Strategies - A Chronic Fatigue Syndrome and Fibromyalgia Journey

1

How It Started

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...