Quote It Saturday 11/7

Believe it or not, I have finally caught a virus, maybe the one the rest of my family had two weeks ago or maybe a new one (Jamie's starting to get congested again now). Although I've spent another week flat on my back, it's almost a relief to have "normal" symptoms like other people! For days, I've had a fever (a real fever!) and congestion. Who knows - maybe this virus will finally knock down my hyped-up immune system so I can get back to "normal." My spirits have been good, in part because of my nice weekend last week and in part thanks to some perspective gained from reading a wonderful memoir earlier this week.

The Diving Bell and the Butterfly by Jean-Dominque Bauby is the memoir of a man who was editor-in-chief of the French Elle magazine until a massive stroke left him with locked-in syndrome. He is paralyzed and can only move his neck and one eye. He communicates (and wrote his book) by blinking his eye. Kind of puts CFS into perspective, doesn't it? His book is uplifting and inspiring; his attitude is amazingly positive. You can read my full review at my book blog.

Here are a few brief quotes that I could relate to as someone living with an isolating chronic illness (while clearly recognizing the differences!)...

The doctors brought him a wheelchair, which made him realize that his situation was permanent and not improving, and caused him to move toward acceptance and consider the effect on friends and family:

Oddly enough, the shock of the wheelchair was helpful. Things became clearer. I gave up my grandiose plans, and the friends who had built a barrier of affection around me since my catastrophe were able to talk freely. With the subject no longer taboo, we began to discuss locked-in syndrome.

I think this is similar to what happens when someone with CFS is finally diagnosed, and I love the phrase "a barrier of affection." What a perfect description!

While someone wheels his chair outdoors along the shore, he spots a lighthouse:

I placed myself at once under the protection of this brotherly symbol, guardian not just of sailors but of the sick - those castaways on the shores of loneliness.

"Castaways on the shores of loneliness' - what a beautiful and fitting phrase!

And, finally, considering the difference between his old life and his new:

I am fading away. Slowly but surely. Like the sailor who watches the home shore gradually disappear, I watch my past recede. My old life still burns within me, but more and more of it is reduced to the ashes of memories.

I would highly recommend this book (and I've heard the movie made from it is also excellent), especially on a day when you're struggling with self-pity. Bauby's words are honest and inspiring.

National Family Caregivers Month

November is National Family Caregivers Month, so I'd like to dedicate today's post to my husband, Ken, and all the other spouses/parents/partners out there who tirelessly help to take care of those of us who are chronically ill (and/or who care for aging parents - Ken's out in Oklahoma right now helping his parents). Most caregivers work hard every day with little recognition of their role and effort. People who don't live with these challenges (work colleagues, friends, even family) have no idea what caregivers' lives are like and how much extra effort they put forth every day.

Caring for someone chronically ill (young or old) requires hard work, patience, and often putting someone else's needs before your own. These caregivers are the heroes in our lives, but their challenges and needs are often overlooked. Some resources for caregivers:

• Medicare's Caregiver Page, with lots of resources for all sorts of caregivers
• Empowering Caregivers, a website with articles, message boards, and communities
• Today's Caregiver, a magazine for, by, and about caregivers
• Well Spouse Association, support for spousal caregivers, including local support groups

Ken and I have read two excellent memoirs written by caregivers. Mainstay: For the Well Spouse of the Chronically Ill by Maggie Strong is written by a woman whose husband has MS. Maggie alternates chapters telling their own personal story with chapters filled with facts, expert advice, and guidance for well spouses. Her book resulted in the creation of the Well Spouse Association, listed above.

Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn is written from the perspective of a well husband caring for an ill wife. Gregg's wife, Sherrie, has CFS, fibromyalgia, and has undergone multiple surgeries for various sources of chronic pain. Gregg is a management consultant, so he uses a model of group dynamics to apply to families of the chronically ill, using his own experience as an example, with advice on how to move toward healthier relationships in a caregiving situation.

(Both of these books are now out of print, though used copies are still available - see below. Other books are available at the Well Spouse Website).

I also recently read a memoir, In My Heart by Ursula Hanks, written by a woman caring for her aging parents that I'd recommend to people in a similar situation.

So, take some time today to thank the person or people who help care for you and to let them know how much you appreciate all the things they do. And if you're a caregiver reading this, take some time today to do something just for yourself - you deserve it!

Payback Time

Well, I didn't think I'd get to spend a whole day in NYC walking around and skipping my nap without consequences, did I? No, but a girl can always hope, can't she?

I only felt a little crashed on Monday, and pretty good (not great) on Tuesday. I've been couch-bound for so long, though, that I took advantage of yesterday's pretty good day to get groceries, deposit a stack of health insurance checks, and pay the library fines that piled up this past month. By Tuesday afternoon, I was starting to feel worse, and I woke up this morning back to truly horrible - a burning sore throat and aches so severe that I've spent most of the day in bed (bed days are much worse than couch days).

I'm not entirely sure whether this is a delayed response to Sunday's freedom, a sign that my stamina is so bad right now that the grocery store did me in, or yet another viral trigger messing with my immune system. Does it really matter?

Ken left this afternoon for nine days away, and we're both worried about how I'll manage. He stayed home from work this morning to get some stuff done around the house, which I really appreciated, and I'm glad I went to the grocery store yesterday to stock up, despite the fall-out. He usually tries to limit his time away, but he really needed to get out to Oklahoma to visit his parents, and it's a lot more affordable for us when combined with his business trip to Louisiana (yes, he's visiting our old home without me!).

Lots of good ideas for blog posts, but any more creative writing will have to wait for another day.

Victory!!

I did it - I survived and, yes, even enjoyed my big weekend!

I was still severely ill on Thursday and Friday, with horrible aches, so I spent most of Friday in bed, took two long naps, and started to finally perk up a bit Friday evening, in time to supervise pumpkin carving.

I was able to watch Jamie's soccer game Saturday morning, then came home to rest up for Halloween night. Remember how upset I was that I hadn't been able to work on costumes? Well, Jamie came through with a very creative idea, and Ken and my mom shopped for supplies. We dressed up as the characters from the Where's Waldo? books! Jamie was Waldo, I was Wenda, Ken was Odlaw, and Craig - who likes to do his own thing - came up with an awesome old man costume. My mom and her husband dressed up as Indians. I even managed to go to a few houses on our cul-de-sac with my family and the boys' friends before heading back home to hand out candy.

Jamie and his friend rushed back to the house, showered, changed into dress clothes, and went to their Homecoming Dance! They had a great time and are looking so grown-up now.

On Sunday, the boys in the family headed to NJ for a Jets game, and my mom and I went to New York. Ironically, yesterday was the New York City Marathon, and I ran my own CFS-style marathon in New York! My mom and I went to see Mamma Mia! on Broadway. What a fabulous, happy, upbeat show! Everything about it was wonderful - the cast, the music, the dancing, the costumes, the storyline. And we also enjoyed some excellent food. We had lunch at a little French bistro called Tout Va Bien, and I finally got to try the homemade table-side created guacamole at Rosa Mexicano for dinner. When I finally got on my (late) train to head home, I was stuffed and exhausted - I really did feel as if I'd run a marathon. A couple days ago, I was really sick of lying in bed, but it felt like heaven last night!

I'm back on the couch today, but I feel like I earned it this time. My mom was so worried about me last night - we ended up walking more then we intended because a lot of roads were closed for the marathon, so cabs weren't always possible. But I explained to her that this was a choice I had made, that I knew it would likely result in feeling bad the next day, but the joy and wonderful escape she gave me were well worth it.

Amazingly, Jamie and Craig both made it through their own marathon weekends and are at school today. All in all, a wonderful, victorious weekend!

New Day

Courage doesn't always roar.
Sometimes courage is the quiet voice at the end of the day saying,
"I will try again tomorrow."

I thought I should counter yesterday's depressing quote with a more inspiring one. I have no idea where this originally came from; I read it on a plaque in a catalog, cut out the picture, and keep it in my bathroom. I very often look at it and repeat it to myself before bed when I've had a rough day (like yesterday). It's a nice reminder that no matter how bad things seem, there's always tomorrow - a fresh start, a new chance.

I'm still feeling crummy - definitely didn't sleep long enough for one thing. But I have my mom and my husband to help with stuff today, so I'm going to try to rest a lot (not that I have much choice with so little energy!). Thank you so much - once again - for all the wonderful support and love. Every time I picked up my laptop and read new comments, I got teary-eyed and smiled (I'm pretty emotionally fragile right now!). You all always know just what to say, probably because you've been here yourselves.

Hope everyone has a good weekend and a very Happy Halloween!!

So Sick of Being Sick

And when I knew I had to face another day,
Lord, it made me feel so tired.
- Aretha Franklin, "A Natural Woman"

Those lyrics were running through my head last night as I was struggling to get to sleep. My feelings of joy and freedom on Monday didn't last very long. I had about 48 hours of feeling good (better than last week!). By Tuesday morning, the aches were back, but I had to drive to NJ for my appointment with the Lyme doctor, and I stopped at Target afterward since it's right next door (will I never learn?). By Thursday afternoon after my nap, I felt horrible again and have been back on the couch ever since.

I'm just so sick of feeling this bad and being so completely useless. The rest of my family (including my visiting Mom) are at Craig's last soccer game right now. I hated to miss it, but the aches are just too awful. I don't know what else to even say anymore. I know some of you feel this bad all the time, so I don't want to complain, but I'm just so sick of this.

I just bought a train ticket for NY Sunday. My Mom got tickets to Mamma Mia! on Broadway for my birthday this summer, but there is a really good chance I won't be able to go. And Halloween? I usually have some great plan for creative costumes for all of us, but I've done nothing at all this year. At least tonight's dinner is already in the crockpot. I better put the laptop away.

I Took a Walk!

I feel like Rip Van Winkle waking up from a 4-week nap. It's the end of October? The leaves are already half gone from the trees? When did this happen?

I am definitely feeling much better, for the second day in a row, after a couple of days of feeling sort of so-so (a big step up from blech). After breakfast this morning, my son asked if I felt well enough to walk to the bus stop with him instead of driving, and I was so excited to be able to say, "Yes! Yes, I do feel well enough to walk!" So, we walked up the street in the cool autumn sunshine - the air smelled so good!

I also made a short trip to Trader Joe's this morning to restock since we used all our convenience foods while I was sick. I am filled with joy and such a sense of freedom! To be outdoors, to be able to walk, to go to the store when I need to! Amazing. The bad times with CFS certainly do help us to appreciate the good days. Driving with the sun coming in through the window, I was stunned by the bright paintbox colors of the trees. Beautiful.

I have a very busy week ahead, and I am acutely aware of how fragile my well-being is. We have Craig's last two soccer games, I go to NJ to see the Lyme doc tomorrow, my Mom comes to town on Wednesday for our book group, her husband joins us on Friday for Halloween weekend, and on Sunday, my Mom and I are supposed to go see a show in NYC for the day while Ken and Pop Pop and the boys go to a Jets game. Even more for Jamie, he has his homecoming dance on Saturday night.

A too-full schedule even on a very good week, so wish me luck! I will try hard to pace myself. Thanks again for all of your encouragement and well wishes during my long, severe crash - your words of support really helped me get through the dark days!

Follow-Up on Dr. Oz Show

Thanks for the great response to my Friday post about CFS on the Dr. Oz Show. Hopefully, our letters will do some good and convince Dr. Oz that CFS deserves its own coverage, not lumped in with other causes of fatigue.

I thought you'd all be interested to hear that Dr. Teitelbaum himself responded to my blog post and your comments! He explained his own comprehensive approach to treating CFS and his understanding that CFS is different from chronic fatigue; however, this doesn't change the fact that none of that came across in the TV segment. You can read his full comment and my response in the comments section of Friday's post. There is still no video clip of the CFS segment of Friday's show, but Dr. Teitelbaum's own website provides a recap of what was covered (along with a discount on his supplements!).

I also wanted to let you know that we're not the only ones who were frustrated by Dr. Oz's misleading coverage of CFS. There is a very active discussion forum on this topic at Phoenix Rising, an excellent source of information on all things related to ME/CFS. From the forums page, just click on Action Alerts and Advocacy, under the ME/CFS News heading. If you want to participate in the discussion forums, you can register (it's quick and free). The Dr. Oz/Dr. Teitelbaum discussion has garnered over 150 responses so far, so it's clear this is a topic of great interest to the CFS community. Apparently, there was also a lengthy discussion on Facebook in the CFIDS Association group (I missed that while I was sick)

Let's hope our voices will be heard in this matter!

Quote It Saturday 10/24

Slowly, gradually improving here. My energy is finally starting to come back - slowly, Craig is 100% better thanks to antibiotics, and Jamie went back to school yesterday, though he's still pretty wiped out today. Unfortunately, now my husband seems to be catching the virus that Jamie and Craig had this week, starting with some congestion and a cough, so he's running down. Thank goodness he didn't get sick last week - I don't know what we would have done with me being so incapacitated.

Today's quotes are from a novel I enjoyed, The Art of Mending by Elizabeth Berg:

"We're so lucky," she said, and I nodded into her shoulder. "It's kind of scary to be so lucky," she said, and I nodded again. I knew exactly what she meant. Sometimes being lucky is only waiting for a fall.


...There are random moments...when I feel a wavelike rush of joy. This is my true religion: arbitrary moments of nearly painful happiness for a life I feel privileged to lead.
- The Art of Mending by Elizabeth Berg

Both of these quotes very closely mirror my own feelings about my own life, as I described in a very similar way a few years ago in my blog post, A Life of Contentment with Pockets of Despair.

Hope you're all enjoying a relaxing weekend.

Very Inaccurate Coverage of CFS on Dr. Oz

These last few weeks, we've all been reading and celebrating all the scientific, accurate news stories on CFS that have emerged since the news of XMRV in CFS. Well, I saw today that the battle is far from over. I heard that the Dr. Oz Show would be covering CFS today, so I tuned in, expecting to hear about XMRV on a popular, national medical TV show. Wow, was I disappointed! Even my 11-year old son (who's still home sick) could see immediately that Dr. Oz got it all wrong.

He started by announcing that if you are exhausted and sleep doesn't help, then you have CFS. He didn't mention a single one of the immune dysfunction symptoms or even exercise intolerance. He talked about anemia and thyroid problems. Then he explained how people with CFS could be cured (yes, cured!) with diet changes and supplements. The problem was that his CFS "expert" guest was Dr. Jacob Teitelbaum. I read Dr. Teitelbaum's book, From Fatigued to Fantastic, which focuses on chronic fatigue (the symptom) rather than CFS. He doesn't differentiate and claims to have a high cure rate for CFS based on his program of nutritional supplements (of course, that's because his patients have chronic fatigue, not CFS). His book doesn't address immune dysfunction at all. Even worse, Dr. Oz didn't even mention the XMRV research.

I would point you to a video of the CFS segment, but they chose to post a video of the G-spot story on their website instead! Dr. Oz has a huge impact on the general population because of his connection with Oprah. Please join me in telling him that his story about CFS was inaccurate and he needs to tell the REAL story. You can send a message to the show here.

Here's the text of my message:
"I was extremely disappointed in your very inaccurate coverage of Chronic Fatigue Syndrome on your October 23 show. I have read Jacob Teitelbaum's book and many of his articles. He is an expert on chronic fatigue, the general symptom, but not Chronic Fatigue Syndrome (CFS), the defined immune system disorder. CFS is far more than fatigue that is unresponsive to rest. You didn't even mention any of the symptoms of immune dysfunction that are common for CFS: sore throat and swollen glands, flu-like aches, and feeling feverish despite lower-than-normal temperature. In addition, the most unique, defining characteristic of CFS is an intolerance to exercise, where even mild exertion causes a sudden, severe worsening, whereas general fatigue is often improved by mild exercise.

On the show you talked about anemia and thyroid problems, two diagnoses that could exclude a diagnosis of CFS. For someone who actually has CFS, iron supplements, diet changes, and D-ribose would have only a very minor effect on the devastating symptoms, if any at all.

Finally, it is particularly disturbing that you presented such an inaccurate, non-scientific view of CFS at this time, after the momentous CFS research published two weeks ago in Science that connected CFS to a newly identified retrovirus, XMRV. See these websites for more information:
http://www.wpinstitute.org/xmrv/
www.cfids.org

I hope that you will cover CFS again on your show, to provide the real facts and try to un-do some of the damage you have done to those of us suffering from this severe and debilitating disease with your very misleading and erroneous coverage today.

Sue Jackson
CFS for 7 years
Both of my sons also have CFS (yes, it also has a genetic link which has been proven in many scientific studies)"

Tell the Dr. Oz show what CFS REALLY is!

Infectious Autumn

I think I'm a little better today. I'm actually sitting up (well, reclining in a lounge chair) and am outside on the deck. It's a beautiful fall day. I feel like I've missed the whole month of October, which happens to be one of my favorites!

Unfortunately, both of my sons are home sick today. I did manage to take them both to the doctor's office and pharmacy, so that was a big achievement for me! It's a lot harder to rest with them home, though. We need more couches.

Craig has bronchitis and started on antibiotics. Jamie sounded like he was heading to bronchitis yesterday, but his congestion actually got much better overnight, so he has a prescription to hang onto just in case. I think maybe that revved-up immune system did him some good and he plowed through whatever this virus is in just a few days. He's still feeling wiped out, but that could just be CFS.

As I've said many times before here, I am hugely grateful for our wonderful pediatrician (see A Doctor Who Gets It...Priceless). I told her about the latest news linking CFS with the XMRV retrovirus, and she was very excited. She said she's seen two teen girls recently (I think they're the two we sent to her!) who have very severe OI but don't exactly meet the criteria for CFS, and she'd love to have a diagnostic test available to help.

The doctor said she can't remember a season as bad as this one for viruses - not just H1N1 (though there's already lots of that around here), but all sorts of infections. Craig said 37 of the 100 6th graders at his school were absent on Wednesday, and the school nurse at Jamie's high school says she's sending home 20 students every day with high fevers (and those are just the ones who go to the nurse's office!). My kids have done remarkably well so far. We're now considering whether Craig should get the H1N1 vaccine when it's available. His immune system is actually much closer to normal than mine or Jamie's, and he does sometimes catch viruses. I shared Dr. Lapp's advice with our pediatrician, but she's not exactly sure what to do either. It's a tough call.

I'm hoping my heavy doses of doxycycline for Lyme will protect me from the bronchitis. Well, that's probably enough computer time for today - I'm going through major withdrawal! I must be doing a little better because I've progressed to feeling a bit restless and unproductive. That's a step up from just feeling too sick to care!

Has the Other Shoe Dropped?

I am still severely crashed, still stuck lying on the couch with a terribly sore throat and severe aches all over. It's been more than three weeks of this now, when my crashes typically only last a day or two. I am forced to consider the unthinkable: could this be my "new normal"?

Ever since the boys and I improved to the point of being able to function somewhat normally (they with Florinef and salt for OI; me with OI treatment, antivirals, and low-dose naltrexone), a part of me has been waiting for the other shoe to drop. If you read my blog regularly, you know that I am not normally a worrier. I try hard to stay positive, to focus on today, and to be grateful for what we have. But there's always a little bit of anxiety hiding behind the surface, feeling like all three of us are time-bombs waiting to go off.

That part of me has been worried - more about the boys than myself - that one of us will be exposed to one of CFS's trigger infections that will cause a long-term worsening. Both of my boys still test negative for Epstein-Barr Virus, so I mostly live in fear of one of them getting mono, a well-known CFS trigger. I've certainly read plenty of stories of others with CFS who suddenly and inexplicably worsened. So, after almost a month of feeling awful, I have to wonder - is that what's happened to me now?

Fear not, though. While I recognize that my fears could turn out to be valid, I am trying not to let them overwhelm me. I reminded myself last night of the lessons I learned years ago about hope and control, namely that I do have some control over my circumstances and that I am not entirely at the mercy of forces outside myself.

So, I am doing what I can to try to promote recovery - mainly what I like to call Aggressive Resting (a wonderful oxymoron). This is very hard for me! I realized this weekend that I definitely get worse after sitting at the computer or cooking dinner,and I get a little better after lying down for several hours. So, I am newly dedicated to REST...lying down as much as possible, letting Ken handle cooking, even - gasp! - limiting my time on the laptop (this is it, I swear...). Even harder, I think I need to stay home this afternoon and miss Craig's soccer game. I've been dragging myself to the games twice a week, and I always feel worse afterward. This morning, I even turned off the tv, put down the books and magazines, closed my eyes and meditated (twice). I am a multi-tasker at heart, so it is real work for me to truly slow down like this, but I am trying.

And in that spirit, it's time for a quick lunch and a long nap.

Quote It Saturday 10/17

October 17? Seriously? I feel like my life is passing me by as I lie on the couch. Doing a little better today and trying not to overdo.

I've been borrowing a weekly theme from my book blog and posting a book quote each Saturday. I'm kind of cheating on today's quote because I haven't actually read the book, but we did watch the movie with the kids last night, and the movie is based on a book, so that counts, right?

Be the hero of your own life story.
- Nim's Island by Wendy Orr

This line was repeated often in the movie (and, I assume, in the book), and it really resonated with me. It encourages you to take responsibility for your own life, challenges and all, and reject a victim mentality. I think this is my new personal motto.

There's another movie I want to share with you - not actually a quote but more of a concept. After the kids went to bed, Ken and I watched the movie Blindness (also based on a book!). Have you seen it? Basically, a strange epidemic hits where people suddenly go blind. It's obvious right away that it's highly contagious, so widespread panic ensues. The government's response is to round up everyone who's gone blind and put them in prison-like detention centers, where they're pretty much forgotten as the outside world freaks out. There's so much effort put into quarantining the blind people that there seems to be no effort at all to examine them or investigate to find the cause of the epidemic. The detention center at the heart of this story ends up going a little Lord of the Flies as food becomes scarce.

So, partway through this movie, I said to Ken, "It's a pretty pessimistic view of humanity and the government, isn't it?" (that's me, the eternal optimist).

Ken said, "Really? You can sit there with CFS and say that? Isn't this exactly what the CDC has done with CFIDS for 20 years?"

"Wow, I guess you're right. We've just been set aside and ignored haven't we? Do you think now that there's some indication there might be an infectious component to it, they'll stick us in detention centers?"

I just thought the parallels were interesting and ironic. It was a good movie, though parts were pretty disturbing. Hope I won't be seeing some of you in an abandoned psych ward anytime soon!

More Infrormation on XMRV Virus and CFS

Information continues to pour out regarding the new study showing a relationship between the XMRV retrovirus and CFS:

• New York Times Q&A with Dr. Nancy Klimas - and check out the avalanche of comments!
  
• New Yorker follow-up interview with author Laura Hillenbrand
• Information directly from the Whittemore-Peterson Institute, including Q&A and results of a follow-up study showing XMRV occured in over 95% of the CFS, FM, and atypical MS patients tested.
• Information on XMRV testing, and an update, from CFS Warrior. Tests should be available in 30-45 days.
• XMRV statement from the UK's ME Association
• Statement about XMRV study by Dr. David Bell (Jamie and I have both been to see Dr. Bell; he's a wonderful, dedicated CFS expert)
  

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!