Weekend On the Road

We drove to Connecticut this weekend for my niece's 4th birthday and to meet my newborn nephew. I was very excited to see the new baby but was dreading the effect that the busy weekend would probably have on me. My stamina has been especially low lately - probably because I haven't had enough time to recover between big events like the holidays, my son's birthday, and Mardi Gras - and I knew I wasn't really up to traveling.

The weekend started out worse than I had even expected, though. We left at about 2:30 pm Friday. By the time we arrived at my mother's house 4 hours later (bad traffic), I had crashed. I hurt all over, felt completely exhausted even after a nap, and had a sore throat - a sure sign of a severe crash. I was perplexed by what had caused the crash, but I think it was just the combination of rushing around to get packed and a quick trip to the store that morning for a baby gift. That's all it took.

My mother and her husband welcomed us, but I felt so bad I could barely manage to speak. I felt like I was in a fog all through dinner. Much of my extended family has had trouble acknowledging and accepting the severity of my illness. This has caused a great gulf between me and many family members, especially my mother. I try to guess at her feelings, as well as those of other family members, but no one will talk to me openly about what has happened to me. I worry excessively (maybe obsessively is more accurate) about what they think and whether they understand how much I'm suffering. Certainly, no one can truly understand the impact of this debilitating illness unless they live with it. I think that it's been even harder for my family since none of them live close by, and we only see each other for brief periods of time. I think that sometimes they think I'm either exaggerating my symptoms or using my illness as an excuse. I know that, at times, my mother has interpreted my illness as depression, mistaking my inability to interact normally as a personal affront. The truth is that sometimes I'm just too sick to even try to act "normal."

So all of these complicated feelings were at play as I struggled Friday evening with my worsening symptoms. I went to bed soon after my boys did, in the hopes that a good night's sleep would help. Of course, a good night's sleep in the midst of a crash is impossible, and I woke feeling even worse.

We drove to my sister's house, and I tried to nap in the car (didn't work very well). I took another nap after we arrived, then rallied myself to try to attend a bit of my niece's birthday party. It was held at one of those huge, noisy indoor play places. The noise, crowds, and frantic activity were overwhelming. I can't imagine what my sister's friends thought as I huddled in a corner, unable to talk or interact with anyone. Fortunately, my crash began to lift by the end of the party. Even with my poor stamina lately, my most severe crash symptoms don't last as long as they used to.

And maybe it helped to hold my newborn nephew in my arms in a quiet room while everyone else looked after the crowd of 4-year olds running and screaming through the play area. I fell in love with him, so tiny and perfect. Just holding him made me feel serene.

I did a little better on Sunday but still used up all of my energy by mid-morning. Traveling is so hard on me now. I feel like a little old lady who can't sleep away from home. I need my predictable, daily routine in order to be able to function. I was literally counting the hours until I would be back at home, lying down on my own couch in a quiet room. We packed up the car and said good-bye. I knew the next 5 hours would be difficult, but the end was in sight. Then, as we were pulling out of the driveway, we noticed a puddle of anti-freeze under our truck. Our water pump had broken. As we got back out of the car and began making calls to find a garage open on a Sunday, I lost it. I just broke into sobs, feeling silly for losing control over something so minor but unable to stop myself. I needed to be home.

We finally got the truck repaired and got back home Monday afternoon. It's difficult and depressing to be at the mercy of this illness, to feel so helpless against it and so unable to cope. I loved holding my new nephew, but it's so unfair that a simple weekend trip could so totally knock me out.

One Day At a Time

We constantly remind ourselves that we just have to take each day as it comes, one at a time. Some days, like today, it's more like one hour at a time.

I woke feeling horrible, thinking I could not possibly get out of bed...but I had to. I had to help get our sons off to school, had to help our older son catch up on math lessons he'd missed and drive him to the middle school. He was only able to handle two classes today, but we were quite happy with that. He went snowboarding with a friend on Monday. It was a difficult decision, but we let him go since it was so important to him, fully expecting him to crash. He handled it surprisingly well - very sore, achy, and tired for a couple of days but still able to get to a few classes. His stamina is greatly improved since getting the dosage right on his Florinef (a medication that helps to increase blood volume, to treat orthostatic intolerance). I was in much worse shape today and crawled back into bed three times for naps.

Besides my normal trips back and forth to the middle school, today included a much bigger challenge. My husband and I had to meet with the principal of our younger son's elementary school (he's in second grade). The principal and his teacher wanted to discuss our son's extensive absences this year. This was a very difficult meeting for us. We explained that our son has had chronic, recurrent sinus infections, but we also told them about CFIDS. We've been noticing possible symptoms in our younger son for over a year now, not wanting to admit, even to ourselves, that he could also be developing CFIDS. To discuss our fears and suspicions with other people today suddenly made the possibility seem more real. We're still hopeful he won't develop it full-blown; Dr. Bell told us of cases he's seen where kids showed early signs but it never fully manifested. So, we're hoping for the best but need to be prepared for the worst.

It feels like a never-ending nightmare sometimes. How could we possibly bear another child becoming ill? You think you couldn't handle it, but, of course, you do what you have to do, one day at a time.


"You can only see as far as your headlights, but you can make the whole trip that way."
(I don't know where this quote originated, but it's one of my favorites these days)

Happy Mardi Gras!

My husband and I used to live in New Orleans, so we still consider Mardi Gras season a major holiday. We had our annual Mardi Gras party this weekend. Like the residents of New Orleans recovering from Hurricane Katrina, we've had to settle for an abbreviated Mardi Gras celebration in the wake of my illness.

When we moved to Delaware in 1990, we sorely missed New Orleans and began an annual tradition of hosting a Mardi Gras party for our friends. Over the years, our party grew to monster proportions, with over 50 people attending by 2000. I became suddenly ill in March 2002 (after Mardi Gras had passed, thankfully). A year later, as our favorite holiday rolled around again, I still had no idea what was wrong with me, but I was determined not to let it get in the way of our party. I ignored my symptoms and pushed myself through the hard work of preparing for our big bash. I barely remember the party that year. By the time our guests began arriving, I was in a haze of pain and disorientation. The exertion of the past days, combined with the noise and the crowd, left me feeling lost in a fog. I spent the next two months in a severe crash, the worst I'd yet experienced. It was during that low point that I was finally diagnosed with CFIDS.

My husband and I were unwilling to completely give up our Mardi Gras tradition, but the following year we curtailed it back to a manageable scope. We explained to a lot of disappointed friends and colleagues that we had to give up on the big bash, and we invited just a few close friends. For the first time, I accepted my friends' offers to help with food and preparation.

So, we had our annual party this weekend with a small group of close friends. I settled into my spot on the couch, with my feet elevated, for most of the party. I did allow myself a beer for the occasion (we had some Abita, a delicious microbrew from Louisiana), but I drank only about a quarter of it over the course of 3 hours! We enjoyed the company of our friends and the food, although I had to skip the bread pudding with whiskey sauce since I can't tolerate either milk or alcohol.

Still, despite all of our scaling back, I woke on Sunday morning feeling terrible. How sad that I can no longer enjoy a few beers but still feel like I've got the world's worst hang-over! I hurt all over, as if I'd run a marathon (and maybe been hit by a truck, too), slept poorly in spite of Ambien, and felt exhausted. I expected this, though, and settled in for a few days of rest and taking it easy. Those days of recovery are as much a part of the party for me now as the preparations: pick up the shrimp, make a pot of jambalya, order King Cakes, and plan on a few days on the couch afterward.

I realized this weekend that our approach to our beloved party is an illustration of my overall attitude toward living with CFIDS. I've learned (the hard way) that I can't ignore my limits or push past them without severe consequences. I've had to give up many things I used to enjoy and scale back others. My life these days is very different than it was before I got sick, but it's still my life. I've adapted to my limitations, and I try to make the best of what I have to work with. Sometimes, as with our Mardi Gras party, I make a conscious decision to go outside my limits and I know to expect a crash. I've tried hard not to let CFIDS define me. I'm still me. I may not be able to party like I used to, but I can still maintain that party spirit and enjoy the company of my friends.

So, in that spirit, here are some ways to enjoy Mardi Gras, in spite of CFIDS:

- See live webcams and videos of the parades and other festivities in New Orleans at www.nola.com
- Order spicy Louisiana potato chips from Zapp's (all that salt is actually good for you when you have orthostatic intolerance!) Our favorites are the Cajun Crawtators and Cajun Dill chips at www.zapps.com (or 1-800-HOT-CHIP)
- Order a Mardi Gras King Cake from Gambino's Bakery in New Orleans: http://www.cancansys.com/~gambinos//shop/ or look through your yellow pages to find a local bakery that makes King Cakes (we even found one in Delaware)

Happy Mardi Gras!

Is It the Weather?

When my doctor first told me that the weather and seasons could affect my CFIDS symptoms, I thought she was crazy. How on earth could the weather affect physical symptoms? Over the years, though, I've found that she was right.

Yesterday was a great day for me. My CFIDS symptoms were almost non-existent all day, and I was filled with an energy and vibrancy I used to take for granted. I didn't just feel good; I felt vibrant and fully alive. Certainly, my efforts to rest the day before had an effect, as I was determined to pull out of my latest crash in time for the weekend, but the burst of energy I felt went far beyond what mere rest can supply. I felt great in part because of the blue skies, sunshine, and mild temperatures.

I don't fully understand how the weather affects me, but it seems to have something to do with changes in air pressure. The most obvious effect, dating back to before I got sick, are the excruciating sinus headaches I get when a weather front is coming through. Today is one of those days. The wind has been blowing fiercely all day as the temperature drops. I've felt achy all over and have one of those mind-numbing headaches. When the cold front finally comes through, I know that my pain will disappear like a popping bubble.

Although it's always good to be able to recognize these effects and understand what's behind the ups and downs, it's discouraging that the weather affects me so much because it's something over which I have no control (control is a topic in itself, for another day). I can try decongestant and aspirin to reduce the headache pain a bit, but ultimately, I know I just have to wait for the whims of the weather to change again.

Our Approach to Living with Chronic Illness

My son and I both have a debilitating immune system disorder known in the United States as Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Although the exact cause is not yet known, recent research breakthroughs are beginning to identify the genes involved in CFS and unique spinal fluid proteins that exist only in people with CFS. There are no effective treatments yet, although we've found a few approaches that each help a little.

In this blog, I'll share my thoughts as we negotiate the daily challenges of living with CFS.

After almost 5 years with this unpredictable illness, I've experienced all kinds of emotions - anger, grief, depression - and then experienced them all again when my 11-year old son became ill. This illness seems particularly unfair when it attacks children because of the limitations and restrictions inherent in it.

My son and I are the lucky ones, though. We seem to have "moderate" cases of CFS. There are many people afflicted with CFS - both adults and children - who are completely bed-ridden and unable to leave their homes.

We've worked through much of the depression and other negative emotions and have moved into a stage of acceptance, where we're trying to adjust to a "new normal". Our life is quite different now than it used to be, but we're learning that we can still find joy in each day.

Our approach now is two-fold. I remain hopeful that effective treatments will be found and support CFS research as much as I can. Increased medical costs and the loss of my income have made our finances tight, but we donate what we can to research, and I particpate in CFS studies whenever possible. In the meantime, though, we try to accept that this illness is a part of our lives. With CFS especially, it is critical to learn to live within your limits and not fight against the illness. CFS includes a unique characteristic: an intolerance to exercise and stress. Going beyond an invisible limit in either stress or physical exertion leads to a crash, a sudden worsening on symptoms that can last days, weeks, or even months. So, my son and I try to pay attention to our limits. We rest proactively each day and take the time to recover whenever we feel our symptoms increasing.

Here I'll chronicle our efforts to get on with our lives and learn to live with CFS. I'm interested in hearing from others living with CFS as well.