Thursday, March 30, 2006

It Was Good While It Lasted

Histimine molecule

Well, that was an exciting run - one whole day of feeling good. Wahoo!

My allergies started to act up again last evening, and I woke up feeling awful this morning. This is something that has fascinated me ever since I first got sick with CFIDS...how can you sleep for 9 hours and wake up feeling worse than when you went to bed?? I'm doing OK now, just not full of energy like yesterday.

So, did my allergies make me feel poorly today or did I do too much yesterday, kicking off a post-exertional crash that made me over-react to allergens? Which came first, the chicken or the egg?

I seem to have developed a new allergy in the past week- how exciting! For the past 10 years, I've had fairly low-level allergies to dust mites and molds that are pretty much the same year-round. I take some allergy medications and don't think too much about it. Last week, after our overnight at the beach, my eyes suddenly became horribly irritated - sore and constantly watering. Yesterday was the only day in the past ten days that I've been able to wear my contacts (and I don't have much patience for glasses!). This happened to me last summer when we went to South Dakota, but it's rare for me to have such an acute allergic reaction here at home.

I saw my doctor today, just my every-few-months check-up. I'm very fortunate to have a doctor who understand CFIDS. She's often not able to do much other than listen, record new symptoms, and refill my prescriptions, but it's still comforting to see her, to know that she's there in my corner if I need her. She had some suggestions today for additional allergy medications and told me that allergies are off the chart for everyone around here right now. I guess we're paying for our unusually warm winter.

So, I'll try the things she suggested and will hopefully get some relief for my poor eyes. Of course, the irritated eyes aren't the real problem; when allergies flare up, so do all my other CFS symptoms. The achy legs and lack of energy are far worse than having to wear glasses.

I'm very much looking forward to camping this weekend. It's always so relaxing for the four of us to get away together, with no stress or pressures. Now I just need to get through the next 24 hours of packing and preparation.

Wednesday, March 29, 2006

Slow and Steady Wins the Race

I'm back! After a week and a half-long crash nestled in a month of barely getting by, I feel GOOD today. What a treat!

Even the weather cooperated today. After a mostly cold March, today truly felt like spring with bright sunshine and 70 degrees. Here in Delaware, forsythia blooms at this time of year. Its vibrant yellow blossoms along roadways, fields, and neighborhoods represent spring to me.

I reveled in a forgotten sense of freedom today. Not only did I feel good, but both of my boys felt good and were off at school. My wonderful and incredibly patient friend Amy has been waiting weeks (months?) for this unlikely alignment of the stars so that we could go shopping together. We went to Trader Joe's, a fabulous whole foods store, and I stocked up (never know when I'll be able to get out again).

Ironically, now that our cupboards and fridge are overflowing, I ordered Chinese take-out for dinner! I've learned the hard way that shopping can easily use up my allotment of energy for the day. To also cook dinner would be asking for trouble.

It's so hard to moderate my activity level when I feel good. I want to do everything and make up for lost time. It still astounds me that exercise can feel so good when I'm doing it and result in my feeling so horrible a few hours later. I've long believed that this unique and mystifying reaction lies at the heart of unraveling CFID's secrets.

So, I'm taking a break but still enjoying this gorgeous day. I brought the laptop out onto our deck in my reclining chair to absorb all of this sunshine and sweet spring air. We're planning to take our pop-up trailer out for the first camping trip of the season this weekend. I need to pace myself so I can make the most of this fleeting gift of energy.

Friday, March 24, 2006

Hope, Part 2

The first time I read The Anatomy of Hope by Dr. Jerome Groopman, I was pretty much at rock-bottom. It was at the end of my second year with CFS, and I was in a terrible relapse. I was feeling that my health and my life were entirely out of my control. This book had an immediate positive impact on me (to see my full review, check out my book blog).

Although Dr. Groopman is an oncologist and the patient stories in his book deal mainly with cancer, his conclusions about the nature and power of hope are relevant to anyone living with chronic illness. In addition, Dr. Groopman recounts his own 20-year struggle with debilitating back pain. He describes living with pain and restrictions in a way that is familiar to anyone with CFS:
"The boundary of my life was like an electrified fence at the perimeter of a prison; if I ventured too far and tested it, I was thrown back from the shock of its force into my confinement. If I stayed inside the fence, I was somewhat safe. So, I assessed each movement and task of the waking day for its distance from that perilous perimeter."

Dr. Groopman carefully defines hope as just one aspect necessary for healing, not a miracle cure. He echoes my own feelings when he points out that many of the popular books on the power of positive thinking blame the patient if positive thinking alone doesn't cure them. If you're still sick, you must be doing it wrong.

Instead, Dr. Groopman defines true hope in words so comforting and encouraging that I have hung them over my desk:

"Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them.

There are real options and I have genuine choices.

What I do can make a difference.

My actions can bring a future different from the present.

I have some control over my circumstances.

I am not entirely at the mercy of forces outside myself."

I found these words so empowering at a time when I felt I had no power over my body. It helped me immensely to realize that, no matter how debilitated I felt, there were always some things I could do to help myself: read an uplifting book, watch a funny movie, get outdoors for some fresh air, take better care of myself, and rest when I needed to.

I've always felt strongly that life is all about choices, that you need to take responsibility for your own life and not be a victim. Now I realized that I had fallen into a victim mentality since becoming ill. It's pretty easy to do, when such a debilitating illness suddenly seems to take over your life.

Groopman's book made me recognize that I still had choices, within the confines of my illness. I could decide when to rest more or when an activity was worth risking a crash. Even at my worst, I could decide to stay in a positive frame of mind rather than wallow in self-pity. Besides feeling better spiritually, replacing negative emotions with positive has some real physical benefits. We know that people with CFS don't respond to stress well, that our brains don't produce the right amounts of stress hormones at the right times. It's reasonable, then, to accept that reducing stress and negative emotions will at least help to prevent a worsening of our symptoms.

So, after succumbing briefly to despair one evening this week, I reread The Anatomy of Hope and tried to make the best of my bad week. I read a lot, wrote on the laptop when I was able, watched a great movie (Elizabethtown), and listened to some favorite music. I also made myself go outside each day, even if I could only make it as far as the front yard, to feel the sunshine and fresh air and watch my boys play. It may not seem like much, but just knowing that I have some control over my life helps a lot.

Wednesday, March 22, 2006

Chronic Illness and Hope


In search of comfort and inspiration today, I turned to one of my favorite books, The Anatomy of Hope by Dr. Jerome Groopman. As with earlier readings, Dr. Groopman’s stories of how hope (or its absence) deeply affected his patients’ lives pulled me right in and invited me to compare my own sense of hope with the tales in his book.

After reading about several patients who lacked hope, who gave in to despair, I thought about my own situation. I try to be optimistic (which Dr. Groopman says is different than hope), but what are my own barriers to true hope? I certainly think that my condition may improve somewhat over the years, but I realized that I don’t truly believe that I can recover.

In part, my scientific background gets in the way. I’ve read everything I can about CFS and follow all of the research closely. I know that scientists don’t yet know what causes CFS or how to cure it. I know that there are no effective treatments (yet). Worst of all, I am painfully aware that very few people ever fully recover; various studies estimate a recovery rate of somewhere between 2 and 10%. My analytical mind has absorbed those statistics and made them a part of me.

Dr. Groopman tells one story that really sticks in my mind, of a pathologist colleague of his who was diagnosed with a particularly deadly form of stomach cancer. He knew, from his own professional experience, that the recovery rate for this cancer was almost zero. Only 1-2% of people with this cancer live six months after diagnosis; less than 1% survive to nine months. Yet, this pathologist, with this scientific knowledge deeply ingrained in him, ignored the death sentence and embarked on a difficult treatment path that most of his colleagues thought to be foolish. He allowed himself to believe that he had a chance, albeit a tiny one; he beat the odds and survived.

I’ve tried to convince myself similarly that I can be among that 5% or so that recover from CFS. Sure, it’s unlikely, but why not me? Oddly enough, though, when I occasionally read of someone’s miraculous recovery from CFS, my first reaction is not inspiration but skepticism. I think they were probably misdiagnosed to begin with; they couldn’t have really had CFS because there’s no cure for it. How do I overcome this skepticism and encourage true hope in myself?

The uncertainty and supposed controversies surrounding CFS make matters worse. With the public and even some doctors doubting the severity of CFS, if not its very existence, what would it mean if I were to recover in the absence of a known medical cure? I know intellectually that this is an absurd thought, that I would welcome any relief from this devastating illness. Emotionally, though, it’s a fear lurking beneath the surface. Would recovery somehow negate the suffering I’ve endured these past four years or the plights of so many other people with CFS? I need to find a way to get past these illogical thoughts so that I can picture a better future for myself.

I certainly have no trouble picturing some improvement in my future, and I often focus on that goal: to find ways to improve my condition, a little at a time, to improve the quality of my life and my ability to do the things I enjoy. CFS requires a careful balance of hope and acceptance. Some level of acceptance is necessary in order to get through daily life and avoid crashes. To ignore my limitations would be to sentence myself to constant relapses. I am constantly searching for the right balance and for ways to keep real hope alive in my heart.

Tuesday, March 21, 2006

Riding the CFIDS Rollercoaster

Another song stuck in my head today:
When I get to the bottom
I go back to the top of the slide
Then I stop and I turn and I go for a ride
Till I get to the bottom and I see you again...
- Helter Skelter (Beatles and remade by Cheap Trick, U2, etc.)

Whee! In case you haven't guessed, I'm at the bottom of the slide today. Sometimes I just get so sick of these constant ups and downs.

We had a very nice weekend. For the first time in weeks, no one had a fever or required urgent medical attention! We took advantage of our good fortune Saturday and finally made the trip to the beach that we've been putting off for weeks. We've all really been looking forward to this little tradition of ours, escaping to the beach for a mini winter vacation.

We packed up Saturday morning (we've learned not to make advance preparations!) and headed out of town in high spirits. It was cold and windy this weekend, but the sun was shining and the change of scenery was just what we needed. We walked on the beach and deserted boardwalk, ate lunch at our favorite fish & chips place, browsed through bookstores, took a swim in the hotel pool, and just took it easy. Not easy enough for me, though, I guess.

My stamina has been very poor lately, and I guess I was on my feet too much, even though it didn't seem like much at the time. I could tell I was crashing by Sunday morning as the familiar aches crept into my body. I tried to pull back - sitting in the sand watching my boys play, sitting on the floor of the bookstore to browse the lower shelves - but it was too late. By Sunday night, I felt horribly sick, and Monday was a torturous blur spent flat on my back. I'm doing slightly better today - well enough to sit up briefly and use my laptop anyway.

I try so hard to stay positive and optimistic, to accept my "new life" and make the best of it, but sometimes it just seems unbearable. I hit bottom last night at bedtime, sobbing to my husband. At times like this, the thought of living like this forever is terrifying.

How can an easy-going 24-hour getaway make me so sick? How can I achieve my writing goals if I'm unable to make commitments for fear of not being well enough to meet them? I love to travel, to see new places, to explore the world, but I can barely manage a single night away from home.

OK, deep breath. I need to vent my frustration, but I also recognize that I have to try to regain my more optimistic outlook if I hope to feel any better. Stewing in self-pity only makes me feel worse.

First I need to remember all that I have to be thankful for. No, I don't have my health, but I do have a wonderful husband and children who bring a lot of joy to my life. And I do recognize, even during my darkest times, that I am truly fortunate not to be even sicker. Whenever I go through a bad crash like this, I always think of all the people with CFIDS who feel that bad every single day. I just read another wonderful article about Laura Hillenbrand. She's been far sicker than I have, for far longer, and look at what she's accomplished. What an inspiration!

Most of all, although it sounds trite, it's crucial for me to just focus on one day at a time. Considering a lifetime with this illness is too overwhelming. Thinking about all that I want to do with my life in light of my current restrictions is just too depressing. Better to focus on small goals, on getting through each day, even each hour. So, today I'll try to take advantage of this forced downtime to read some more (another thing I'm grateful for, that I can still read!). I'll rest aggressively to help myself get back to where I was as soon as possible, maybe some gentle stretches later. One...day...at...a...time.


Tuesday, March 14, 2006

Sitting Here in Limbo

For the past few days, the title lyrics from a song by jazz-duo Tuck and Patti have been running through my head: “Sitting here in limbo.” That’s exactly how I’ve been feeling – in limbo.

We had another weekend filled with illness. This time it was 11-year old Jamie. He had a fever of 103 on Saturday and has been coughing since Thursday. With his CFIDS-activated immune system, it’s unusual for him to catch a virus, but when one does make it past his defenses, it really knocks him out. Today is his 6th day with a fever, and the cough and congestion have been keeping him up at night. He came for breakfast this morning crawling on his hands and knees because his legs hurt so much he couldn’t stand up.

The worst part about this weekend’s confinement was that the weather was unseasonably perfect, with sunny days and temperatures in the 70’s. We had planned to take a mini-vacation down to Rehoboth Beach here in Delaware this weekend and were all disappointed to have to cancel our plans.

Craig was feeling fine, so my husband, Ken, was busy keeping him engaged all weekend, while I stayed home with Jamie (other than a trip to the pediatrician’s office). This division of child care makes sense, since my stamina is still pretty low, but I’m getting a little stir crazy.

Yesterday was the worst of it. Craig was home sick from school. It was another Monday crash for him, with a mild fever, aches all over, headache, and lethargy. This seems to happen a lot, probably because he’s more active on weekends. It’s another depressing reminder of the specter of CFS that hangs over our house. Both boys felt too horrible yesterday to do much of anything, so I just tried to make them comfortable. We watched a DVD on ancient Egypt since Jamie is studying it in Social Studies, ate lunch, took naps, and watched far too much television. I did manage to get all of us outdoors in the afternoon, with our three folding lounge chairs lined up under a tree and covered with a selection of books for each of us. The isolation was made even worse because our internet service was out all day, removing my only connection with the outside world.

I’ve been mostly confined to the house for 10 days now, either taking care of sick children or trying to recover from my own crash. Eleven days ago, I wrote in my journal, “I’m so sick of running around. I just want to stay in our house and rest.” Be careful what you wish for.

This kind of waiting-and-resting state is familiar to anyone who lives with CFS. Some days (or weeks) or just like this. If you push when you’re feeling so-so, you’ll soon be feeling worse. If you want to avoid a severe crash, you have no choice but to rest. I’m still in this in-between state, not fully crashed but unable to do much. I don’t know whether I’m still recovering from last’s week’s bad crash or whether my immune system is reacting to the presence of Jamie’s virus, but my throats starts to hurt and my legs ache after minimal activity. I’ve learned that these are my early-warning signs. If I ignore them and keep moving, I’ll soon feel worse. So, for now, I’m sitting here in limbo. At least my internet connection is working today.

Thursday, March 09, 2006

CFS + stress = crash

Today has been one of those surreal days when I'm barely able to function at all, moving through the minutes and hours in a fog of pain and exhaustion.

The stress of this on-going school battle is taking a toll on me. I've been surprised to find, over the years, that emotional stress brings on the worst CFS crashes, even more severe and long-lasting than those caused by physical exertion. I understand the basic biology at work - how my brain and endocrine system don't respond to stress with the right amounts of various biochemicals, like cortisol and adrenaline - but I'm still unable to stave off the crash.

I've learned, through trial and plenty of error, that I can keep myself feeling better if I can maintain a zen-like sense of calm and serenity. I've succeeded to some degree in changing lifetime habits and learning to let the minor frustrations of life slide by. I'm better now at staying calm when a crazy driver cuts me off or I have a long wait in a doctor's waiting room. I remind myself constantly of how much I have to be grateful for and make a conscious effort to notice the small joys in my everyday life.

I've been amazed at how much my emotional state can affect my physical state. Understanding the biology helps. It's not that I think I can cure this very debilitating and real physical illness in my body; I'm just aware of how emotions - and especially stress - affect my biochemistry. This has worked fairly well for me much of the time. I'm definitely doing better overall than I was during those early days of uncertainty and depression. And whatever my physical condition, I feel better emotionally and am more content with my life.

There are times, though, that outside events get the best of me, and stress knocks me out like it has this week. Once that reaction begins, it's a vicious cycle that builds on itself. The worse I feel physically, the less able I am to control my emotional state, and the worse my emotional state becomes, the sicker I get physically.

I'm doing a little better this evening, well enough to type at my laptop in my recliner for a few minutes. I even came out onto the porch, to enjoy the last rays of sunshine on this beautiful day that has brought a hint of early spring to the east coast. The outdoors never fails to perk me up a little, even on the worst of days.

Now begins the slow climb back out of the crash, once again.

Wednesday, March 08, 2006

CFS and School

A few days ago, I said that after a relaxing weekend, I was ready to take on whatever came my way. I should know better than to tempt fate like that!


We are finding ourselves once again embroiled in major conflict with Jamie's middle school. I say "finding ourselves" because we certainly aren't looking for these battles. We have no idea why the school has suddenly begun to balk at accommodations that have been in Jamie's 504 plan (a plan of accommodations for kids with disabilities) since October. He's doing wonderfully in school, getting to three classes a day, rarely missing a day, and working with a fabulous homebound tutor for the other two classes. He's gotten mostly A's all year long.

We requested a meeting with his math teacher about 6 weeks ago, to address some concerns she had with Jamie's "poor performance" (that's the one class he got a B in during the 2nd marking period). We took her concerns seriously and reviewed his homework and tests. We noticed a pattern - with longer assignments or tests, Jamie would start making tiny errors toward the end. He understood the concepts but would transpose numbers, miscopy an answer from a worksheet to the test, or make simple arithmetic errors. We were surprised to learn that, not only is this very common in CFS, it even has a name - dyscalcula.

We couldn't wait to share our new insights with his teacher, but she kept dragging her feet about meeting with us. We figured that once she understood what was going on, she could make some minor adjustments like allowing Jamie to take tests at home, in short intervals, as he'd done occasionally before.

That was over a month ago. She refuses to meet with us and has gotten the principal involved (he's never even met Jamie and has nothing to do with the 504 process). He now says that we can't even talk to the teacher until we present a doctor's note with support from the district level. He also said he will not allow Jamie to take tests at home (something that's already a part of his 504 plan).

It's just a mess, rife with conflict and stress. We are stunned that such a minor, innocent request has turned into such a big controversy. I'm spending my week on the phone with the school district and doctors. I'm sure this will all be resolved, but it's so frustrating right now.

I wish that CFS wasn't so poorly understood by the general public. It seems that the teacher and principal might be thinking that we're trying to take advantage of them - an absurd thought to us! We're just trying to help our son have a level playing field with his peers, so he can reach his full potential. We don't even care about the grades, but we'd like for his teacher to have a more accurate understanding of his strengths and weaknesses.

Hopefully, we'll make some progress tomorrow.


Tuesday, March 07, 2006

A Rough Morning

Today is one of those days when it was torture to try to wake up and get out of bed. Just taking a shower has completely wiped me out. How pathetic is that? You'd think that 9 hours of sleep would be enough. One of my favorite CFS quotes is from a patient interviewed for Katrina Berne's wonderful book, Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses. He said, "I used to wake up looking forward to a new day. Now I wake up and think, 'Shit, it's morning.'" This is a rather dismal view from someone like me who is usually such a sunny optimist, but some days with CFIDS are just like that.

I haven't done anything too exerting lately; in fact, I just had that wonderful, relaxing weekend. It might be my son's recent strep throat infection. I've noticed that if one of my kids gets sick, I rarely catch what they have, but just the presence of the infection can make my immune system go crazy (crazier than usual). There I go again, playing my favorite game, What Did It This Time?

I hate this feeling. It's so hard to describe to anyone who doesn't have CFS. If I just list my symptoms, it doesn't seem to add up to much - sore throat, achy legs, exhaustion - but the overall effect is paralyzing.

It's time to take my son to school for his 3 classes, and then I have a mammogram scheduled. I can't wait to get back here so I can lie down again. It's pretty sad when you've just gotten up in the morning and you're already looking forward to the evening when you can go back to bed. I just have to keep reminding myself that if I rest, I'll feel better in a day or two. Not well, but better.


Monday, March 06, 2006

Recuperation Weekend

Ah, the weekend! Not just any weekend, but a weekend at home with absolutely no schedule or obligations. It was just what we needed after last week.

We watched good movies (Wallace and Gromit and the Curse of the Were-Rabbit with the kids; Love Story of Bobby Long and Tiptoes after they went to bed). We read books (take a look at my book blog to hear about our latest favorites). The boys played together all weekend, with stuffed animals, knights & dragons, and all sorts of pretend games.

The only downside was that Craig got strep throat. We had to take him to the doctor's office on Sunday morning for a strep test and prescription. With all of the health-related challenges we face, strep is an easy one. It's easy to recognize, easy to diagnose, and easy to treat. Quite a change from the vagaries of CFIDS.

So now we start a new week. Of course, it's starting out like last week, with an unexpected challenge to deal with, but I feel better equipped to deal with these inevitable roadblocks after such a relaxing weekend. Craig should be feeling better and back to school by tomorrow. Bring it on - I'm ready.

Saturday, March 04, 2006

When Everything Seems To Go Wrong

What a week! I didn't even have time to write because I was either running around after various emergencies or lying flat, trying to recover enough to run around more. whew.

Our week started with our truck breaking down, stranding us in Connecticut. We finally got home Monday afternoon, and I looked forward to life returning to "normal" on Tuesday. Instead I spent much of Tuesday and Wednesday taking my older son, Jamie, to various medical facilities. He was still having headaches a week after a fall while snowboarding. His doctor thought he had a mild concussion and sent him for a CAT scan and a follow-up visit with a neurologist. Thankfully, he seems fully recovered now and got the all-clear from both the scan and the neurologist.

Tuesday afternoon my husband found out he had to make an urgent trip to Texas for work, so he left on Wednesday and was away until 2 am Friday. Although he tries not to travel too often, some travel is a part of his job. I always worry about how I'll manage while he's gone and what will happen if I crash badly. He does so much around here to take care of us.

I thought things had pretty much returned to normal on Thursday when I ran into some unexpected battles with Jamie's school. We've had to fight every step of the way this year for appropriate accommodations so he can manage school with CFIDS. We had recently discovered some cognitive dysfunctions particular to math computation and wanted to explain them to his math teacher. It should have been a simple request, but it became much more complicated, tangled in miscommunications and misunderstandings. All of this culminated in a very upsetting phone conversation on Thursday with the 6th grade advisor. I was shaking and sobbing by the time I got off the phone, all the time painfully aware of the effect of stress on my own physical well-being.

Despite all of these issues and urgencies, there were times during this week when I felt very grateful for what we have. CFIDS has done this to me - made me so much more aware of what we have to be thankful for. Incredibly, it often seems that the worse things get, the more I realize that there are people far worse off than us.

During one of my "hurry up and rest" periods, I read a magazine article about a child born with a genetic defect that resulted in a wide array of medical problems. He couldn't walk until age 3 and at age 4 still can't talk. The article highlighted his and his parents' strengths and bravery. Reading about their struggles and the dismal prognosis for this boy's future made me profoundly grateful for our own boys' relative health. I know that sounds crazy when we're dealing every day with such a debilitating illness, but we are very fortunate. Neither Jamie nor I is as severely disabled as so many others I've read about or talked to. There's a fairly good chance that Jamie will eventually recover or improve quite a bit (the CFIDS prognosis is much more positive for children than for adults). Both of our boys are smart, caring, kind children, and we remain hopeful about their futures.

I was similarly moved by a newspaper article about the opening of a local hospice for dying children. I can't imagine dealing with a child with a terminal illness. Thank goodness Jamie's head injury turned out to be mild.

I was also reminded of something that happened during our visit to Connecticut last weekend that was temporarily forgotten in this week's turmoil. Our boys, ages 8 and 11, had gone to their 4-year old cousin's birthday party, attended by a crowd of preschoolers. By the end of the party, several other parents had come up to my husband and I and told us what wonderful, caring children we had. They had remarked on how our older boys had played with and helped all the younger kids with patience and kindness. As far as we're concerned, this is the greatest compliment anyone could pay to our children. It's what we've always dreamed of and strived for - that our boys would grow up to be kind and caring people. In some ways, CFIDS has probably helped in this regard. I think both of our boys have a much greater empathy and compassion for others because of their own struggles and their desire to help care for me when I'm ill.

We are very fortunate. I just need to try to remember this when everything seems to be going wrong.