Sunday, May 20, 2007

Living with CFS

I can pinpoint when I got sick almost to the day.

It was in September 1997. I had had a very hard year. My father had almost died on the operating table in May, and I had come home to help take care of him for three months. When I went back to Chicago, I had no job, was in debt, and had been abandoned by my boyfriend for someone else. I spent a very difficult couple of months, working temp jobs (not even as an attorney), depressed and barely making ends meet. Suddenly, at the beginning of September, I got a call from the owner of a large software company I had worked for the year before. He wanted me to come back. I dictated my terms. It was a wonderful opportunity.

About three weeks later, I caught whatever was going around the office. It wasn't all that unusual, but I was so tired I could barely get out of bed. I didn't mess around. I went straight to a chronic fatigue specialist I'd heard about on the radio. He ran a large battery of tests, diagnosed me with chronic fatigue, prescribed low-dose cortef, thyroid, and a couple of other drugs, and massive amounts of supplements. Basically, my immune system had depressed to the point where an otherwise non-problematic bug overwhelmed it, and every virus I'd ever had reactivated. I tested positive for everything from mono (Epstein-Barr) to shingles, all at the same time.

After three months, I was only managing to work for two or three days a week, and my parents told me to take a leave of absence and come home for three months.

Nearly ten years later, I'm still here.

I have been to every specialist my GP can think of. I have received additional diagnoses, been taken off of some drugs and put on others, been told by specialist after specialist: "I can't find anything wrong with you," followed by suggestions to take antidepressants. I have been tested for rheumatoid arthritis, lupus, lyme, sleep disorders, endocrine disorders, thyroid cancer, cardiac problems, lung problems, circulation problems, and probably half a dozen things I can't remember right now. I have been to immunologists, allergists, rheumatologists, endocrinologists, naturopaths, chiropractors, accupuncturists, massage therapists, and energy healers. I have tried literally dozens of miracle supplements.

In March 2004 I felt well enough to work part-time. But eventually, I worked too many hours, and once again fell into the cycle of catching whatever went around the office. In early 2005, I couldn't get better. I took 15 rounds of antibiotics over the course of about six months. Once again, I took a "leave of absence" and haven't gone back since.

In addition to fatigue, general malaise, and susceptibility to catching the bug du jour (with very slow recovery), I also suffer from chronic joint pain, some muscle pain, exercise intolerance, low body temperature, cold feet and ankles, low grade fevers, heat and cold intolerance, weight gain, hypoglycemia, hyperlipidemia, hormonal imbalances, brain fog, memory loss, irritability, travel intolerance, post-exertional malaise, thirst, salt cravings, migraines, photosensitivity, dry eyes, TMJ, sensation of chest pressure, shallow breathing--think I'll stop there.  edited to add:  enlarged lymph nodes, which "popped out" very painfully under my arms.

Some of these symptoms may not seem like "real" CFS symptoms. I know that everyone complains about memory loss, for example. I list them all both because I'm trying to be thorough and because in reading about the progress of CFS patients on the MP I have recognized a lot of symptoms that they say are improving that I did not previously recognize as symptoms.

Also, there are several specific symptoms (such as joint pain) that I've had for years that no doctor has been able to explain, which I've recently discovered (from a modicum of internet research) are apparently now-accepted CFS symptoms. They weren't when I was diagnosed.

This is a truly debilitating illness which has entirely changed my life, and the lives of those around me. It's quite likely, for example, that I will never be able to have a family. I will certainly never have a real "career" as an attorney (or a singer!), and will probably remain financially dependent on others, unless I am cured. I have, with no exaggeration or self-pity, lost the best years of my life to this illness. People who knew me before I got sick remember a very different person from the one I am today. I used to be high-energy, always on the ball, seizing life with both hands.

People with CFS on the MP for a year or more say that they have been given their lives back. They feel decades younger. So the MP is very tempting. No one else has claimed to be able to cure chronic fatigue. And I want my life back.

1 comment:

Laurie said...

When you mentioned not being able to have a family, I remembered a Medical Mysteries episode I saw where the lady had lots of symptoms like you. However, when she was pregnant (twice), she was fine. She didn't have CFS but I can't remember what she had. Dang. Sorry. It might have been worth checking into.