This past decade has encompassed the worst and the best of my experience with Chronic Fatigue Syndrome. Previously I'd had short but intense periods where CFS symptoms appeared for six weeks at a time, then disappeared till the next time I caught a cold.
But then I went really chronic. Every day for years was shrouded with symptoms that kept me from being able to live my life.
Here's how it went.
2001 - 2002
I had dropped out of my church and my homeschool group. This had broken my heart but I needed to stop draining my puny energy batteries. I felt like I was vibrating all the time. Before I got CFS, I had a great memory. I was the detail person. I could hardly remember being that way -- I could hardly remember anything.
I lost touch with everyone I had known. A few people called or sent me cards but I was too sick to be able to respond.
I was putting on weight like a house a-fire, unlike anything I'd ever experienced. This began to turn around with a low carb diet. I thought for awhile that maybe I was just severely hypoglycemic but a crash in the fall told me this was not the whole story after all.
2002 - 2003
After my autumn relapse, I had a crushing winter crash. My right arm was useless due to joint pain and inflammation. By spring I was beginning to regain some strength, but was now in that limbo where I was well enough to be bored but too sick to do anything, including read or watch television. I sat looking out the window, or slept, most of the day.
2003 - 2004
Once again I improved in the summer. I was like a dull-normal mentally with the activity level of a lethargic couch potato. This was an improvement and I enjoyed the summer sun as much as I could.
That winter I got hit so hard with vertigo I thought I was having a stroke. I spent my 25th wedding anniversary at the hospital having tests done. The next few months I was in bed for 20 hours a day.
2004 - 2005
By spring I could go for 20 minute walks. By summer I was more active and hopeful that I was on my way to recovery. I had moments when I felt fine. But that winter saw a rash of family stressors that leveled me, and I spent every afternoon in bed for months.
2005 - 2006
Funerals and weddings kicked off the spring and summer and left me broken down, with an additional cascade effect of joint pain and inflammation in my arms and hands, legs and feet. I spent most of the summer and autumn in my chair.
I still did not know what was wrong with me. All I knew was laying down and sleeping seemed to take the edge off. I felt my life was effectively over.
2006 - 2007
I was in bed most of the day, except to do some laundry and cook dinner. I spent an hour with my family after dinner then had to go to bed, sometimes with a book, because I had no energy left.
That winter my 15-year-old son was rushed to the hospital with complications from the flu. He has had CFS ever since.
My mother offered to send me to a naturopath she had seen. I said yes. But I had to cancel my first appointment because I was too sick to be able to go.
2007 - 2008
Visits to Dr. Kelly Upcott, my naturopath were the highlights of that year. She had me on supplements, and gave me acupuncture every month. By fall I could go for short walks, and run simple errands. This was a huge step forward.
That fall I had another crash. After reading about vitamin D, I began to take this supplement and for the first winter in years, I was up and about. I even drove the car. I was ecstatic.
2008 - 2009
I crawled forward in my recovery, with short term relapses, followed by small inroads once more. Crashes still came but they were less severe, and did not last so long as they used to.
2009 - 2010
My husband had bought me a laptop and I decided to see if I could earn a living online, since I was still too sick to handle a "real" job. I discovered in the process that I could have a virtual life, joining a few forums and Facebook.
My world expanded in a way that I had no longer held any hope for. I began my website, www.ncubator.ca and a blog. And I began to write for EmpowHER. Life took a wide turn in a positive direction for the first time in many years.
I could not believe my luck. I drank it in like a person who had been dying of thirst.
2010 - 2011
I am still like a dull-normal mentally in many ways. Or perhaps more of an idiot-savant, with a plodding forgetful brain that has occasional bursts of brilliance. I have less energy than a person 20 years my senior but I have learned how to be economical with it and manage to get the important things done, and let the rest go.
I have been doing what I can to share the story of what Chronic Fatigue Syndrome can do to a life, and I have been grateful for the unique opportunities afforded people like myself by the internet.
I am still recovering. And I will tell our story for as long as it takes for this scourge to get the attention it deserves.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Edited by Alison Stanton