Thursday, September 30, 2010

Life as we know it

Unlike "Life As We Know It" with Katherine Heigl and Josh Duhamel, life as WE know it is no romantic comedy. Statistically, 3/4 of marriages affected by chronic illness break up and the proportion is closer to 90% when it's the wife who gets sick; most husbands don't want to be caregivers. While there are patients who have gotten married -- some even while they are sick enough to be in a wheelchair -- the majority of us cope entirely alone because most men don't want to be saddled with a sick wife. Not even one as pretty as Katherine Heigl.
For most of us, there's no romance and the only comedy is when you laugh with your fellow patients about the silly things your symptoms make you do and say -- like the day I was involved in a half-hour conversation with several other patients, all of whom had at least a Bachelors degree, and we kept referring to "thing" because we all knew what we were talking about and none of us could think of the word. Finally another person joined the conversation, provided the word, and got a round of applause.
Living with CFS is closer to a horror movie. You wake up feeling like you should be dead, but no one believes you that you're even a little bit sick. You'll be abused, degraded, tortured, bullied. Doctors will tell you they can't find anything wrong and will ignore your actual symptoms to tell you that you have psychiatric problems (depression, anxiety, hypochondria and attention seeking are the most popular ones). But, as Dr. Starlanyl says, "if all tests are normal, the right tests haven't been done yet." Here are some tests that might be abnormal:
The test for XMRV/Human Gamma Retrovirus is still pretty pricey, but a C-Reactive Protein test is affordable and will prove that you have some sort of infection/inflammation/virus, which should convince the doctor that it's not just hypochondria or a figment of your imagination. Once you have some proof that your problem is physical in nature, doctors may be more willing to think outside the box and find some explanation for your symptoms. Here's the "complete" symptom checklist:
and some alternate diagnoses your doctor may want to investigate:
At first, it may appear that the list includes "every symptom under the sun", which is what leads some people to conclude you have to be faking, but in fact, a neurologist will recognize a pattern. Which is why the research facility in Reno, Nevada is formally known as Whittemore Peterson Institute for Neuro Immune Diseases.
CFS is contagious and caused by a virus, but as yet, there's no vaccine and no cure, which means that anyone can get it; someone you love could be the next victim. But anyone can help find the treatment/cure -- add this link to your bookmarks and use it every time you need to do a web search. At no cost to you, cash will be donated to fund research.
You can also go to the WPI official website and make a donation. That could make for a happy ending right out of Hollywood. The patients are miraculously cured, rise from their beds, and return to real life, falling in love, getting married, becoming parents, playing with sons and daughters who've become accustomed to mom (or dad) spending most of his/her time in bed not feeling well.

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