Once Upon a Chronic Lyme Lifetime
By Janet F. Murray
Having your dreams cut short due to an illness like Lyme or other tick bite infection is a painful experience for anyone. This pain is even more apparent when you don’t know whether your dream is deferred or entirely out of the question. I speak for many when I say that Lyme and tick bite infections do that without respect or remorse. The only ones to deal with the effects are the victims, who are left feeling confused, angry, fearful, and depleted.
My Sub-Lyme Journey
My journey with Q Fever and Spotted Fever began many years ago before I completed the first year of my life. In the first chapter of my book, My Sub-Lyme Life, I state:
“Rickettsia, Borrelia burgdorferi on one side of the ocean; Lyme disease on another side. By whatever name, these miniscule, infinitely small spirochetes, or bacteria in more common parlance, carried by ticks, fleas, and other creatures, are exponentially destructive. They rob health and create enormous fear and confusion, especially when they escape the radar of a precise diagnosis. As a result, I stopped dreaming at age 17 as I had no idea if I would make it to my 21st birthday.
Above left: My Sub-Lyme Life is a memoir about the author’s physical, emotional, and mental struggles with tick bite fever.
Here I share some parts of my journey with you that are not in my book, My Sub-Lyme Life.
Many Medical Diagnoses
Despite my first infection of Q Fever as an infant, I would wait many decades before receiving what seemed to be an accurate diagnosis. Before then, members of the medical profession diagnosed me with muscular dystrophy and sporadic distal myopathy.
About 15 years after receiving a diagnosis of tick bite infections at 38, another doctor decided I had multiple sclerosis. His opinion was unasked for and unwelcome. On infrequent trips to see doctors in between, I would be met with derision when asked what my diagnosis was. These experiences are pretty standard for those who find themselves exposed to people in the medical profession who are illiterate about Lyme and similar diseases. Likewise, by the time I received a diagnosis and began treatment, my symptoms were so chronic that recovery seemed out of reach. It turned out this was true.
Physical “Lyme” Symptoms
As so many ordinary people can confirm, the symptoms of Lyme infections are many and varied. Mine began with a seizure from a high temperature in my first year of life. Heavy nosebleeds followed at about five years of age, together with severe bouts of tonsillitis. Measles followed along with full body rashes later (x 2) when I acquired Spotted Fever on my youthful adventures.
None of these symptoms were a cause for alarm. The fear started in my early teens when my right foot turned inwards, hitting my right ankle and causing a painful sore. On the advice of a physical therapist, my mother took me to a specialist who visited our town once a month from a nearby city.
“What do you want to do when you finish school” he asked.
“I want to be an actress or a model,” was my reply.
The look on his face halted my dreams in their tracks. Physically, it was downhill from there. The weakness crept up my legs and hands – slowly, inexorably. The headaches started – mind-blowingly painful, lasting three days at a time with no relief other than sleep. Except, as a young working woman, that luxury was not available.
As benign as these symptoms may seem on paper, they were far more extensive and destructive in real life. I am also aware that I am lucky compared to others whose symptoms have been and continue to be far worse. I started off using a manual wheelchair in my early 30s.
When it became apparent that it was inadequate, I changed to a power wheelchair. It would take another 20 years before the first pressure sores under my feet would appear. Global inflammation became a lifelong companion. As so many ordinary people can confirm, the symptoms of Lyme infections are many and varied.
Above left: Me (Janet) with Thomas, the love of my life – 2021.
The Emotional Impacts of Lyme
Of course, we have control over our emotions. However, youth and inexperience tend to laugh at this fact, especially when fear is a driving factor. Will I live for another month, five years, what? Will I die soon? Do I have a future? The thoughts and uncertainty can be torturous. The unknown becomes your biggest adversary because it is invisible. No one has any answers, least of all those gods in white coats, leaving you to wonder what life is all about.
I partied. I drank. I went out with guys and eventually married one. My insecurities would not allow for a healthy partnership. To make things worse, he put a gun to his head one night (more details in my memoir). His loss left another gaping wound in my life. Even though we’d been going out for about ten years, we had only been married for a few short months.
Anger. Rage. Hopelessness. Helplessness. There was never a thought to give up but only to take short breaks in between the driving urgency to find answers and for recovery. None came, except at 38 when I came across a doctor who specialised in treating infectious diseases. The antibiotic treatments helped, at least relieving the blinding headaches, restoring some energy levels as they did some damage to the infections having a buffet in my body, the signs of which were evident in my liver. A second marriage did nothing to boost my self-esteem, robbing me again of any prospect of a normal life.
The Mental Toll
My mental faculties remained primarily intact for a long time. It was only after the stresses of my relationship with an alcoholic in my early 50s that my reserves of strength began to waiver. The brain fog had been with me prior to antibiotic treatment. Still, with this new stress, I became forgetful and struggled to maintain clear thoughts. Other signs of mental toll include becoming depressed and anti-social (or maybe that’s just part of getting older)!
Lyme’s Twilight Time
I work as an SEO (Search Engine Optimization) content creator. As I write, I can no longer keep my head up because this disease has affected my neck muscles. I do what I can to earn an income and care for myself. My fingers still work, thankfully. If I want to move my right arm, I must pick it up with my equally weak left hand. The concern is ever present as to when this disease will affect my heart muscles. There are days when I wish it would be soon. On others, I hope for more years and the restoration of my health.
Purchases of my book help support various charities that the publisher selects. My book is also available in a digital format. Please leave a review and share, as your feedback helps to sell books. I appreciate your support.
Janet Murray was born in a small South African town with four older brothers. She was a typical child with the usual childhood illnesses until a strange disease slowly stripped away her strength and mobility.
My Sub-Lyme Life: A Memoir of Perseverance