The Camas is a unique plant that was a food staple of the indigenous people of Canada and parts of the USA. It's often seen on Vancouver island in Spring. In fact it's very unique to this region in Canada. This year it was exceptionally prolific and beautiful. It has an interesting cycle. The plant is grown from a bulb or tuber that the first nations people used to eat. It takes about five years for a Camas to flower.
Everything has its cycles. About 30 years ago I contracted a mysterious and debilitating disease. I couldn't work for many months. I couldn't sleep. Walking, reading, exposure to light and sounds were all difficult. Almost everyone thought it was all in my head. Most of my work colleagues were not supportive. Doctors were useless and just prescribed anti-depressants. The disease was then called Chronic Fatigue Syndrome (CFS) because there was no other way to diagnose it. It was the worst experience of my life. Yes worse than cancer. Because it was not a recognized illness that no one took seriously. Yet it was much more devastating than cancer. It took years to be able to be more active and return to activities or regular work. However life was never the same. I could never ever work full time. I could not engage in sustained vigorous exercise. If I overexerted myself I would "crash" for a few days. Yet I was considered the poster child of recovery from this illness as I tried my best to do as much as possible. I rarely talked about it. If I did, Doctors would stop taking notes. Possible employers or clients would disappear. It was a disease of silence. It's also a disease of terror. When I was immersed in bouts of debilitating fatigue, I thought I was and even wished I was dying. The suffering was enormous. I lived in constant fear that it would come back. Every time I got tired or normally "fatigued" I would panic. But I learned to hide my situation. Then I just ignored it for many many years, until my current onset of leukemia. As the CLL progressed it brought back bouts of fatigue. It was hard to distinguish which came first.
My latest blood work indicates that all my markers (WBC and ALC) are almost normal. The disease is being pushed back. Not cured but on the run, for now. However one of the biggest side effects from the treatment (iBrutinib) is.... fatigue. Yes my old "friend" is back. I am mentioning all this now because last week by chance I saw a movie called "Unrest." It's a documentary film made by
Jennifer Brea a young, smart and talented Harvard student who came down with ME/CFS (as it is now known) and decided to document and expose it. As a result a whole movement has evolved. ME/CFS is the most underfunded yet most debilitating disease on the planet. Millions are stricken and as a result have lost careers, families, friendships, and essentially the lives that they had. This film was sponsored by the MEFM Society of BC and MEVA. Their web sites have a great definition of ME.
So what does this all mean? I often wondered if CFS/ME led to, caused or predisposed me to CLL. There isn't much data on it. And what about iBrutinib? Is the cure worse than the disease? I don't think so. There is some research however that shows the drug is still effective at lower dosages with less side effects. I think this is what I need to discuss with my doctors. That's if I can convince them that my fatigue is real and not "psychological." It's worth a try. It's well known that iBrutinib is not a cure and does not work indefinitely. The disease will come back. That's its cycle. So why suffer now?
Camas field at Playfair Park.
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