Why is this blog?

Why are we here?

There’s recently been criticism in the comments to this blog that someone came here looking for information on fibromyalgia and all she found was personal experiences. But that’s not the reason this blog is here – there are many good websites where you can find medical information about CFS/fibro.

This blog is here so that people can understand the day-to-day reality of living with these diseases, and get a better picture of what it is that we have to deal with: beyond the classic misconception that CFS is just "tired" or "lazy".

Because those of us who live with it, know that you can "tough it out" through tired. We’ve been successful hard-working people, committed athletes, even Olympians – we know about being tired and about working through it, and have done that many times.

What you cannot do is push through when you simply collapse on the floor. All of the stories I hear about people who were forced to leave their jobs contain one of two elements: either they could no longer perform their jobs because of the cognitive/memory dysfunction (an accountant who couldn’t remember how to put together a simple income statement) or because of total physical collapse – the physical inability to do the work. I physically couldn’t lift a file from the floor to my desk, or carry it to the file cabinet, or lift it into the file cabinet – muscles which a few weeks earlier were capable of moving furniture were suddenly too weakened to lift a 5-pound file without dropping it. With my shoulder locked in the down position, it was physically impossible to put anything on a shelf or use the top two drawers of the file cabinet ... the drawers where we kept the active files.

Someone with one of the "acceptable" neuromuscular diseases would get praise for having at least tried, even if they didn’t succeed. Only a CFS patient gets condemned for having failed. Somehow, the compassion that extends to other diseases doesn’t come along with CFS, even when the symptoms are similar.

This blog is here so that people can see that I *did* "get my lazy ass off the couch" to go somewhere, and had to ask a complete stranger for a ride because my legs would not support me one step further. This blog is here so that I can share the days when I walk to the kitchen to prepare lunch, and my knees buckle when I get there, leaving me to eat whatever is stored low enough that I can reach from lying on the floor, until I have enough energy to stand up again. This blog is here so that I can share the frustration of trying to put things away and dropping every single item on the floor in the process of lifting it to its destination. (And to recommend that the CFS patient give away all your glassware/china and replace it with unbreakable plastic cups and plates, so you can drop the stuff and not have to clean up shards. You also may want to get a sippy cup so that you can drop it and only have to wipe up a few drops, not the whole cup of liquid.) This blog is here so that people who assume that I’m just "too lazy to do housework" can understand that doing a single load of laundry takes all week, as the up-and-down bending triggers back spasms so severe that I have to crawl back to bed and endure the spasming pain for hours before I can undertake the next step the next day, and the entire process of doing a load of laundry puts me a week behind on the dishes and mopping.

This blog is not a cheery story of triumph over disability, because Modern Medical Science can do nothing to help me; the only pills that helped the symptom had such terrible side effects that taking the pills made me even more disabled. This is the reality of the day-to-day struggle to deal with a misunderstood disabling disease that garners no respect and little help, and, more importantly, subjects the patients to verbal abuse from people who don’t understand that "fatigue" is merely the tip of the iceberg.

Although one of the theories about CFS has been to encourage patients to just push through the fatigue (and among those who believe it is depression "exercise will give you more energy"), that’s just not the way it works. Researchers trumpeted their "proof" that CFS patients could exercise just as much as healthy controls ... until they re-examined their data and found that after four days of keeping up with the healthy people in the group, the CFS patients relapsed. They wrote a chastened letter to the journal correcting their conclusion. And, in fact, this is the anecdotal evidence in support groups, too – for 3 or 4 days, patients can push themselves to keep up with family and friends on vacation or to attend a CFS conference, but invariably, after 4 days, the patients wind up in bed, admitting that they were "running on fumes" and it was sheer willpower that kept them going on the fourth day.

Hardly the ringing endorsement of the notion that a CFS patient could keep going if they’d just push themselves a little harder. In fact, validation of what CFS patients have talked about for years – the Push/Crash Syndrome. At the beginning of the illness, every CFS patient succumbs to the temptation to push themselves to do a little more on a good day, catch up on the chores, until you learn that pushing on a good day leads to a week or two of bad days. Slow and steady is more productive in the long run than push/crash.

This blog is here to educate those who believe that a CFS patient lives a pleasant life of leisure, where the only symptom is having to regularly indulge in naps. To a busy working woman, being able to nap whenever you please sounds heavenly. Except when that busy working woman is a CFS patient who gets fired for sleeping at her desk, as many of us have.

In fact, my CFS is accompanied by flu-like symptoms ... there are times I spend the whole day in the bathroom. That’s not pleasant, and having to struggle to my feet and hurriedly scamper to the bathroom despite lightheadedness that threatens to have me faint en route certainly isn’t leisurely. Other patients (such as best-selling author Laura Hillenbrand) have constant vertigo and are therefore completely confined to bed. Trust me, it’s not as much fun as it sounds. Neither is six months with a 101 fever my idea of fun, or being able to eat only one bland food for weeks on end because everything else comes back up.

I’d trade you your job for my so-called life of leisure. I guarantee, within a week or two, you’d be begging for your health and your job back. It’s no fun having to constantly calculate "if I cook a healthy meal, I may be too exhausted to bathe" and frequently having to do without dinner because by the end of the day your hands are too weak even to get the foil wrapper off a cereal bar.

The problem is, once I have a job and health, I'm not going to be willing to give them back to you.  My goal for the past nearly-seven years was to get healthy and back to work, DESPITE uninformed doctors whose misguided treatment only made me worse.