Living with fibromyalgia as a Senior
Who will care for whom?
I have written articles about chronic fatigue syndrome/chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities (me/fm/mcs) since I first heard the medical term fibromyalgia in 1997, when I was given that diagnosis, after being misdiagnosed and treated harshly for over two years by psychiatry. The toxic drug therapy I had received caused damage to my body, especially my thyroid and heart. Now, living this past twenty-five years, with this invisible illness, is becoming more difficult than ever before.
At the time of my initial diagnosis, I was a nurse/educator, but I had never heard the word “fibromyalgia”. I had to ask my doctor “what is that”? He gave me an information sheet and told me not much is known about it, there is no medical treatment and you will have to learn how to manage it yourself.
I began my research on the subject and educated myself, starting on my journey to live the best life possible with this infliction. From 1998 to 2004, I facilitated the fibromyalgia Self help group of Newfoundland and Labrador, mailed out hundreds of information packages and set up other satellite self-helps groups. throughout that province.
Over the years, I have written articles “Living with fibromyalgia as a child”, “Living with fibromyalgia as an adult”. I have written and published a book Judging Judi to help educate health care workers and others through the personal experiences I had to face while being misdiagnosed as mentally ill with the second most serious mental illness, Bipolar Disorder. This illness is secondary only to schizophrenia, even though; according to medical psychiatric experts, I had never met the criteria to be diagnosed with Bipolar Disorder, as listed in the DSM Diagnostic and Statistical Manual on psychiatric illnesses.
I was experiencing a toxic drug reaction, which had caused psychosis. This psychosis lasted less than twenty- four hours, once the offending drugs were discontinued. I have been incorrectly labelled with a mental illness for twenty-five years.
In 1998, I tried to have that misdiagnosis of Bipolar Disorder erased from my charts, but the treating psychiatrist, would not admit the error. According to medical policy, the only way to change that subjective misdiagnosis was through the diagnosing psychiatrist. He failed me.
For the next ten years, I went through all levels of the court system including the Supreme Court of Canada, fighting the Canadian Medical Protective Association, which ended up with the physician’s counter suing me for their costs of $170,000, which bankrupted me.
During those years of litigation, I moved from Newfoundland and Labrador to New Brunswick in 2004. I have volunteered my time and energy since then with the National MEFM Action Network, as Director of the Atlantic Provinces and Territories.
I wrote about those devastating negative experiences and published Judging Judi, taking a Closer Look in 2011. I am in the process of producing a second edition, Judging Judi, Ten Years Later to hopefully help others deal with this chronic debilitating illness and the medical mismanagement many of us have to endure. I need financial help to accomplish this.
To this day, these invisible, debilitating illnesses, whatever they are called, are still not being given the same status as other illnesses I can think of, and people are still suffering more than one can imagine. I have been speaking out regarding the mismanagement of patients suffering from invisible chronic illnesses, for more than two decades.
Now in my seventy fifth year, the greatest fear I have though is not speaking in public, not even death, but accidently having my life ended by medical mismanagement before I can have the last word. “I told you so”.
I have written memorandums of misunderstandings to be placed on my medical records. I have filed complaints to the Human Rights Commission and I have also written briefs pertaining to my health history and had them placed on my medical files that are kept at the nearest hospital and also in my doctor’s office. I have a medical alert bracelet with information of my medical concerns recorded. This could be a matter of life and death for me.
From 1966 to 1980, While I lived in five provinces of Canada, my medical history was scattered across this country from British Columbia to Newfoundland and Labrador, so important details of my health have neither been recorded accurately nor consistently.
More than twenty years ago I ran a political campaign in Newfoundland and Labrador advocating for a National Electronic Health Record to be established, which is still not part of our socialized health care system. ‘Confidentiality” they say is the reason why it cannot be instituted. What would be more important than an accurate up to date national health record of our citizens, accessible when required? I can’t think of anything more sensible or important. During that time, a national gun registry was established instead, costing hundreds of millions of dollars, but that restrictive and complicated idea was scrapped a few years later.
Health Care Providers, please pay attention to prevent medical mishaps from being repeated. As I have aged, my medical issues have exacerbated, and: I do not have dementia.
*I am sensitive and allergic to many medications, anesthetics and dyes, so please avoid administering them if possible. I have had adverse reactions to general anesthetics since my twenties.
*I am also sensitive to many drugs, e.g. Adrenalin, Gravol, Demerol, Codeine, Benzodiazepines, Tranquilizers, Antipsychotics, and Hypnotics. The only drug I consume is ASPIRIN PRN, sparingly when I have sudden chest pain that wakes me while I am sleeping. I am also allergic to polyethylene glycol (PEG). I had negative reaction this past year
Because I am allergic to nicotine, tar and other petroleum products, plus strong chemical scents, the main entrance to hospitals, apartment buildings, shopping malls and terminals are the worst places that I have found myself confronted with; and: The air quality is getting worse, possibly due to the legalization of weed.
During the cold and flu season, I avoid clinics, doctors’ offices and all public areas where there are potential infections, due to the accumulation of bacteria and viruses as I live with an altered immune system. This decision of isolating myself has kept me as healthy as possible and off all antihistamines, antibiotics, antivirals and flu shots for years. Life is good! Thanks to my “self care” that I have been forced to practice seriously for the past twenty-five years, I am still alive.
I can only tolerate ¼ to 1/10 of the recommended dosage of many drugs. Both my parents were sensitive also. Muscle relaxants could be deadly. An anesthetist personally thanked me for warning him about my drug sensitivities. After the scheduled surgery, he told me he was surprised when I only needed enough to keep a little bird asleep. At that time, I had also refused the pre-op sedative as I had learned from a previous surgery that I had been very difficult to arouse.
I may develop a high temperature, not due to an infection, but Malignant Hyperthermia due to rigid muscles. (Past medical history in 1985) (infections usually cause my temperature to drop)
Adrenalin and diuretics have to be administered cautiously. My mother died suddenly and peacefully at home, after discharge from hospital, from being prescribed 100mg. Lasix orally, daily; by mistake, instead of ½ of 25 mg. Diazide, q2days. This death has been Legally recorded as a medical error.
I have reactive hypoglycemia where my blood sugar will suddenly dip to dangerously low levels.
I have Postural hypostatic hypotension where my blood pressure will drop quickly, especially when I rapidly go from a supine position to standing. If I stand still for too long, I may faint.
If this happens and they need to start an infusion intravenously, the only vein that is readily available is the one in my left lateral elbow. You will see the scar from other needle insertions over the past fifty years. I have been subjected to a venous cutdown, during an emergency situation in 1976, when I was unresponsive and unable to communicate with the emergency team after a car accident, in Montreal, Quebec. I had lost a considerable amount of blood due to scalp lacerations.
I have been diagnosed by a cardiologist with aortic valve stenosis and mildly insufficient mitral and tricuspid valves. (most likely due to Lithium toxicity that was ignored for over a year from 1995-1996) I cannot lie flat for long periods, especially while asleep, as I will be awakened experiencing chest pain, which brings on coughing. I sleep with the head of my bed tilted at a 45degree angle.
I had been diagnosed by a neurologist with central sleep apnea fifteen years ago, and also with obstructive sleep apnea during the last sleep study. Sleeping with a cpap machine is out of the question as it interferes with my sleep pattern. There has been no other treatment suggested, so I go to bed each night praying that I will awaken, and so far, I have. I give thanks to my God daily that I have been spared to live another day.
I was diagnosed by a specialist with hypermobile joint syndrome, who also reaffirmed my difficulty with Postural orthostatic hypotension by checking my BP many times in different positions and identified many fluctuations.
With hypermobile joint syndrome, pulling me up by my arms may cause serious damage to connective tissues around my shoulders, resulting in severe pain and arm weakness. Can you imagine If I lived in a nursing home, the suffering I would have to endure, if I were not considered competent. (Two police officers accidently injured my shoulders three years ago, while lifting me by my forearms across an icy buildup in my driveway, when thieves had broken into my garage.) They assumed I was hysterical: I was not: I was screaming in pain, which they were causing. This incident should be well recorded on my medical files at the Hospital and hopefully will never be repeated. Please take me seriously, I am not a “psychiatric” patient, so why are the health care providers continuing to treat me like one?
Can you imagine having to live like this? It was only this past winter, when I went to a hospital laboratory for bloodwork, I was again subjected to a considerable amount of stress when the lab technician ignored my warnings of the difficulty of having small veins that collapse easily.
She paid no attention to what I was informing her, and was ready to insert a needle where it would cause me severe discomfort, bruising and definitely no possibility of obtaining blood for the specimen. I quietly and gently informed her she could not do that. She suddenly released the tourniquet and left me, without her saying another word.
Another technician came and drew my blood safely and quickly, according to my instructions. I believe patients should have that autonomy to speak up for themselves when necessary; and have some control over the way they are being treated.
I spoke with the manager of the department and phoned the patient advocate office when I returned home from that ordeal and expressed my sincere feelings of experiencing such lack of consideration and respect, from one human being to another.
I really want to regain trust in the medical establishment and our health care systems, but experiencing so many health care ordeals like the ones I have suffered through, in my lifetime, it is becoming more difficult as I age.
If things do not change for the positive, millions of us living with invisible illnesses will have our lives negatively impacted and our thinking reduced to believing that “Life is not worth living’, while we are being so misunderstood. As human beings, our last thoughts and feelings should be that we have everlasting security that we are understood, cared about and loved.
Written by Judith M.L. Day dated February 17, 2020