Strategies

A Chronic Fatigue Syndrome and Fibromyalgia Journey

Tami Brady

• Publisher: Loving Healing Press
• Year: 2007
• ISBN:
  9781615999316
• Topic: Medicine
• Subtopic: Diseases & Allergies

It is estimated that 4-8 million people in the United States suffer with Fibromyalgia. Another one million also have Chronic Fatigue Syndrome. Some statistics state that Chronic Fatigue Syndrome and Fibromyalgia may directly affect 5% of the world's population. I am one of the individuals in this growing epidemic. In 1997, after a chaotic year of intense medical and psychological testing, I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. I spent much of the last ten years in deep denial feeling alone, confused, frustrated, and angry. It has taken me a great deal of soul searching, but I believe that today I am a better, more centered person because of my experiences. I've never been someone who dictates advice, so my book provides worksheets you can develop to tailor your personal responses to symptoms and crises. It is the good, the bad, and the ugly of my personal journey that I share with you, my fellow Fibromites. My hope is simple, that you will find solace and renewed hope in my words. What People Are Saying About Strategies "This book is a passionate, intense account of one person's conquest over suffering. As a psychologist working with chronic pain sufferers, I can endorse Ms. Brady's philosophy, approach and tools." -Bob Rich, PhD, author Cancer: A Personal Challenge Another great self-help book from Loving Healing Press

1

How It Started

“All growth is a leap in the dark, a spontaneous unpremeditated act without the benefit of experience.”

—Henry Miller (1891-1980)

The spring of 1997 was both a time of great hope and a period of incredible stress. I had been going through a number of major changes in my life. For about four years, I had been working at a local museum as a glorified tour guide. When I first started at the museum, I absolutely loved it. Before that point, I had been a stay-at-home-mom. Before that I was in high school. Despite the seeming hopelessness of my situation, I had always hoped to go to university and study archaeology and history. Working at the museum was my personal test to see if I really liked history enough to focus on it for a living. Secretly, I also wanted to be sure that I was smart enough to actually take in large amounts of academic information.

I started out at the museum as a volunteer and although I am a fairly introverted person, I blossomed as a tour guide. Before the first season was complete, I was asked to take a paid part-time position the following year.

I read every local history book I could get my hands on. I listened intently to my supervisor who was a wealth of information. It felt great to share my newfound knowledge with others and freeing to have amazing academic conversations with my colleagues. My self confidence rose to new heights until I actually believed I was smart enough to go to university and earn my degree.

In the summer of 1995, I started taking university level correspondence courses in history and anthropology with the intention of transferring over to the local university full time in the fall of 1997, when my youngest child started school full time. Although the course work was demanding, I fell into university study like I had been born for it. I was organized and managed to take care of my duties at home, at work, and still get good marks. I felt I was ready for more.

In 1996, the museum hired a new curator. This new curator wasn’t a people person like the previous one. She micromanaged, was straight by the book, and brought with her a wave of political chaos that left everyone feeling undervalued and attacked. Staff members took sides, volunteers quit, and everyone was miserable. I eventually dreaded going to work. By the spring of 1997, I was more than ready to quit and start full time university classes.

At home, my life also started to fall apart. My father-in-law was preparing for open heart surgery. It was agreed that he and my mother-in-law would stay with us during the process. I don’t think I had a clue what I was in for and I don’t think I was realistic in my vision of what this surgery might entail.

I love my in-laws and even believe that they love me in their own way. However, we have never really gotten along. To this day, I’m not sure if it’s because we are so very different (different lifestyles, values, belief systems, and life goals) or if it’s because we are so very alike (all or nothing thinking, unable to share our true feelings, and most importantly a strong sense of family protectiveness). The truth is that I think I agreed to my inlaws stay at our house just so that they would accept me into the family and love me the way I needed to be loved by them. I was so very naïve.

We soon found out that heart surgery isn’t a one time event with a few weeks of stress. My father-in-law had almost a year of tests and consultations before the actual surgery. A few times a month, he and my mother-in-law would stay with us for a week or two for another round of tests or yet another set of appointments. We were all stressed, frustrated and scared. We all wanted to get the operation done and over before my father-in-law had another heart attack. No one talked about the “what ifs” but these unsaid thoughts took over every aspect of our lives. The surgery was eventually scheduled for the fall of 1997, just as I was entering university.

There was no doubt that I was under a lot of stress (from work, the worries about my father in-law, the financial stress of housing two extra people, and the anxiety over starting university in the fall), so it didn’t really surprise me that I got a lot more colds during the winter of 1996-97. It seemed like I would just get rid of one bout of flu and the next week I had a cold. I was getting pretty run down and bitchy but I persevered.

Later that spring, I had what I thought was a really bad case of the flu. My body was one big ache and the fatigue was debilitating. It knocked me flat on my back to a point where completing daily chores became almost impossible. This was definitely not a good situation when I already felt that my in-laws thought that I was a bad housekeeper and wife.

I eventually went to the local clinic to see if there was something I could do to get over this horrible flu bout. Regrettably, the appointment didn’t go quite as I expected. The doctor told me that I could have glandular fever (a.k.a. mononucleosis) and took a blood test. Now, I was really upset. I was sure that the only way I could have contracted mononucleo-sis was if my husband was cheating on me. After all, in high school everyone called it “the kissing disease”. I was pretty angry and it was a long week until the tests came back negative.

Unfortunately, even though the tests were negative for mononucleosis, my worries weren’t yet over. The doctor told me that he had no idea why I was sick but that it was definitely something because my white cell count was irregular. I believe he told me to consult my family doctor but that’s a little fuzzy in my memory.

The next few weeks were a blur of bad getting horribly worse. I was tired and depressed. I was so ready to quit my job that I could feel the bile rise every time I thought about the museum. At the time, I was leading a team of guys undertaking historical reconstruction of vertical log buildings. Basically, we carried logs, we cut logs, we dug trenches, we put the logs in the trench, and then we buried the bottoms of the logs. In good health, it was tough work (made particularly difficult by being the only woman on the crew and a good 75 lbs lighter than most of these construction-type guys). Although I had done this work the year before with few problems, I noticed that I got tired much more quickly this season. My aches and pains never seemed to go away. My back was always hurting. I was pretty miserable.

Then, one day I was planting a log in the trench and my legs gave way. Everyone thought I had just slipped but I knew something was very wrong. There had been a few times when my legs felt like lead and every step sent shooting pains up my legs. My vision had also been acting erratically. I could see perfectly fine one moment and then a fog would impede my vision for a few days.

I was beginning to become concerned and quite frightened. My Dad’s sister had just been diagnosed with Multiple Sclerosis. Many of the symptoms she described sounded just like my issues. I was terrified that I also had MS, so I made an appointment with my family doctor.

Let me say that I really don’t like doctors. I’ve had a lot of bad experiences with them. When I was a child, I was severely hard of hearing. Although I was a regular at the doctor’s office (a seemingly constant stream of colds and flu made worse by a myriad of different allergies), no one ever noticed that I had a hearing problem until it was brought to their attention by my kindergarten teacher, who noticed that I was adept at reading lips. When I was seven, they found the cure to my hearing difficulties, by accident during a tonsillectomy. Once my tonsils were taken out, I could suddenly hear perfectly. Evidentially, my adenoids were so large that my eardrums couldn’t vibrate properly, causing the hearing loss.

When I was sixteen, I was diagnosed with endometriosis. This diagnosis took several years with countless doctors telling me that my pain was all in my head. Eventually, after I suffered from a cyst in my ovary, a specialist found the problem. Without any sort of gentle bedside manner, he abruptly told me that I would never have children. Not only did this news send me into a deep suicidal depression but he was wrong. I was blessed with three healthy naturally conceived children before I was 22 years old!

My final pregnancy was quite difficult. I started having contractions in my fifth month of pregnancy and we were all terrified that I would lose the baby. My family doctor somewhat callously told me that the longer my child stayed in the womb, the more likely “it” would survive. She gave no instructions for bed rest and no strategies about how to deal with severe cramps that lasted 4-8 hours every day. I ended up at the hospital several times sure that it was time to deliver the baby just to be sent home with a feeling that I was being silly. When my son eventually did arrive (5 days late), my labour pains weren’t at all regular, and lasted an hour and a half total. We didn’t even get a chance to get to the hospital so my husband caught our son as he entered this world.

After that pregnancy, I knew having any more children would be too risky. We had gotten lucky to get a healthy full term child but we knew that trying again would be pushing it. I made arrangements with a specialist to get my tubes tied and cauterized. He agreed to do the tube tying but felt that I was too young to make a rational decision on the cauterization. My grandmother had had several babies after her tubes were tied and failed so I was quite adamant on making sure that this procedure was permanent. This doctor tried bullying me and even tried sneakily setting up the procedure he wanted, but eventually I got what I wanted.

These experiences really negatively coloured my view of doctors. I thought that most medical practitioners were insensitive, arrogant and incompetent. I felt that if you had anything more than the common cold (take liquids and get some rest), that medical practitioners had no clue what to do to help you. Far too often, their reaction was that if they didn’t know what to do it about a particular condition, it must somehow be in your head.

I have since realized that doctors are merely human. Just like the rest of us, they’d rather be golfing than giving us a pap test and pray for a quick easy day so that they can get home to friends and family. Who can blame them?

Despite my misgivings and past bad experiences, my family doctor at the time seemed quite competent and sincere. When we discovered that my second daughter had a strange lump on her chest, our doctor had been diligent. A CAT scan was arranged in no time and the lump was quickly diagnosed as a harmless lump of cartilage. Throughout the whole experience, my family doctor seemed to understand our concerns and was more than willing to help make sure that no harm would come to our child.

If any doctor could help me with my own health problems, I felt this one could. Besides, if I did have MS, I wanted to know sooner rather than later. At least that’s what I thought at the time. In retrospect though, I’m not so sure I really wanted to know the truth. I definitely wasn’t ready for it. How could I have possibly known that my life was about to change so very, very much?

2

The Doctor’s Visit

“Don’t tell your problems to people: eighty percent don’t care; and the other twenty percent are glad you have them.”

—Lou Holtz (1937-)

The next year was an extended exercise in frustration and futility. By the time I got to my doctor’s appointment my symptoms were rapidly getting worse. My legs hurt and were weak. My knees buckled regularly. Under regular circumstances, I don’t sleep a lot. I tend to sleep best in the hours before midnight and don’t get much rest after that point. Four or five hours of sleep is usually more than enough for me to survive but at this point I was rarely getting two good hours of sleep each night. My vision went wacky sometimes, often for a few days at a time. I was confused and kept getting my opposites (right and left, north and south, up and down, etc) mixed up.

My first visit to my family doctor went fairly smoothly, if not very genially. She gave me a lot of grief for not having had a regular examination for a few years and told me she was sure that my thyroid was the problem. Then my doctor went on an all out tirade, telling me that it was my fault that the condition worsened to such an extent because if I had regular checkups she would have found the thyroid condition before it caused all these problems. Now, given the severity of the situation, the medications might not bring me back to normal. At the time, I felt she was right to berate me because I was in the wrong so I took what bordered on abuse without any sort of resistance.

I was immediately sent for tests to check my thyroid and another appointment was made. It was expected that the doctor would give me medication and lay out the lifestyle changes that needed to be made at this next appointment. This was obviously not meant to be.

In the weeks that followed, my condition continued as it had. In the interim, I started school and my father-in-law finally had his surgery. Actually, I started school the week that my father-in-law had his operation.

I loved school and did very well in the classes but there were several situations that were quite unbearable, especially at first. I had been brought up in a little town of under 10,000 people. Until, I was six, we had lived outside of town and I saw very few people who weren’t relatives. During this time, our only trips into town were to the doctor every few months when I needed medical care. When I was six, we moved into town, which was a complete shock to my system and I became incredibly shy. To say the least, going to a university that had 40,000 people was a little difficult to endure. For the first three weeks, it took every ounce of courage I had not to run home and hide. Fighting the fear of the crowds was absolutely exhausting.

The situation with my in-laws made matters worse. Tensions were high and my in-laws react quite differently to anxiety than I do. After his surgery, we went to visit my father in-law once a day for a short visit. I had been raised in a family where hospital visits started when visiting hours began and ended when the staff finally kicked you out each night. When the patient slept, the waiting room became a temporary refuge. Flowers and presents were brought to cheer up the room. At the time, I couldn’t comprehend that my family’s actions indicated love, compassion, and hopes that my father-in-law would take the rest he so desperately needed. I also didn’t realize that we all react differently to stressful situations. I thought that my mother-in-law was cold and that my husband was in complete denial.

By this time, I regularly walked with a cane (euphemistically named George) and my legs were like rubber most of the time. My temper was short. My generalized pain and fatigue were getting so bad that I could hardly function. Keeping my house clean to my mother-in-law’s standards (which I had never managed to achieve with full health) was impossible. I felt like my in-laws treated me like I was faking my symptoms to get attention or because I was lazy. My husband was pretty distant, for obvious reasons, so I had no one on my side. I was pretty miserable.

The tone of my next doctor’s appointment was slightly different. As you probably guessed, I didn’t have a thyroid condition. I could tell that the doctor was completely at a loss. At the time, I thought she handled this pretty well. She began testing me for every conceivable illness or condition known to man. I had all sorts of blood tests and urine tests. I’m really not sure what these were all about but on the next visit she told me that she had ruled out chemical imbalances, vitamin deficiencies, accidental poisonings, cancer, diabetes, lupus, and a myriad of other complicated-sounding conditions.

The doctor admitted that she was stumped. It was then that I told her that I was concerned that I had Multiple Sclerosis. I told her about my aunt’s history of the condition. My doctor listened and said that she thought that this might be a big possibility given my symptoms and the family history. She arranged for me to see a neurological specialist.

The waiting time for the consultation was six months.

During this time, my in-laws stayed at our house just as regularly as in the previous year. There were even more follow up checks and more doctors’ appointments than there had been before the actual operation. My father-in-law also ended up in the hospital for his prostate. At this point, I was convinced that my in-laws hated me even more than they had before the surgery. I also realized that we were never going to be best buddies and they were never going to hug me and tell me that they were glad that their son married me. Every “visit” threatened to end my marriage as my husband and I fought horribly.

School became my refuge of sorts. I had made a few friends, my marks were good, and a few of the professors even knew my first name. I loved the energy and feeling of hope that resounded in the hallways and in the classrooms. My favourite place was the library. Here, I read every book I could get my hands on. I particularly loved writing papers because I got to spend weeks filling up my backpack with books that I read all night when I wasn’t sleeping anyway. Although I was constantly in pain and the fatigue was often unbearable, for the first time in my life I felt like I was exactly where I should be.

The visit to the neurological specialist was quite trying to my patience. I took the day off school, which was frustrating. Despite all of my pain, fatigue, and having to tromp around the campus with my cane, I only missed three classes during my entire university career. This w...

Table of contents

• Cover Page
• Title Page
• Copyright
• Dedication
• Praise for Tami Brady’s Strategies
• About our Series Editor, Robert Rich, Ph.D.
• Table of Contents
• Preface
• Chapter 1 How It Started
• Chapter 2 The Doctor’s Visit
• Chapter 3 Denial – Part I
• Chapter 4 Denial – Part II
• Chapter 5 Denial – Part III
• Chapter 6 The Reality Check
• Chapter 7 Transitions
• Chapter 8 The Big Symptoms
• Chapter 9 Individual Strategies
• Chapter 10 My Own Worst Enemy
• Chapter 11 Prevention is the Best Policy
• Chapter 12 Flexibility, Unconditional Love, and Daily Life
• Chapter 13 Summary of My Strategies
• Chapter 14 Marshalling Your Resources
• Appendix A - Medications and Supplements
• Appendix B - Resource Guide
• Bibliography
• Index
• Regaining Control