Frank's
Issue #4
August 20, 2000
Contents: I. Upcoming State of the Science Conference
II. Family Life with CFS
I. State of the Science Conference.The news this month is about the NIH CFS Coordinating Committee, "State of the Science Conference." This meeting is to be held Monday and Tuesday, October 23-24, at the Key Bridge Marriott, 1401 Lee Highway, Arlington, Virginia. The public is invited to attend (but be warned, much of the discussion will be rather technical). There is no charge. For more information send an email to IQ Solutions, Inc, Attn: CFSCC State of the Science Conference, cfsciencemtg@iqsolutions.com, or fax to 301984-1473, or snail mail to 11300 Rockville Pike, Suite 801, Rockville, MD 20852.
This sounds to me like it will be a really interesting event. I only know a few of the presenters but those I do know impress me very favorably. These include David Bell, David Streeten, John DeLuca, Nancy Klimas, David Robertson, and Dedra Buchward.
Sessions will be held on neuroendocrihnology, cognition, chronic pain, sleep, immunology, orthostatic intolerance/neurally medicated hypotension, and fatigue, functional status and disability. Personally I would have liked to see sessions on subgroups, and on children and adolescents. Considered overall, however, the choice of topics and presenters seems reasonable. The hope is that the conference will help form a comprehensive approach to understanding CFS that will benefit everyone who suffers from it.
I plan to attend and will write something about it for this newsletter.
II. Family Life with CFS
CFS impacts family life in many and confusing ways. One of these is that it makes it so hard to plan and carry out family activities. I had occasion to think about this again very recently when taking a trip to England with Sarah, my step-daughter, and my wife, Michelle.Sarah, now almost 18, has been very sick for six years. For Michelle it's three years. During that time the three of us have managed to go to some movies together have done little else as a group. We did see two plays at the Shakespeare Theater in DC (an hour and a half drive), Sarah and Michelle went together to see Michelle's sister in Oregon one summer, Michelle and I have gone out together a few times for dinner or to hear a singer in the local library's Saturday night music series. Recently we spent two days together at the ocean resort, Cape May, New Jersey And that's about it. That was a first for us since CFS first hit our family.
We did, of course, spend many days--weeks of days, many months when all the days are put together-- going to doctor's offices and hospitals!! But somehow that didn't much enhance our family togetherness.
We did often plan to do things. We planned two more trips to Oregon, a number of dinners and plays, lots of outings to the beach--and didn't do them. Sarah was too sick that day or week or month, or Michelle was, or they both were.
And very often we did not plan. Sarah and Michelle's physical bodies were so unstable that planning would have been foolish, an exercise in deliberate futility. I would look at the events in the Friday newspapers and often think, "There, that looks good." But usually I wouldn't even mention it. There was no way, just no way. Then I would curl up with my computer for the weekend. Without being aware of it myself I became very withdrawn.
Sarah has been sicker than most. Bed bound for weeks at a time, on IVs for hydration and infections, laid up by sprains after falling, incapacitated by pain, too dizzy to get down the hall to the bathroom. At one point we thought she might die soon. Michelle has been sicker than most too. During the winter of 1998-99 she because increasingly unable to function. Perceptual problems made it unsafe for her to drive. She was crawling on stairs because of her poor balance and weak legs. She seemed in an irreversible decline.
But we didn't function well as a family even when symptoms were not so severe--at least partly because we couldn't tell what would happen next. Things would look better for a time. We'd plan something, or at least think about planning something. And then one or the other, Michelle or Sarah, would relapse and be unable, and the event would be forgotten.
When we did do things together it wasn't always fun. It was too much work for them, they got too tired, they couldn't enjoy!
But Sarah got better following procedures for internal varicose veins. These huge veins in her abdomen were starving the rest of her body for blood, making all her symptoms much worse. Michelle got better following an operation in Chicago for Chiari I Malformation and cervical spine stenosis. Neither is well, they are still fighting many problems, but some kind of life, and some planned activity, has again become possible.
So we planned the England trip-- 16 days of it. I have a son and a daughter over there and my son had a big house where we all could stay (my daughter, Page, who lives in DC, came too). Scary to plan--it meant putting a lot of money on the line. What if at the last minute someone was too sick and we couldn't go? Buying tickets meant getting up a lot of hope too, and losing hope can hurt far more than losing money. We worried and worried. Did we dare make such a commitment? But it did seem safe. Sarah and Michelle were both sick but they were stable sick, predictably sick. If they did too much one day, they'd suffer the next. If they paced themselves carefully they could do okay. They could do it, we all thought. So the tickets were bought--nonrefundable to make them affordable.
So what happened?
A week before the scheduled departure they both got viruses. Of course!
For most people, casual viruses are no big problem. But people who read this newsletter know that when PWCs get a virus it isn't like "Oh I've got a cold or the flu and I've got to miss work a day or two." It's disaster time! Hugely increased pain, bowels gone totally to Hell, orthostatic dizziness way up, cognitive muddles, weakness. You can hardly sit up at all, much less cram yourself into a narrow seat on an airplane for 8 hours. Even if you do you'll be useless to yourself and to anyone else for a week or more afterward. Some vacation that would be!
These CFS viruses aren't just for a few days, either. They drag on and on.
No virus for me. I got no symptoms whatever--as usually I do not when Sarah and Michelle get sick. These CFS-exacerbating viruses aren't strong enough to attack the healthy, though they can topple PWCS. But we were in luck. This time the virus turned out to be short and mild. The two of them were only down and out for five days. We made it to the plane, we made it to England!! It was hard on them. It hurt them. They suffered on the trip in ways I cannot even imagine, despite how well I know them and how much I try to understand their illnesses. But we made it. My son, Don, picked up us at the airport, Gatwick. And we began to work on the next problem--how to actually enjoy a vacation with CFS in the family.
I'd wake up each morning bright eyed and ready to go. Michelle would drag herself out of bed an hour or two later, trying not to look as tired as she felt. Morning isn't her best time-- is it for any PWC? And a daily round of tourist activity, plus socializing with Don and his wife, didn't leave her as much time as she need to recover from what she had done the day before.
Sarah might or might not get up at all, depending on how she slept the night before, or how active she had been.
So what now?
I like to read and I don't get enough chance to do that at home. I'm too busy. So I enjoyed doing nothing in the morning. By the late AM Michelle would be ready for something. And Sarah might be, or might not be. If she wasn't, she stayed home at Don's, reading, or doing things with her laptop. This wouldn't have worked a couple of years ago, before the internal varices were fixed. In those days she couldn't focus her eyes well enough to read, or think sharply enough to handle text above the level of second or third grade. But those problems have improved and she was happy to read, or watch some British TV, or use her vantage point in a second floor bedroom to keep on eye on the workmen who were building a house next door to Don's. She's learned to endure, to get the best out of what she can do, and to put aside envy against those who are able to do more than she can.
We had a grand time. It wasn't perfect, but we did what we could, and enjoyed what we did, going out alone sometimes, together sometimes, sharing what was possible and putting aside any jealousy or bitterness for the problems that inevitably exist when you are ill, or when others in your family are ill. We have learned, I hope, to do as Mary Robinson describes her own sick children doing in her recent "Parent's Corner" in the Lyndonville News: having "a more positive outlook on life, relishing in their good days, and coping the best they could on the bad ones."
Copyright 2000 by Frank Albrecht. This text may be downloaded for personal use. It may also be quoted and may be forwarded in entirety or in part to other persons, provided it is attributed to me. Other uses are free but require permission.
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