We Are Everywhere

There are good reasons why Chronic Fatigue Syndrome and Fibromyalgia are known as Invisible Illnesses. First, there's the fact that most of us look "normal" to people who don't know us. Strangers or casual acquaintances who see us out have no idea how much we're suffering or what a huge effort it's taking for us just to be present. Second, stuck in our houses for most of our lives, we feel isolated and invisible to the world outside.

I was feeling my invisibility acutely yesterday at Craig's soccer game. I'm still very badly crashed, but I dragged myself to the game and was sitting there, wrapped in a blanket and huddled in my beach chair (close to the ground to minimize the effects of OI), aching all over and probably feeling a little sorry for myself. All around me, I could see and hear the other parents, standing on the sidelines, talking animatedly to each other. It was obvious they all knew each other from school functions and other community activities that I usually miss out on.

Then, I struck up a conversation with the mom sitting next to me, wrapped in her own blanket and also sitting in a beach chair. Her older daughter had gone to middle school with Jamie, and her youngest daughter was on the opposing soccer team. Jamie was sitting next to me, also aching, in his own beach chair, and this mom asked him if he played soccer for his school, too. Jamie said to her, "No, I, uh, have some medical problems, so I don't have the stamina to play for the school team."

The other mom was immediately interested (unusual in itself) and asked what kind of medical problems. I explained that Jamie and Craig and I all have an immune system disorder (standard explanation), and she asked, "Which immune system disorder?" I didn't even finish getting the words "Chronic Fatigue Syndrome" out of my mouth before she excitedly replied, "I have fibromyalgia! And my middle daughter also has fibromyalgia plus lupus." And just like that, a bond was formed - we had each found someone else who gets it!

She and I talked non-stop through the rest of the game, practically finishing each other's sentences...

She: Did you hear the news about the new virus last week?
Me: Yes! wasn't that great?

She: There's this medication that works well for any immune system disorders. It's called low-dose naltrexone...
Me: I take low-dose naltrexone!

She: My daughter's knees have been really hurting lately. I'm worried she might have Lyme.
Jamie: I've had Lyme twice.
Me: I got Lyme last summer, and I'm still being treated for it.

She: Has this fall been bad for you? I've had terrible aches...
Jamie and I together: Yes! Terrible aches!

Immediately, she and I both knew we had found someone who understood, someone for whom we were not invisible, someone who really "got it." It reminded me of the way it feels when I discover a new friend through blogs or other communities on the internet who instantly understands me because he or she is living the very same life.

Something similar happened to me in June, when we attended a graduation party for a close family friend and two - yes, two - other moms there sought me out and asked me all about CFS because both of their daughters had undiagnosed mystery illnesses (both quite likely CFS).

We are not nearly as alone as we feel. It is estimated that there are over a million adults with CFS in the US (plus unknown numbers of kids and teens) and many more worldwide. I'm no expert on fibromyalgia, but I think the estimate for that illness is several million in the US alone. Next time you're out, look around. Chances are pretty good that someone else you see has been affected by CFS or FM, either in themselves or in a friend or family member.

We are your neighbors and friends. We are the parents of your kids' friends. We are the people you see in the doctor's office or (more rarely) in the grocery store. We are everywhere.

We are not alone, and we are not invisible.

New York Times Article

Remember I recently posted about author Anne Ursu? Well, she was quoted in a New York Times article yesterday about the new CFS research. It's a great article, except for the inane comments from Reeves at the CDC - makes me want to reach through the computer and strangle him!

Jamie went back to school this morning, in time for his PSAT - hurray! Craig was starting to feel bad last night, but then I discovered he skipped all his meds yesterday (I slept in because I was so sick). Hopefully, he'll be OK now. I'm a little better - still very low stamina but anything is better than yesterday.

Another One Bites the Dust

Things are looking pretty grim at our house this week.

Jamie was severely crashed all weekend and is still home from school. He's spent 4 full days lying on the couch reading. Thank goodness for reading! I think he's on his fourth book since Saturday.

I felt much better Saturday, but it only lasted about 36 hours, then I went into yet another bad crash. This is now 4 weeks in a row for me. I'm grateful that I, so I''ve had a few breaks on the weekends, but I'm getting pretty sick of this. I woke up this morning worse than ever, with my throat so sore I could barely speak and every inch of my body aching horribly. Jamie's on the couch, so I've set myself up lying across a couple of beanbag chairs on the floor. I hope Jamie gets better soon - he has his PSAT exam tomorrow and a full-day field trip to the Renaissance Faire on Thursday.

After all the excitement over last week's CFS news, I allowed myself to daydream a little this weekend...what would happen if this new finding actually leads to a cure? But today I feel like it's back to reality.

Quote It Saturday 10/10

I skipped last week because we were out of town but wanted to get back to my new weekend feature, Quote It Saturdays, started by fellow book blogger, That Chick That Reads. I enjoy posting this weekly feature on my book blog and thought I'd try it on the CFS blog as well, with book quotes that especially spoke to me as someone living with chronic illness.

This week's quote is from a book of essays, Above Us Only Sky, by one of my favorite writers, Marion Winik:

Instead of burning my candle at both ends, I learned to light it only for special occasions.

Marion was writing about plain-old modern life, with all its crazy stresses, but doesn't this perfectly express how we've had to change our lives for CFS?

Hope you're enjoying a relaxing weekend!

Big News in the CFS World

You've probably already heard about this, but just in case...

Yesterday, the results of a recent CFS study were announced that found a certain virus in 67% of 101 CFS patients tested (and less than 4% of controls). This is good news and could potentially lead to some breakthroughs in diagnosis and treatment.

Whether this research leads to anything useful or not, though, the announcement itself was very beneficial - it was covered by all the major news media - big-time coverage proclaiming that CFS has an infectious link and is a real, serious disease! It was covered by NPR (twice - on All Things Considered last night and again on Morning Edition today), by the New York Times, Nature magazine, Science magazine, and many more. Here's the CFIDS Association's take on it. We can use all the good, validating PR we can get!

Coincidentally, the CFIDS Association kicked off a new PR campaign this week called Solve CFS, with some very cool features, including a campaign to raise $1 million for CFS research by 12/21/09. Check out the moving story posted by fellow blogger Jennie Spotilla in this month's CFIDS Chronicle.

I think we're making progress!

Flat Again

Well, I did make it to the beach this weekend, and we had a wonderful, relaxing time. The condo our neighbors loaned to us was perfect - we wanted to move in! And for the first time in weeks, I was able to walk, through the quiet beach town and along the shore. I love the ocean.

But now, here I am, flat on my back again, worse than I was all last week. I had about 3 good days then woke up this morning feeling awful again. I burst into tears several times today - not because I was depressed or melting down but just because everything hurt so much. My throat feels like it's on fire, and every inch of my body aches. I think I may have a fever, too, because Ken came home and closed the sliding glass door in the kitchen, and I said, "Keep it open - it's so hot in here!" He and the boys looked at me like I was insane and said, "We're freezing. It's only 60 degrees out."

A crash this sudden and severe can only mean another viral trigger. The boys say that everyone at school is sick. And Jamie is feeling crummy tonight, too. In fact, I need to turn my laptop over to him so he can struggle through a little homework; he's too wiped out to sit at the desktop computer. I shouldn't be typing anyway - just wanted a little company. This looks like it could be another rough week.

Swine Flu Advice for People with CFS or FM

Came across an excellent article by Dr. Lapp (one of the world's foremost experts on CFS) regarding swine flu advice for people with CFS (aka H1N1).

This pretty much echoes my own approach and what our doctors have supported here. I would add to Dr. Lapp's advice that it makes sense for non-CFS sufferers in the household to get flu shots, just to avoid bringing the virus into the home (we find that even though we don't often catch viruses, being exposed can trigger a crash from the over-stimulated immune system response - probably what's going on with me this week).

I'm still feeling awful, but Jamie went back to school today. I had a little mental breakdown last night sobbing on the couch (sometimes you just have to, you know?), but my wonderful husband talked me down and cheered me up. Trying to rest today so I won't be totally flat for our little getaway tomorrow.

School = Viruses

Too sick to write much today. I've been badly crashed all week - sore throat, severe aches, the works. Craig was home sick on Tuesday (thank goodness he bounces back so fast!), and Jamie hit the wall last night and is home today. When all three of us crash at the same time (and I haven't been very active at all), it usually means there's some sort of viral trigger lurking around. The boys have been telling me that LOTS of kids at school are sick. Lots of kids absent but, even worse, lots of kids coming to school sneezing and coughing. Haven't their parents been reading the news this season??

I hope Jamie and I recover in time for the weekend. Yesterday was Ken and my 20th anniversary, and we're planning to go to the beach this weekend for a brief get-away. Gramie and Pop Pop are coming to stay with the kids, and our wonderful neighbors are lending us their condo in Stone Harbor, NJ. We so rarely get any time alone together...I really hope I'm not crashed for it!

Great Books From a CFS Author

I just reviewed a wonderful trilogy for middle-grade and teen readers at my Great Books for Kids and Teens blog, and I wanted to share with you the author's convoluted history with CFS.

Anne Ursu is the author of The Cronus Chronicles, an exciting and suspenseful series about a couple of ordinary thirteen-year old cousins who end up battling real-life Greek gods. Anne's writing is clever and imaginative, with a nice dose of humor, and I highly recommend her books to any pre-teen and teen readers (and grown-ups, too!).

I first heard of Anne several years ago when I came across a newspaper story when the first book of the trilogy, The Shadow Thieves, was released; the story mentioned that she had CFS. I e-mailed Anne to ask for a review copy of her book and to share my own CFS story. In a strange twist of fate, Anne found my blog and e-mailed me recently, not realizing I was the same person who had contacted her years before.

Anne's CFS story is a fascinating one. When I first contacted her, she had had the relapsing-remitting type of CFS for many years but considered herself lucky that it was relatively mild. She had long periods of good health in between crashes. By the time Anne e-mailed me earlier this year, she considered herself recovered from CFS, as she hadn't had a crash episode in a long time, but her husband had recently gotten mono and developed post-viral CFS. Today, her husband is undergoing IV anti-viral therapy and seeing some improvement. Anne still does not have the classic immune-dysfunction symptoms of CFS, but she has developed fairly severe Orthostatic Intolerance and is trying various treatments for that.

Now, here's the really cool part...Anne worked CFS into the plot of The Shadow Thieves (I told you she was clever!). The book opens with a strange illness affecting young teens, an illness that makes them feel so exhausted and sick that they can barely get out of bed. Sound familiar? Cousins Charlotte and Zee are determined to find out what is making their friends sick and set off on a quest which leads them to the Underworld. They battle against Greek gods in the Underworld and eventually make their friends well again...too bad it isn't that easy in real life, huh? Jamie and I read The Shadow Thieves several years ago when we were both much sicker with CFS, and we loved seeing this illness get vanquished by the book's hero and heroine!

In addition to The Cronus Chronicles, Anne has also written two grown-up novels, Spilling Clarence and The Disapparation of James. I haven't read the first, but I loved The Disapparation of James and passed it along to friends and family who also enjoyed it. Check out Anne's website for more information on her books.

NOTE: Another excellent novel by an author with CFS is The State of ME by Nasim Marie Jafry - the novel is about a woman with CFS, and I thoroughly enjoyed it.

Powerful CFS Stories

I had another post planned for today, but I decided to put it off when I visited the Living Chronically blog and watched two amazing videos posted there. Since I don't know how to upload video to my blog (I could probably just click on that video button and figure it out, but I'm not well enough to learn something new today), I thought I'd post a couple of links to the Living Chronically posts.

The first is a powerful video story created by Laurel, a woman with CFS who is bed-ridden, to show at the recent CFSAC meeting. I hope the committee members were as moved as I was by her story; I was in tears. Laurel's story reminds me of a wonderful book, Encounters with the Invisible, by Dorothy Wall, a writer who was also bed-ridden with CFS (see book link below).

The second video is from a segment on CFS on Good Morning, America last week. It's a very good summary of CFS for the general public. Interestingly, though she doesn't mention this at all during her interview, Dr. Donnica Moore has a son with CFS. I corresponded with her a few years ago, and we traded stories. Her son and Jamie are the same age, both soccer players, and both hit with CFS at about the same time (I think Jamie's started a little earlier). Since then, she's become heavily involved with the CFIDS Association of America, and her son, Brian Bernard, is one of the people featured in The Faces of CFS photo exhibit that's touring the U.S. I've heard that he's doing a bit better these days, after an underlying Lyme infection was diagnosed and treated, though I haven't spoken to Donnica personally in awhile. She did a great job in the Good Morning, America segment.

Maybe we're finally making some progress in getting the word out about CFS - thank you to both Laurel and Dr. Moore for their excellent contributions.

Quote It Saturday 9/26

I decided to steal a feature from my book blog for my CFS blog. Another book blogger, That Chick That Reads, recently started Quote It Saturdays, where you share a favorite quote from a book. I keep a journal of favorite quotes, so I've been enjoying this new feature, but I realized that some of the quotes I write down are specifically related (at least in my mind) to the unique challenges of living with a chronic illness. So, I thought I'd share those quotes here.

The first one is from a wonderful memoir I recently read. In this quote, the author was actually referring to a break-up with a long-time boyfriend, but I think this quote perfectly captures the key to surviving any major life challenge, including chronic illness. Here, her friend is comforting her:

Then, paraphrasing Swedenborg, she said, "There is nothing that happens out of which good cannot occur." I stood beside her car in the summer sun. Some lessons take their time to seep in, but this one struck suddenly and fully with the force of a revelation: what mattered was not what had gone wrong in my life, or even how horribly wrong it had gone, but that something had delivered me to a new shore, and now I had a choice about whether I would embrace the new land or stay right where I was, resenting the ferry that had carried me.

- Building a Home with My Husband by Rachel Simon

Hope you're enjoying a great weekend!

Is It Friday Yet?

Only Tuesday? Really? Whew, I'm pooped. Ken left at 5 am Monday morning for a week in Texas, so I'm on my own this week...and it's a busy week.

The toughest part is getting both boys to school on time. Ken normally handles the ultra-early high school run, so I'm having to get up at 6:30 am this week. I'm turning the light off at 9:30 each night, but I'm still worn out by the time I get the boys to school! Lots of stuff going on in the evenings this week, too. Although Jamie skipped soccer practice tonight because he's worn out, too.

Ironically, after posting last week about treating sleep dysfunction, Jamie's struggling with his sleep. It's possible that his dose of nortriptyline isn't enough any more (he's grown so much in the past 2 years!), so his doctor conferred with Dr. Rowe at Johns-Hopkins and said he can try trazodone (which works for me), if he needs to. We'll see. First, we're trying taking the nortriptyline earlier in the evening and moving all his Florinef to the morning (according to the doctor, it can be stimulating). I hope he's able to sleep better tonight.

Meanwhile, after the evening rush hour - picking up kids, dinner, dishes, washing out Gatorade bottles, getting lunches ready for tomorrow - I'm feeling a bit of the blues creeping in, which I think is just a sign that I'm worn out. I need to tread carefully! I really hope to make it to my book group meeting tomorrow night, so I plan to take it easy during the day.

Onward...

Treating ME/CFS Sleep Dysfunction

March 20203 NOTE: I have recently posted an updated, thorough article, Correcting Sleep Dysfunction in ME/CFS and Long-COVID, that is written for patients but also perfect for sharing with doctors (it includes scientific references at the bottom). It is more complete, though this post here is still additive; it explains our own experiences in finding just the right treatments for my son and I.

I'm doing much better this week - my two-week long crash seems to have finally ended - but last night I had the worst night's sleep I've had in years! No idea what went wrong - I took all the same bedtime meds I take every night - but I was up about 8 times during the night to go to the bathroom. As my doctor once told me, "You're not waking from a sound sleep because you have to go to the bathroom; you're going to the bathroom because you're not sleeping soundly." So, this seemed like a good time to write about the sleep dysfunction that plagues just about everyone with CFS.

The most common question I get asked is how to treat sleep problems. I've explained CFS's sleep dysfunction and linked to articles on treatment in dozens of e-mails, so I figured the topic deserves a blog post. I'm certainly no expert, but I've learned a lot in my 7 years with CFS and my current treatment plan provides me with natural-feeling, sound, refreshing sleep about 90% of the time (last night was an unusual occurrence).

After a year of searching for answers when I first became sick, I finally stumbled onto the doctor I see now. She's a local family doctor, but she has several other CFS patients and recognized it in me almost immediately when I showed her my year's worth of charts and graphs! Once I learned a bit about CFS and saw that it fit my symptoms perfectly and was, in fact, a real diagnosis, I went back to see her. She said, "Now that you feel comfortable accepting CFS as your diagnosis, are you ready to try some treatments?" Was I ever! She told me, "The first step is to treat the sleep dysfunction. Correcting that and getting you good quality sleep will improve all of your other symptoms."

She was absolutely right! Getting good quality sleep reduces pain, improves immune function, often vastly improves cognitive functioning, and, of course, reduces fatigue. The key is to correct the root cause of the sleep problems, not just mask them with sedatives.

There are many kinds of sleep dysfunction in CFS patients, but the most common is light sleep, where you never hit the deep stages of sleep (Stage 3 & 4) required for restorative sleep. The reason behind this is simple. The endocrine system (which produces hormones) is dysfunctional in people with CFS. In a healthy person, the body naturally produces more dopamine and serotonin in the evening, as it gets darker. These two hormones are released in the brain, causing the normal progression of all of the stages of sleep, including deep sleep. Without enough of these hormones, the brain stays in the light stages of sleep.

So, the key is to increase levels of serotonin and dopamine before bedtime. There are many medications that do this. I know that some people don't like taking "sleeping pills," but these are not sedatives; they are medications that merely help to mimic what a healthy body would naturally do. The medications that do this are formally classified as anti-depressants, but don't let that deter you. When used in small doses, they lose their anti-depressant properties and help to treat sleep dysfunction by increasing serotonin and dopamine.

There are two articles that explain all of this better than I can. One is from a 2001 issue of the CFIDS Chronicle and the other was written by Dr. Bell.

The best approach is to share these two articles with your doctor and use them as a guideline for deciding which med(s) to try. The chart attached to the CFIDS Chronicle article is particularly helpful. It usually takes some trial and error, and everyone is different. Start with very low doses and slowly work up. If any medication has side effects that you don't like, try another.

In my case, my doctor first tried amitriptyline. I started at the lowest dose (10 mg), but it left me feeling groggy in the morning, so we moved on. Next I tried 50 mg of trazodone (Desyrel), and that worked very well for me for awhile. I was thrilled to be sleeping again, soundly through the night, and waking up feeling rested and refreshed. My doctor was right - it made a big difference.

After awhile, the trazodone didn't seem to be working as well, so we increased my dose to 100 mg. That worked well for about a year. When that dose started to become less effective, I consulted with Dr. Bell who recommended adding a different medication rather than increasing the dose further. He and my doctor advised trying nortriptyline (Pamelor) which is available as a liquid so that the dose can be adjusted by minute amounts. I have stayed on this combination of trazodone and nortriptyline for several years now, and it still works well (last night not withstanding!). I can adjust the nortriptyline dose if I need to, and I have found that small changes make a big difference. Most nights, my sleep feels normal, I only wake up once during the night to use the bathroom (if at all), and I wake feeling like I got a good night's sleep.

My older son, Jamie, also takes nortriptyline (on its own) for CFS sleep dysfunction. We have each found the right medication and dose for our individual needs.

In an odd coincidence, Jamie stayed after school today to work on his science fair project. Guess what topic his group chose? The science of sleep and the effects of sleep deprivation on cognitive function! Isn't that the perfect topic for a teen with CFS? He has assured me that he will not be experimenting on himself! A couple of his night-owl classmates have agreed to be the guinea pigs.

I firmly believe that correcting my sleep dysfunction is a large part of the reason that I function as well as I do. It really makes a difference.

I hope that answers some questions and provides some guidance. If you're still struggling with sleep problems, I strongly urge you to look into treatment. My doctor was right - good sleep really does make all other symptoms better.

Pleasant dreams!

UPDATE 10/22/09:
Jamie's sleep was getting worse recently, and his doctor didn't want to go any higher on his dose of nortriptyline, so we added trazodone for him, too. The combination is working well for him, as it does for me, and he's now sleeping through the night again.

UPDATE 7/24/13:
Both of us are still sleeping well on the combination of trazodone and nortriptyline. For me, this is now over 10 years on these meds, at the same doses for the past 5 years or so, and still working very effectively. I do have a prescription for Ambien, but I only need to take it when I travel (and then only a half of a 5 mg pill).

UPDATE 7/1/22:

All of the above is still true! The same treatments at the same doses still work very well for both my son and I.

UPDATE 9/18/19:
I wrote an article on Treating Sleep Problems in Chronic Fatigue Syndrome for ProHealth that covers everything in this blog post, plus more! Check it out for the latest research and advice on correcting sleep dysfunction in ME/CFS.

Down for the Count

Still struggling with the same crash. Two weeks now - that's pretty unusual for me and hopefully not the start of a trend.

My Mom came to visit for a few days this week. Even though I wasn't feeling well, I always enjoy her company, and it certainly helped to keep my mood up to have her here. I somehow managed dinner out with her and two friends, plus our book group. A very enjoyable evening, though I'm sure it didn't help my crash!

After dropping Mom off at the train station this morning, I spent the day on the couch under the quilt. Friday night now, with nothing ahead but some DVDs and lots of rest this weekend. You know how it goes - nothing to do but rest and wait...

Party Girl

Well, I'm finally feeling better again. That was a long, long week. I'm guessing that maybe some back-t0-school germs triggered my crash because it was far too severe and long-lasting to be caused by just getting up a little earlier or doing too much. I was still very sick all during our long weekend.

Despite my crash, we went to several social gatherings this weekend. I spent my days resting, then tried to tank up on salt, fluids, and supplements so I could manage to make it through our evenings with friends. Sunday night we went to a cook-out at the home of one of our boys' best friends. I felt my illness and otherness most acutely that evening.

In my younger days (pre-CFS and pre-kids), I was a party girl. I was pretty wild in high school and college, then I lived in New Orleans for several years which is, of course, party central. I have always been outgoing and extroverted. I love being with friends and meeting new people, laughing and talking and staying up late.

I think that's one of the cruelest things about CFIDS...that social interaction of any kind is so completely exhausting. Sunday evening - since I was already feeling bad to begin with - I really hit bottom. It was a fun party. We get along well with the boy's parents who were hosting the party, and I really enjoyed meeting all of their friends and neighbors. But I was very much aware of my illness and my different-ness all evening.

When we arrived, everyone was gathered in the kitchen, as they always do at parties. I knew I couldn't stay on my feet, so I sought out the only chairs nearby, in the dining room, but then I was out there by myself, with everyone else chatting while standing around in the kitchen. I got my glass of ice water (whoopee!) and went to the back deck to find Ken. It was just a few men out there, but at least I could sit and still be a part of the conversation. I settled myself onto the deck for the duration of the evening. No mingling for me, though eventually other people came outside and I did get to chat a bit.

I felt sicker and sicker as the evening wore on, but Ken and the boys were having fun, and I was enjoying the company. Dinner helped my energy a little, but then my stomach bloated and cramped - must have been some hidden dairy somewhere that I didn't notice. When we finally left at about 9:30, I had a headache so severe that I felt nauseous from the pain. I somehow managed to walk home and just collapsed into bed. I felt so bad and the headache was so awful that I couldn't fall asleep, until I finally took an Ambien. Monday, I woke with a severe sore throat, achy and exhausted, and had to spend the day resting. It seems so cruel and unfair a price to pay for just sitting around and talking to people.

I don't mean to complain. I'm grateful I was able to go at all (though, clearly, I should have stayed home!) It's just that the whole experience left me feeling so isolated and out of place, and I knew that all of you out there in the CFS blogging world would understand. It just seems so unfair that I can't even enjoy a glass of wine, yet I end up with a worse hang-over than I ever had in my old party days. It's as if I've lost a part of my identity.

Well, anyway, I'm grateful to be feeling OK again and am hoping for a much better week.

School Daze

I had such high hopes for this week! Craig went back to school on Monday, and Jamie had two half-days, starting Wednesday. I planned to finally start catching up on all the writing work I didn't do during our busy summer. Instead, I'm crashed for the first time in almost 2 months - probably from the early mornings that I'm not used to.

The past two days have been especially bad - sore throat, heart palpitations from OI, the works. I've had to spend my days lying on the couch - it's been a long time since that has happened! Meanwhile, the e-mails continue to pile up, unanswered, the errands are still waiting, and I'm feeling a bit panicked over having no writing projects in the pipeline (i.e. no income).

At the same time, the start of school for parents of kids with CFS means a bunch of extra to-dos - e-mails to explain CFS to new teachers, setting up meetings with guidance counselors for 504 plans, plus trying to get the kids to bed early so they won't crash.

I know from past experience that there's nothing to do but rest and wait (and try not to stress about all the undone work).

The kids are managing OK. Craig loves middle school so far - he says the days go by much faster with all the different classes. Craig is typically an early riser, but even he has had trouble with the earlier wake-ups this week. It's great that Jamie has only had two half-days because he has to get up REALLY early. Next week will be tough for all of us!

Now we have a nice 4-day weekend ahead of us to pretend that it's still summer! We have a lot of fun stuff planned with friends, so I hope I recover soon. Enjoy the weekend!

Summer Fun

There are several topics I've been wanting to blog about, but I haven't had 5 minutes to sit at the computer! No time to read blogs lately either - I'll just have to catch up when the kids go back to school next week.

My kids packed an enormous amount of fun into this last week of summer, and I am hugely grateful that they were well enough to enjoy it all!

On Monday, my friend Amy bravely accompanied 5 boys to Dorney Park, a local amusement park. They were gone from 8 am until 11 pm. I really appreciated what Amy did because a day like that is way beyond my capabilities, and the kids all had a blast riding roller coasters and water slides all day.

Jamie and Craig were a little tired on Tuesday but really not too bad, considering all they had done the day before. They took it easy most of the day, and Craig and I went to buy his school supplies.

On Wednesday, we made our annual trip to a local state park to play in the creek. Amy and her son came along, as well as another friend, Marti, and her kids, plus my boys and another friend. This to me is the quintessential summer day - we walked up the creek, swam in the pools, the boys caught crawfish, slid down a muddy bank, and (being boys) threw wet t-shirts and mud balls at each other! They had a great time, and I got to enjoy the cool creek and chat for hours with my two closest friends. We got back to the house in time for me to grab a quick nap before Craig's meet-the-teacher night.

Then, yesterday, Jamie had a belated birthday party. We had 8 boys here - I took them to the park, where they played football, soccer, and ultimate frisbee, then to the pool to cool off, then back here to the house for a sleep-over. They were up until 2:30 am (quite a feat for my boys who normally go to bed at 8:30!!), and I made a big batch of pancakes this morning.

Can you believe that two kids with CFS did all this in one week? (not to mention Mom!) I am amazed and so grateful that they can do all this now. Thank goodness for Florinef - we consider it a miracle drug here. And it's just so nice in the summer to let the kids do all this stuff without worrying about school absences and make-up work.

And guess what we're doing this weekend? NOTHING! That's why we planned the sleepover for Thursday and not Saturday - now the boys have several days to just rest and recover before school starts (Monday for Craig and Wednesday for Jamie). I'm looking forward to reading and watching DVDs this weekend!

It's been a great summer - so much better than last year (i.e. The Year of Lyme). Hope yours was as good as ours!

Back Home Aagin

We're back from our camping trip in NY. It was a hectic schedule, but we had a lot of fun. We spent the weekend at a lake with my extended family. It was, of course, tiring for me to be with a crowd of 14 people for two days, but it was good to see everyone. And it's so great to see the kids running around with their cousins, having a blast. They never wanted to leave!

Next, we went into Rochester to visit my Dad and his wife for a day. Great to see them, as always, but I was pretty sick while we were there. I must have picked up a little stomach bug (my husband and Mom, too), plus I was worn out from the big weekend. I always feel bad when I have to spend most of my visit in bed, but the extra rest revived me.

We spent our last couple of days in the Finger Lakes region, just the four of us. I had wanted to show my kids one of my favorite areas, and we all enjoyed the gorges, waterfalls, and lakes. One of my oldest and closest friends came to the campground to visit us, which was wonderful. We had hoped to escape the Delaware heat and humidity for a typical cool NY summer week, but it turned out to be their hottest and most humid week of the summer! Still, we had fun and enjoyed the trip.

Now, back to the lengthy to-do list! The kids start school in 10 days (good thing - I'm so behind with work!!). And another task just got added to my list - I discovered today that two of my medications contain lactose (lots of meds use it as filler), so I need to try to find some replacements. We also have a hectic weekend ahead, trying to trade in our old truck before Cash for Clunkers ends on Monday! Even so, it's good to be home again.

Back on Track

I started to feel more like myself again Monday morning and continued to do well today. I don't know if it was that day of rest (why did I wait so long to do that??) or if the mild crash I was having just finally ran its course. In any case, the wonderful support and advice from all of you helped very much! Everything you said was so true. I am trying to take better care of myself and not let stress get to me.

Stress and CFS have such a cyclical effect on each other; it's hard to tell sometimes which one is causing the other. When I'm crashed, I'm more prone to feel stressed and anxious - I've learned from long experience that emotions and physical symptoms are inextricably linked. There are changes in my brain chemistry when my CFS symptoms flare that lead to increased feelings of anxiety and depression.

And, of course, feeling stressed causes CFS symptoms to increase. The research on that point is very clear - those of us with CFS do not respond to stress the way healthy people do. Because of endocrine dysfunction, our bodies don't make the right hormones in the right amounts when faced with any kind of stress. And, of course, there's simply the stress of not feeling well and not being able to do what you need to do. So, CFS causes stress and stress causes CFS - it's a tough cycle to break once you get mired in it.

So, I was very relieved on Monday to feel more like myself again. The boys and I finally cleaned out their closets - productivity feels so good! We have boxes of old toys to donate to charity, Craig can now fit his shirts in his closet (what a concept - clothes in a closet!), and we also had our 1994 Pathfinder towed to the shop to be fixed in preparation for a possible Clunkers trade-in. There's nothing like finally taking care of long-overdue tasks to make you feel good!

The boys had a double sleep-over last night, so I was glad to feel well enough today to make the four boys a big breakfast and drive them to the pool. And, while they were there, I got some work done that had also sat idly last week. Now, I'm finally able to turn my attention to getting ready for our family camping trip this week. And I'm looking forward to it, too!

Feeling Blue

I have been really out of sorts this week and seem to be getting worse instead of better. I thought that maybe writing about it would help. I haven't been fully crashed but have been low on energy and motivation all week - hovering in that gray area of CFS where I don't feel good but I don't feel horrible either. But I feel so down and tired all the time. I'm having trouble falling asleep and I wake up still feeling tired (I know, typical for CFS but usually my medication makes my sleep feel normal). I somehow push myself to get a few things done during the morning, waiting until it's nap time so I can get into bed again. I feel groggy and tired in the afternoon, somehow manage to get dinner ready, then often feel a little better in the evening...then the whole thing starts all over again. Over all of this is a feeling of vague dissatisfaction. I just feel down and worn out. I just want to lie in bed with my book and not face all the stuff I should be doing.

I have three main theories (I always have theories)....

First, as my husband put it matter-of-factly this morning, "It's CFIDS." Maybe my CFS is acting up, and I'm just not resting enough to get over it. That's a definite possibility.

Second, I am definitely feeling a bit overwhelmed with too much to do and no energy. This is a common problem for me. At the back of my mind,in a voice I'm trying not to listen to, I think I've committed to too much, especially with my writing. But it's all stuff I WANT to do, so I'm not admitting that it's just too much.

Third, I almost certainly am feeling some anxiety about the coming week. We're heading up to NY to meet my family for a camping weekend. The preparation for this kind of a trip is always enough to potentially cause a crash, so that's part of it. But I'm also worried about the trip itself. I love my family and enjoy being with them, but - as I'm sure you all understand - spending several days with other people is always exhausting, no matter how much you love them. And my family is not exactly the easy-going type. They like to pack as much fun into every day as they possibly can. So, it promises to be a very energetic weekend, with lots of activity, complicated meal prep, noise, late nights, etc. No one can make me laugh like my family and I'm sure I'll have fun, but I know it will be challenging to keep up with them. Also, we'll be close to my hometown of Rochester, where dozens of other-side-of-the-family members live, so I feel pressure to try to fit in visits with as many of them as I can, too...or, at the very least, with my dad and my grandmother.

So, in all likelihood, I'm feeling so run-down from a combination of all three things. Ken says I should just take a day off, and it seems like that's what I'm doing today - not by plan but just because I can't find the energy to do much of anything! I can hardly keep my eyes open, so I'm going to grab a quick lunch and go take my nap. Thanks for listening.

Update on Genetic Study

Just a quick update to let you know that the CFS genetic study that I wrote about earlier this week is still actively recruiting participants and all of the information I posted earlier is correct. One person had trouble when she called, but I have double-checked with the research assistant, and she has no idea why that was. In any case, the phone number and e-mail posted earlier are correct, and they need more participants. If you have any trouble with that contact information, you can also try e-mailing Caitlin Smith at cksmith@uic.edu. She's the research assistant for the study and also the person who answers the phone.

Kids' CFS Update

The boys and I spent this morning at the pediatrician's office for their annual check-ups. As always, I was impressed by and hugely grateful for their wonderful doctor, who has helped them immensely and spent a lot of time learning about CFS since they were both diagnosed. She's kind of becoming our local pediatric expert on CFS - I've referred several parents to her.

Craig (age 11) is doing great, as I've mentioned here before. His CFS symptoms began in 1st grade - mainly intermittent back pain, chest pain, headaches, sore throats, and exhaustion - but have always been much milder than either mine or Jamie's. At his worst (before treatment), Craig missed 45 days of school in 3rd grade. At that point, we decided it was time to officially diagnose him and start treatment.

He now takes o.15 mg Florinef (one and half tablets a day) for Orthostatic Intolerance (OI), and is completely symptom-free about 90% of the time! It's really amazing. He also takes potassium supplements, salt tablets, and daily Gatorade to help the Florinef work. This past school year, Craig missed only 12 days!! That's extraordinary for a kid with CFS, and we're so grateful. He also had trouble with recurrent sinus infections (6-7 per year) - probably made worse by CFS - but he had his adenoids out 2 years ago and has had only 1 sinus infection since then, despite having severe allergies in spring and fall. He's incredibly healthy now and able to do just about anything he wants.

Jamie's (age 15) CFS has always been more severe. His began after a bout of Lyme disease in 3rd grade, then he had a full year with no symptoms at all, and his symptoms returned and became much more severe in 5th grade. Jamie missed 60 days of school that year. The following year - his first at middle school - Jamie was so ill that we didn't even count days' absent. The school counselor got him a district attendance waiver, waived all electives, and arranged for a home tutor for two classes. For the other 3 classes, I drove him back and forth to school whenever he was up to attending; he made it to those classes about 60-70% of the time.

Finally, at the end of sixth grade, after seeing Dr. Bell and consulting with Dr. Rowe, we learned all about OI and started Jamie on Florinef. There was no effect at first, until he got up to a dose of 0.2 mg per day. Then, it was like someone had flipped a switch - he went back to school full-time, rejoined band, and was even back to playing soccer.

At the end of 7th grade, Jamie got Lyme disease again (fortunately again caught immediately). After treatment, his Lyme symptoms were gone but his stamina was a bit lower. Lyme is a known trigger for CFS, so this makes sense. He was treated again for Lyme, just to be sure it was all gone, with no effect. In the two years' since then, Jamie has been able to continue full-time school, but he has plenty of down days, averaging about 25-30 missed school days a year and feeling severely crashed anywhere from 1 to 5 days each month. Last summer, Dr. Rowe advised our doctor to increase Jamie's Florinef dose to 0.3 mg, and that helped a bit.

So, that's where Jamie is now. We talked to his doctor today about various possibilities to increase his stamina. He's been coping well during the summer, but it's difficult during the school year, especially to make up missed work after a week or more out (he's in high school now). His pediatrician is going to consult with Dr. Rowe again about 3 possible approaches: increase Florinef dose again, add Midodrine (another common OI treatment), or try a stimulating medication during the day (our doctor said she's used Ritalin-type drugs for some kids/teens with CFS with success - studies show these drugs increase blood flow to the brain, so they should help with CFS/OI). So, we'll see.

That's about it, I guess. I thought some of you might be interested in the history and status of our boys' CFS. We are enormously grateful that they are both functioning as well as they are - we know we are very fortunate, compared to other families with CFS. Let me know if you have any other questions about pediatric CFS.

CFS Genetic Study

My older son, Jamie, and I are participating in a new research study that aims to identify some of the genetic markers associated with CFS. This is exciting stuff! It's a large-scale study through University of Illinois at Chicago that will look at genetic markers in people with CFS related to EBV and HHV-6 infections. Best of all, anyone over the age of 13 can participate from anywhere in the U.S.

All that's required is filling out some forms, taking part in a short phone interview, and submitting blood for analysis. You don't even need to leave your house - they'll send a visiting nurse to take the blood sample. And you'll be paid a small stipend for your participation.

It's a great opportunity to help move CFS research along - real, solid research based in hard science that could help lead to tests or treatments. I like to participate in studies whenever I can. It helps to remove that helpless feeling and makes me feel like I can make a difference.

If you're interested in joining Jamie and I in this study, contact Dr. Taylor at UIC at mono@uic.edu or call the research assistant at 312-339-5257.

P.S. In contrast, another totally useless CFS study was published recently. The result? Supposedly, kids with CFS have parents who have higher academic expectations than other kids; therefore, high parental expectations put a child at greater risk for CFS. HUH?? There were only about a dozen kids in the study. My husband was ticked off when he heard about this one. He said, "What kind of scientist doesn't understand that finding a correlation between two things doesn't necessarily indicate a cause and effect?" What a waste of our limited CFS research money.

Wonderful Weekend

The boys and I made it back home by 1 pm on Friday, just before a huge storm hit (good timing!). I actually enjoyed the storm because it felt so good to have all four of us back together in our cozy house (Ken decided to work from home Friday). The boys had been up past midnight two nights in a row and were pretty worn out. Craig napped in the car and was fine by the time we got home. Jamie couldn't put his book down (as usual!) and was totally wiped out Friday afternoon, so he just relaxed on the couch under his quilt and was much better by Saturday.

I made a conscious effort to spend some fun time with the kids this weekend and not focus too much on the to-do list, and we had a really nice weekend together - lots of games, great meals, DVDs, capped off by mini golf Sunday evening and ice cream at our amazing local dairy. Very nice and rejuvenating.

But now it's Monday morning - back to work! I'm helping the boys clear out their rooms a bit (I live in a house filled with packrats). We're starting on the closets this morning - yikes!

Where Did the Week Go?

It's already time for me to head back to Connecticut to pick up the boys.

I've enjoyed my quiet solitude, but it will be nice to have them back home. Then again, it's been a full week since our cleaning service was here, and the house is still clean! Just kidding - I'll take their mess and noise along with their sweet company.

I had a wonderfully social day yesterday - a nice change for me. I met my two closest friends in the morning for a walk at the nature center. It was hot and sticky, but it was so much fun to be able to join them again on our weekly walk! It's been months since I was able to do that. I came home and finished a writing assignment, then met them again for a nice lunch. We never run out of things to talk about!

I'm a little run-down today from my walk yesterday (a full hour!), but I'm still optimistic that I'll be able to make the drive to Connecticut later today, after my nap. Several times in past years, I was too sick, and Ken had to take time off from work instead. He told me last night before bed, "Just call me in the morning if you don't feel well enough." Hopefully, I won't need to. Besides, I have plans to meet an old college friend for dinner in CT tonight.

After an early lunch and a (hopefully) refreshing nap, I'll load up the car with my snacks and audio books and head out. The boys and I will drive back home tomorrow morning. Then, it's back to normal life for a couple weeks, until our next trip!

The Sound of Silence

What's that sound? Ah, silence! The boys are off on their grandparents' sailboat with their cousin on the annual Grandkids' Cruise this week, and Ken and I have the house all to ourselves.

Of course, you know how much I love my sons, and we've been having a lot of fun together this summer...but I was really ready for this week off! I am responsible only for myself, the house is quiet (and clean), there are no hordes of boys running in and out of the house, and the grocery bill was so low this weekend!

As usual, I probably have way too many things that I plan to get done, but I woke up this morning feeling pretty wiped out from a bit (and I really mean a BIT) of yard work yesterday. Fortunately, I feel a lot better after my nap, and it was nice to just be able to take it easy this morning when I needed to. I'm especially grateful for this week to myself because I wasn't able to enjoy it last summer. That week when the kids were gone was the same week that my Lyme symptoms hit hard (and before I started treatment), so I remember spending that week last summer flat on my back. This is much nicer.

So, I'm trying to catch up on some things and even plan to attempt to clean off my office desk (which looks no better than that awful picture I posted back in January!). Meanwhile, Ken and I are enjoying eating foods the kids won't touch - yesterday's meals included olives, mushrooms, and blue cheese - and watching movies and just enjoying some quiet time together. Hope you're having a good week, too!

P.S. Thanks for all the nice comments last week about my 30-day crash-free milestone - I was really touched by all the congratulations! Still going strong...

A Crash-less Month

It's been 30 days since my last crash day! I know that sounds like the start of a Catholic confession or an AA meeting, but it's actually hard evidence that I'm finally getting back to where I was a year ago, before Lyme hit.

I went to see my Lyme doctor in NJ yesterday, and he pronounced me, "About 95% of the way there." My energy level and stamina are about back to where they were before I got Lyme last June. I still have some mild knee pain occasionally, but overall, my Lyme symptoms are almost gone. Once the symptoms are completely cleared, I'll need to stay on the antibiotics for another 2-3 months, just to be sure. I definitely don't want a repeat of what happened last time, when my symptoms returned as soon as I went off the meds. Going through a 2-month herx each time I restart antibiotics has been torture.

On the home front, I'm trying hard to keep that easy-going summer attitude I talked about last week, but it's getting harder because I'm behind in everything! I'm just not getting anything done (as you can probably tell by my less-frequent blog posts). I'm sleeping later, then making breakfast for the boys and doing dishes, a little laundry, check e-mail, maybe run an errand, and before I know it, it's time to make lunch and do more dishes! After my nap, the boys like to go to the pool for an hour, then it's time to make dinner. I enjoy the extra reading time by the pool, but my to-do list keeps growing!

I'll have a chance to catch up a bit next week - the boys will be sailing with their grandparents all week. Maybe I can finally get a little work done! At least, I feel well enough to handle all this activity - I'm very grateful for that.

Summer Living

Ah, I just love the slow pace of summer! Now that I've finally caught up on laundry, unpacking, etc. from vacation, we've settled into the easy routines of summer.

Summer vacation is a nice break for any kid in school, but for kids with CFS, it is a blissful relief. Jamie, whose CFS is much worse than Craig's, especially benefits from summertime. I've watched him this past week, and it's such a relief not to have to worry constantly about how he's feeling and whether he'll be able to go to school. When he's feeling good, Jamie runs around and plays with his friends, swims, hikes, whatever he feels like. If it was too much and he crashes the next day, he hangs out on the couch with a good book and is perfectly content. No pressure, no worries, no make-up work.

Both boys are staying up later (that means 9 pm for our CFS kids!!), and Craig still wakes pretty early, but Jamie can sleep in a bit (since he's in high school, his day begins at 6:20 am on school days). And I can sleep past 7 am! I don't even have to wear a watch. There are no schedules, no kids to meet at the bus stop, no rushes to school when Craig forgets his drums on band day. The kids and I have a leisurely breakfast, usually do some sort of household chore together for an hour or so (grocery shopping is so much easier with them along to push the car and help with the lifting), then they play and I do whatever I need to do. I'm trying not to put pressure on myself to be too productive working this summer.

But the best part about summer is the evenings. No homework, no soccer practice, no schedule, no scrambling to get the boys to bed by 8 pm. I've even been able to take a walk after dinner a few nights this week. Ah, summertime!

CFS in Redbook

Hey, guess what? Our family is featured in an article in the July issue of Redbook about happy families (page 174)! Isn't that cool?

I responded to a request from the author for interviews with families who had been through rough times and were happy. Her article even included a mention of my CFS blog (in a paragraph about how helping other people helps us), but unfortunately, that paragraph was cut in the editing process. The good news, though, is that the article names CFS and mentions how debilitating it is - good, accurate PR for CFS is always good!

Back Home!

We're back from our 3-week cross-country road trip (if you missed it, there are pictures at our trip blog). We really had a wonderful time - I didn't want it to end!!

As usual, I felt quite good during the entire trip. It's really amazing to me the effect of ditching all the daily to-dos and home maintenance stuff. I was able to take 1-mile long hikes - uphill and at high altitude! Sure, I was exhausted afterward, but there was nothing else I had to do the rest of the day. Of course, I hiked at a really slow pace with lots of stops. It's really pretty funny to see old ladies in sneakers and overweight guys in flip-flops passing me by, especially since I look strong and healthy.

I was thrilled to be able to do some hiking with my family. Before CFS, I loved exercise and all sorts of outdoor activities. My stamina was definitely down a bit from where it was last year - still the effects of Lyme, I guess. Most of the time, I hiked along for awhile, then Ken and the boys went on farther without me. Still, I was pleased to be able to hike at all. For much of the last year, I couldn't even walk around my block without crashing the next day.

Craig did great on vacation. His CFS has always been milder and he's virtually symptom-free with Florinef, even when he's active. Jamie had some down days and was definitely affected by the activity - he sometimes rested in the afternoon when I did, while Ken and Craig did something together - but the slow pace of vacation helped him manage, too.

I'm hoping to maintain some better conditioning now that I've gotten used to a bit of exercise again. I took a slow walk around my neighborhood today. The problem is all the other bits of activity that count as exertion for CFS but aren't really adding to fitness or conditioning - laundry (the washer and dryer have been running non-stop for days!), cooking, dishes, grocery shopping, running errands, and even (though I hate to admit it) sitting at the computer. It seems so unfair that these kinds of things "count" and can keep me from being able to take a short walk.

I'm also surprised each vacation (slow learner!) by the effects of daily stress, or the lack of it. I was really dreading come back home to the never-ending to-do list, over-cluttered house, and jungle-like yard. I tend to use up all my energy just on the daily maintenance stuff, so we never get to things like home improvement (or even pulling weeds). I had 423 e-mails waiting when I turned on the computer this morning (I'm ignoring them for the moment)! And that overwhelmed feeling definitely contributes to CFS symptoms.

So, I'm determined to try to keep some of that vacation feeling going by not getting too overwhelmed and trying to rest more throughout the day so I don't crash. It's a real challenge, though, being back in the real world. I am glad to be back to the blogging world, though - I missed all of you!