still, I appreciated his company and constant presence.
A few minutes later they wheeled me away to get an MRI and CAT scan. Much to my relief, I was already beginning to regain feeling in my arm, but there was no way I was going to avoid a complete battery of tests. The testing passed by in a blur; thank goodness I was not claustrophobic. But more anxiety was in store when we heard the results of the MRI. The doctor had found a small spot in my brain; it was in the right location to cause my paralyzed arm. I remember more terror as the word ‘stroke’ passed though my mind.
St. Vincent’s Hospital in Santa Fe did not have a pediatric ward, and my ER doctor decided that I needed to be sent to the pediatric ward at the University of New Mexico Hospital in Albuquerque. They loaded me in an ambulance, and my dad rushed home to pick up a few of our belongings before driving down to meet me. The EMTs in the ambulance were the nicest people I had met all day. They distracted me with stories, including one about seeing Jessica Simpson on the site of her newest movie. The frivolous, non-medical chat was a soothing relief.
By the time I reached UNM, my arm was functioning normally again, but I had a lingering headache. I spent four long days in the UNM hospital attached to heart rate monitors and constant IV fluids. I was examined by countless people – nurses, neurologists, attending pediatricians, psychiatrists. Some of them were polite; some of them were crass; all of them seemed doubtful about Chronic Lyme Disease. The questioning, sometimes accusatory looks grew wearing.
The nights were worse than a bad dream, filled with blaring lights, wires attached to my chest, and the scuffling noise of the hospital. There was one premature baby in the ward whose heart rate kept dropping, setting off a blaring alarm every half hour or so. The days were filled with bland hospital food, the distant cries of children, and more invasive examinations, including multiple psychiatric evaluations.
On the final day of my stay, they gave me a spinal tap. The test itself was terrifying and painful; the headache and nausea that followed were worse. Finally, they told me the test had come back negative, and I was discharged with a diagnosis of atypical migraine.
Meanwhile, my mother was undergoing trials of her own. The physicians were blatantly clueless to what was wrong with her, labeling her with various incorrect diagnoses. Their continual mistreatment that summer brought her to the brink of death. She spent months in and out of the hospital unable to eat. She was finally rushed into emergency surgery at midnight, and after a transfusion, they had to remove a foot of her small intestine.
It wasn’t until a few months later that my mom received the records of my stay and discovered that my spinal tap had in fact not been clear, but contained some white cells. We now recognize their mistake as a blessing in disguise; had they treated my abnormal spinal tap, it would have been with steroids, and my mom was too sick to intervene at the time.
The hospital’s complete incompetence in both of our cases was and still is astounding. They judged and doubted our diagnoses simply because they were unfamiliar with them. The current medical system is unable to think outside of the box in any way. If a diagnosis isn’t on their radar, they will not only miss the true problem, they will make the problem worse. As I reflect on this experience, all I can do is shake my head and think that it is no wonder so many people are terrified of hospitals. They should be.
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I’d like to take this opportunity to announce the creation of a forum specifically for young adults with ME/CFS/Lyme/MCS/Mold Illness etc. etc. etc. ;) The group was created by an online acquaintance of mine who is planning on upgrading the site to a social networking platform. It is a wonderful opportunity for young patients to meet and interact with others who suffer from the same illness. There is a nice mixture of medical and non-medical discussions taking place on the forums. Currently, the group is limited to patients under the age of forty. The forum can be found at: