Friday, December 15, 2006

Day of Rest

Wow, I've really been neglecting my blog lately. There's all of the usual holiday stuff keeping me (too) busy but also a new development in my life that's both exciting and terrifying. Out of the blue, I've been offered some consulting work in my old field. Our finances have been especially tight this year, and the work is both local and flexible, so I've decided to give it a try. I've been dying to write about all this because I've been feeling so conflicted this week, but I'm just not up to it today.

I'm feeling wiped out today - sore throat, aches, the works. I woke up several times during the night soaked in sweat, too (what's that all about?). I've been pushing myself all week to do more and get things done, but today my body is leaving me no choice but to rest. Since I have a lot of trouble staying still and truly resting when there's so much to do all around me, I plan to pop in my video of "It's a Wonderful Life." It's my all-time favorite that I try to watch every holiday season. Today gives me a good excuse.

Rest and recover, and I'll write more about my scary work proposition in a day or two.

Wednesday, December 06, 2006

Viruses and CFIDS

Right after writing about how good I've been feeling, I had several days of feeling worse. My kids would say I jinxed myself! Still, I only felt mediocre, not horrible, and I'm back to doing pretty well this week.

Lots of CFIDS research has considered viral triggers for CFIDS starting or relapsing. Dr. Bell summarized it well in a recent newsletter. I've always felt that immune system dysfunction/activation was at the heart of my own illness, in part because every crash (since the very first day) started with a sore throat.

With three of us in the house now having CFIDS, the role of viruses in our illnesses has become even clearer. Shortly after Jamie first became sick, I noticed that he and I would often crash at the same times. Previously, I had assumed that all crashes were caused by over-exertion or stress, but the pattern of Jamie's and my crashes was strikingly similar.

This fall, with Craig now also diagnosed, the three of us went through several rough crashes - at about the same time and with very similar symptoms. It's become obvious that our worst crashes are triggered by exposure to a virus of some sort (lots of them around with both boys in school).

Just this past week, I was stymied as to why I was suddenly feeling poorly again. I thought it might be an approaching storm front, but the barometric pressure finally rose again on Saturday and I felt worse than ever. I commented to Ken that my legs and hips felt unusually achy. Sunday I felt better, but by Sunday evening, Jamie was complaining that his hips ached! This is not a normal symptom for either of us; it must have been triggered by exposure to the same virus. Fortunately, our overactive immune systems quickly recovered, and we're both feeling good again this week. In retrospect, while I was feeling poorly last week, Jamie was struggling with a lot of brain fog during homework time every evening.

I try to avoid offering advice on treatments because I know it's not always well-received. I myself often react negatively to others' advice, particularly claims of a cure or complete recovery. I'm going to briefly depart from my own restrictions, just to mention some immune system supplements that have definitely helped me to improve over time. Certainly not a cure, but I've welcomed any improvement at all, and I'm fairly high-functioning now. While lots of treatments help symptoms, I feel that these focus on the root cause in CFIDS, the immune dysfunction.

By the end of 2003, I was at my worst. My throat hurt almost all the time, instead of only at the start of a major crash. Frustrated that the only medication for immune system "balancing" was unavailable in the U.S. (Immunvir), I conferred with an herbalist who suggested mushroom supplements. Within a month, I felt significantly better, and my sore throats were back to only appearing during crashes. I've maintained this improvement for several years now and still take the supplements every day. There are two good ones available: RM-10 and Host Defense. These are both quite expensive. I found the best prices at Web Vitamins, and my insurance company gives me an additional discount there.

The other immune supplement that has helped considerably is olive leaf. I read an article somewhere that olive leaf had anti-viral, anti-bacterial, and anti-fungal properties and decided to try it (at roughly the same time in 2003). I had required antibiotics several times that year to combat sinus infections and bronchitis, reacted badly to them, and wanted to avoid them. In short, it worked. Since I started olive leaf two years ago, I've only had one sinus infection (this fall). My husband now takes it when he's exposed to a virus or feels a canker sore starting. We treat it like a miracle drug around here! Last month, after being assaulted by so many viruses in September and October, I started taking olive leaf every day (twice) rather than only when exposed to something. I have no idea why I've been doing so well, but I'm wondering if the olive leaf is behind it, especially with more and more research pointing to dormant viruses in people with CFIDS. November was the best month I've had in over four years (yes, I keep track!)

Kind of long-winded today, but I hope that someone out there might be helped by my experiences. Book group tonight - can't wait!

Tuesday, November 28, 2006

Back to the Blog

I knew I hadn't written in my blog for awhile, but I didn't realize it had been almost three weeks! This is good news...I've neglected my blogging because I've been feeling well enough to be engaged in other pursuits and have used my writing time for earning some much-needed extra money. So, how about a quick re-cap of the highs and lows of the past three weeks?

A definite high - we enjoyed one last camping weekend this season with a wonderful trip to one of our favorite parks (a beautiful place with the unlikely name of Turkey Swamp). The weather was nice, we hiked and geocached, and enjoyed just getting away from the phone, TV, computers, etc.

Then, a series of relative lows (though, in perspective, nothing horrible)...a $2000 repair bill for my aging VW, an electric surge burning out our washing machine and requiring a new one (the same week as the VW), and yet another sinus infection for Craig. Then a big one...

Two Fridays ago, with Ken out of town, I let the boys have a friend sleep over, and we ended up in the ER until 2 am. It was a freak accident (not so unusual for Craig) - in trying to clear off the bed in the dark, Craig tripped and hit his head on the nightstand. I heard a piercing scream, ran down the hall, and found my sweet little boy covered in blood. Pretty gruesome. He got 16 stitches, and Ken got yet another phone call as he returned home that he should meet us at the children's hospital. Believe it or not, this was the third time Ken has returned from a trip and had to meet me or the kids at the ER (and he doesn't even travel very often!). Our little Frankenstein is healing nicely now and had his stitches taken out last week. That makes four head injuries in his scant eight years.

Finally, we had the usual holiday frenzy. We flew to Oklahoma last week to spend Thanksgiving with Ken's parents. Our nephew and his family joined us from Texas, and we had a wonderful time. I was dreading the flights, but it all went well. I made a special effort to intake lots of salt and keep my blood pressure up, and I fared much better than on previous flights.

I've really been feeling good this past month and hoping it will last!

Wednesday, November 08, 2006

CFS Awareness Bracelets

I recently read an article about a mother and daughter who have started a business making jewelry, including awareness bracelets for CFS and other illnesses. I went to their Girlie Girls Jewelry Studio website and was so impressed!

This is my personal favorite of the two CFS awareness bracelets they show. I've already told Ken I want one for Christmas! They chose stones based on traditional healing properties, and part of the price goes to the CFIDS Association of America to support CFIDS research. My boys love these, too; I've already e-mailed the Girlie Girls to request a male version (sans flowered beads).

Check out their website which also includes bracelets for breast cancer, arthritis, diabetes, and more, plus some other beautiful jewelry designs. Get a head start on your holiday shopping, support CFIDS research and awareness, and pass the word along!

Monday, November 06, 2006

Living in a World Apart

We spent our Saturday immersed in soccer activities. Each of our sons played in their last games (3 hours on the chilly sidelines for me), and we went to an end-of-season bonfire party Saturday evening. Too much for me, of course, and I felt rotten on Sunday, but the boys both handled the heavy exertion well.

I found myself focusing more on emotional impacts, rather than the obvious and expected physical effects, though. Spending the entire day with a large group of casual acquaintances reminded me that we live in a different world. I was surrounded by people most of the day but felt very alone. It's like living in an alternate, invisible universe.

For starters, at both the games and the bonfire, most people were standing around, talking, while I had to sit. It's a small thing, but it separated me from the other parents. At the games, I wondered if they thought I was shy or even stuck-up because I wasn't standing with them and talking. I have always enjoyed social gatherings - used to be something of a party animal, in fact - and it still feels strange not to be at the center of the fun.

When someone did sit next to me and I tried to engage in conversation, I found that it was pretty one-sided. When someone I don't know well says, "How have you been?", the only appropriate answer is just to smile and say, "fine." Even with a Mom that I know better (and who knows of our health issues), I didn't want to bore her or scare her away. If I'm honest and talk about our daily challenges - and even our successes - she looks at me with pity and doesn't know what to say. So, I keep it light and positive and shallow.

When I manage to include myself in a group conversation, there's so much that sets me apart. Other parents ask what sports our boys are playing this winter. How can I explain that we're relieved to have made it through one sports season and can't manage any more? Two friends told us about a family summer camp they go to every year, saying, "You guys should come. You'd love it!" How can we explain that an action-filled week like that is completely impossible for us? Everyone is drinking beer and talking about how last year's bonfire party lasted past midnight. How do we explain that our boys need to go to bed before 9, even on weekends?

The answer, of course, is that you don't explain all these things. It's impossible for people leading normal lives to understand how different our life is. To try to explain would only alienate them and make them pity us. So, we just smile and keep our mouths shut. By the end of the night, I felt as if I hadn't honestly interacted with anyone. I've always been an upfront person - what you see is what you get - so this kind of superficial interaction feels false and unsatisfying to me.

This really is an invisible illness. Parties and other social gatherings that I used to enjoy just leave me feeling isolated and alone. I feel I have more in common with other CFS bloggers who I've never met in person than with the other parents in my own town. It's as if the world is now divided into two types of people: those who understand CFIDS and those who don't.

As Ken reminded me at bedtime, we have a wonderful life together with our two sons. We do a lot of great things together and have plenty of fun. I am quite satisfied with my life most of the time. I am grateful for our little family and the world we've created together, even with the shadow of CFIDS. My world has grown smaller, but I feel at home in this small world and blessed by the love of my small circle of friends and family who do understand.

Friday, November 03, 2006

A Big Day for CFIDS!

We are so excited here about the huge CFS publicity campaign that's being kicked off this morning! It looks like CFIDS will finally get the attention it deserves in the media, leading hopefully to a more informed public and better-funded research.

At the CDC's press conference this morning, they'll be announcing the NIH's seven new grants for CFS research studies. They all look like solid, useful scientific studies. Hooray!

The media coverage began last night in a big way with an excellent story on CFS on the NBC Nightly News featuring Jennie Spotilla, a fellow CFS blogger. Jennie's interview was awesome, and the whole story was well-done and accurate (a miracle considering past media coverage of CFS). CBS Evening News says they may run a story on CFS tonight, too.

Once the press conference is finished this morning and a story goes out on the wire, expect to see articles in newspapers and magazines across the nation. US News and World Report will run a CFS story in their Monday, November 6 issue. Other magazines have expressed an interest in covering CFS soon, including Glamour, Woman's Day, More, Shape, Self, Prevention, and First for Women.

So, tune in, keep your eyes open, and celebrate this long-overdue attention! Then go to the CFIDS Association's Action Center to send letters of support (it only takes a few minutes).


Thursday, November 02, 2006

Fun, Fun, Fun!

We did it! We made it through another Halloween with everybody feeling well and able to go trick-or-treating. Holidays are so tough with CFIDS - all that fun and excitement can make you so sick. It's always a happy relief to come through one successfully. I went along for a bit of trick-or-treating at the houses near ours, then Ken took over and escorted the kids (our two boys, plus three friends) to the rest of the houses in our neighborhood. There's nothing like the thrill of Halloween night - dressed up in costumes, with your best friends, running from one house to the next, collecting candy. My boys just love it (and we do, too!), and I'm so glad they were able to enjoy it. I was prepared for crashes the next morning, but - surprise! - they both weathered the exertion OK. Maybe the Florinef is already starting to work for Craig. I felt pretty rotten yesterday morning, but a 2-hour nap and a shower revived me.

And now, all of a sudden, it's November, and the rest of the holiday season is upon us. Yikes! Time to start thinking about gifts and travel and cards and whew... Hopefully, the boys' good health will continue for the next couple of months.

Here we are on Halloween night. We decided to re-use our togas from Jamie's Greco-Roman Night school function last spring. Jamie, being in middle school now, went for the Ancient Greek-Zombie combo, and Craig chose to be a knight. Now we have huge bags of candy all over the house - tasty but dangerous!

P.S. CFIDS will be covered on the NBC Nightly News tonight and on the Fox morning show tomorrow for the kick-off of the big CFIDS Awareness Campaign in the U.S. Another CFS blogger will be interviewed on the shows - - be sure to tune in!

Tuesday, October 31, 2006

Happy Halloween!

There are lots of things I want to write about, but today is Halloween! So, for a little Halloween fun, I thought I'd just post a few photos from our past years' festivities and hit the heavier topics some other day.

Both of our boys are feeling good and in school today (hooray!). I am very grateful that, even during Jamie's worst periods, they've always felt well enough to enjoy one of their favorite holidays and go trick-or-treating. In fact, Halloween is a family affair in our house, as you can see here. Ken and I always try to come up with costumes for ourselves to complement whatever the kids have chosen.

Three years ago, we went with a Star Wars theme - one of our better endeavors, if I do say so myself. Jamie was Luke Skywalker, Craig was Hans Solo, Ken made a very convincing Obi Wan Kenobi, and I was Princess Leia (awesome wig, huh?).'s being uncooperative with my photos today, so the others will have to wait. Time to go pick up Jamie at the bus stop, so the fun can begin!

Hope everyone has a great Halloween!

Wednesday, October 25, 2006

Banging My Head Against the Wall

Outside my home office, there's a mama cardinal smashing herself against the window from dawn until dusk every day, probably defending a nest in the bushes. We worry about this poor bird and are driven crazy by the constant banging. We've tried everything - lights on, lights off, blinds up, blinds down, even a big bird silhouette taped to the window. She did the same thing last fall, relentlessly protecting her family day after day, with no thought for her own comfort (she must have one hell of a headache each night).

I have felt just like that mama bird these past couple of days, beating myself senseless and making no progress.

Poor little Craig is still severely crashed - he's missed five days of school this time (so far). I feel helpless seeing him so sick, and I'm exhausted from trying to help him catch up on missed work and also trying to help Jamie make up what he missed last week.

I spent all morning yesterday trying to get reimbursement from our insurance company for a $200 lab bill that they say they won't cover. Then I got a phone call from the VW dealer that my 14-year old car needs $2000 worth of repair work.

And then there's CFIDS itself. In trying to defend my lab test to the insurance company, I pored over all kinds of CFIDS research to collect documentation to support my claim. There are so many theories out there, but nothing seems to really work. I read all the research, have endless meetings with my doctor, and try everything. Some things help a little, but nothing ever helps a lot. Sometimes all my work to find effective treatments seems to amount to no more than banging my, head against the window.

I'm trying hard to recall how I felt this weekend and to stay positive, but some days it's an uphill battle.

Monday, October 23, 2006

Highs and Lows

I haven't written a blog in over a week because I haven't had a moment to myself! It's been a rollercoaster week, with all four of us taking turns sick. Jamie missed four days of school last week, and Craig missed last Thursday, Friday, and today. I felt bad on Thursday and really horrible on Friday (and bad again today). Even Ken (who hasn't been sick in years, thank goodness) came home from work sick on Friday and spent most of the weekend in bed. I suspect whatever virus he caught is what's wreaking havoc with our immune systems.

Craig and I both felt great this weekend. He was bubbling with energy and his usual exuberance. I was also full of energy (good thing since Ken was out of commission). I cooked a lot, took walks with Craig and with a friend, and took Jamie to his soccer game.

I noticed this weekend, as I often do when I temporarily feel like my "old self," an intense surge of joy and energy. Obviously, I feel relieved to be feeling good for a change, but this kind of elation goes beyond that. Maybe it's partly a biochemical thing - all those feel-good hormones that have been in short supply suddenly flooding my brain. In any case, at these times, I feel hugely grateful for my life and almost astonished at all the wonderful things surrounding me. I feel as though the world is so full of great books, music, foods, exciting places to see and people to meet that I can't wait to experience it all. I feel filled with joy.

I'm not sure whether I've adequately described this feeling of joy and love of life. It's the polar opposite of the depressed state that can accompany really severe crashes. I want to blog about some of things that bring me joy - whenever I can find a few moments to myself!

Friday, October 13, 2006

A Sense of Perspective

I regained my sense of perspective about our family's health issues this morning on a trip to our local children's hospital.

Craig needed a back x-ray (his pain is probably "just" CFIDS, but the doctor wants to rule out other causes). As the boys and I sat in the waiting room of the imaging area, we saw children with all sorts of severe disabilities. So many kids, big and little, in special wheelchairs, hooked up to tubes or unable to walk on their own. One young boy had a seizure in his wheelchair right in front of us. His chair was filled with all sorts of medical equipment, and his mom looked at him and said to her companion, "Yes, he's definitely seizing this time. Well, we're in the right place for it." She was so calm and accustomed to this that it brought tears to my eyes.

I often think about how grateful I am for all that we have - each other, our family and friends, a comfortable home - and try to appreciate the joys in our lives, but seeing all those families at the children's hospital today made me feel even more blessed. Our health problems are certainly challenging, but they're nothing compared to what some of these other parents have been dealing with every single day since their child's birth.

The past two days, with school out, my boys have had a blast - running and playing with their friends, coming home laughing and covered in mud, having a friend sleep over last night. It's been like a mini summer vacation for us. I am so very grateful that they have the strength and vitality to play and be carefree like that. Tonight, I am very aware of our blessings.

Tuesday, October 10, 2006

Moving Forward

"Crying is all right in its way while it lasts. But you have to stop sooner or later, and then you still have to decide what to do."
- The Silver Chair, book 6 0f The Chronicles of Narnia, by C.S. Lewis

We're all still trying to recover from last week's major crash, but things are definitely better now. Craig seems to have pulled out of it completely, and Jamie's still a little low on energy and battling some brain fog but doing much better. Both boys went back to school on Thursday. I got much worse and pretty much collapsed in my doctor's office on Friday. She put me on an anti-viral which seems to have finally done the trick. My stamina's still low, but I'm making progress.

I realized last week that it was time for a major attitude change. With respect to Craig, my 8-year old, I think I've been still stuck in feelings of denial and anger. Each time he gets sick, I get stressed about what it means long-term and really stressed about the missed school days (my husband does, too). I end up being short-tempered with the kids, putting more pressure on Craig to return to school, and probably making both of us sicker.

It's time to move forward into acceptance and leave this gray area behind.

We finally talked to Craig last week about his probably having CFIDS. We emphasized what Dr. Bell told us last year - that it's mild and it might never get any worse (I hope and pray) - but it was time for Craig to understand what's going on, especially the cause-and-effect of post-exertional crashes. He took it pretty well. He has probably suspected as much at times during the past two years.

I tried to make him an appointment with Dr. Bell, but he's no longer seeing new patients (Craig was never yet officially his patient). I was terribly upset about this at first, but I contacted Dr. Rowe (the expert on pediatric OI and CFIDS). He was wonderfully available (via e-mail) and supportive, as always. He said to stop worrying about testing Craig for OI, since young kids fidget too much to get an accurate result anyway. He said with Craig's symptoms and family history, he'd just try treating for OI; we should see the same sort of improvement with Craig that we've seen with Jamie.

We met with Craig's pediatrician yesterday, got a doctor's note for the school, and had her rule out other causes for Craig's back pain. She's going to talk to Dr. Rowe and follow his recommendations.

This change of attitude was just in time, as Craig's teacher has requested a meeting this week with us, the principal, the school nurse. etc. We've been through all this before. In fact, Jamie's school administrators have also requested a meeting after his absences last week to revise his 504 plan (educational plan for accommodations).

With both schools, we need to emphasize that the crashes are a part of the illness, that they need to expect these periodic absences of several days or a week, so they'll all quit freaking out each time it happens. Once we get past these meetings, Ken and I will breathe a big sigh of relief. As upsetting as it is dealing with our children's illnesses, it's sometimes even worse dealing with the school systems.

So, I'm trying to get back to my more typical positive attitude. It really helps a lot just to have finally labelled Craig's CFIDS and be dealing with it openly with him. Once again, we are looking for our "new normal," trying to adjust to this as an integral part of our lives instead of falling apart every time there's a crash. I learned that lesson years ago for myself and am now re-learning it with my children.

Wednesday, October 04, 2006

Who Takes Care of Mom?

It's Day 3 of all three of us being sick at home. I'm doing a little better this morning, but I had a little break-down last night.

It's impossible to take care of myself and rest like I need to when both boys are also sick. Twelve-year old Jamie is fairly self-sufficient and is content to read for hours at a time (he also had plenty of practice with crashes during the past two years). Eight-year old Craig requires more attention. Plus, he seems to be constantly hungry when he's crashed, asking me for more food within minutes after finishing a meal (just as I wrote that sentence, he said, "Mom, I'm hungry")!

Last night, my husband and I were struggling to help both boys with missed schoolwork, they were both feeling worse as it got later, and I felt really awful. Oh, and I was tryng to pay our bills at the same time (several of which were late because I've been so sick lately). I finally just hit overload. I left the room so my kids wouldn't see me lose it.

Here's the scene that says it all about being a Mom:
I was lying in my bed in the dark, quietly crying about everyone needing me when I just needed to rest, and Jamie walked into my room. In a sweet, nurturing voice, he said, "Oh, Mommy. I'm sorry you're feeling so bad." He gently rubbed my back. (30-second pause and change of tone) "Mom, I need your help on a Social Studies question." Perfect.

Of course, I really love being a Mom and wouldn't trade my life for anything, but sometimes it's so hard to take care of everyone else. Who takes care of Mom?

Tuesday, October 03, 2006

Another One Bites the Dust

Jamie crashed this weekend, and Craig and I are crashed again (still?), too. Whew, it's been a rough month. Maybe it's due to exposure to all those fresh school germs. Anyway, Craig has another doctor's appointment this morning. Jamie's still feeling rotten, but it's his first full crash in about 6 months! He was bummed yesterday that he won't have perfect attendance this quarter. Perfect attendance?? He missed 60 days in 5th grade, and we didn't even bother counting last year, but his attendance was definitely less than 50% overall. So, we can certainly ride out this crash.

Besides school and soccer starting in September, we attended two out-of-town family weddings. It's no wonder the boys and I keep crashing. Despite the consequences, I'm glad we went to the weddings. Family is so important. It's really been nice to spend time with our family this month, get dressed up, and celebrate. I even danced a little, just like a normal, healthy person (probably why I crashed so badly). I danced with my Dad and with Ken, my husband,and even did a cautious boogie to "We Are Family" with my aunts!

So, we did have some fun this month, despite the long drives and late nights. I'm trying to keep in mind the highlights, as the three of us lie around the family room trying to recover. I better fix some lunch so we can get to the doctor's office on time.

Tuesday, September 26, 2006

CFS Sucks

Some days, there's just not much more to say about this rotten illness. My son, Jamie, and I saw these t-shirts last year when we were both really sick. Catchy, no? (get your own at No Pity Shirts. I'm also partial to the one that says "F*** Fatigue").

So, why the bad attitude today? Well, I've been flat on my back for almost a week now. Looks like I caught the virus my sons had last week, then developed a sinus infection, just like my younger son, Craig (he gets those narrow sinuses from my side of the family). I should have known when I crashed so suddenly and inexplicably last week that an infection was behind it. I'm on antibiotics now and expecting to feel better soon.

I can handle my own crash, but I'm really feeling down about my younger son, Craig, today. The kids had a day off from school yesterday. I was very sick, so they were pretty much on their own. They spent the entire day running around the neighborhood with a group of friends, playing tag and Capture the Flag...basically, having a blast and being normal kids.

But my kids aren't normal. We're cursed with this wretched illness. Craig woke up this morning feeling horrible. He was on the floor, crying, complaining of sore throat, headache,and aches all over (sound familiar?). The worst part is that I filled him up with meds and sent him off to school. He just missed 6 days in the last two weeks and can't miss more already. I feel like the world's worst mother. Watching my baby get on that school bus, feeling so miserable, broke my heart. Seeing this unmistakable pattern of symptoms in him breaks my heart, too. He's only 8. It's so unfair.

As an adult, it's hard enough to moderate my activity level when I have a good day. It's almost impossible with a kid, especially since Craig still feels good most of the time. How do you tell a kid who's feeling great that he can't play because he might feel bad tomorrow? How can an 8-year old kid understand exercise intolerance when medical researchers don't even understand it yet?

I think it might be time to take Craig to see Dr. Bell. It's probably also time to talk to him openly about what's going on. We've avoided that so far, dealing with each symptom as it comes up, because we didn't want him to think of himself as a sick kid. At this point, though, he knows something's wrong, and we really need his cooperation to help prevent these post-exertional crashes. We'll emphasize to him what Dr. Bell told us last year - that he won't necessarily develop full-blown CFIDS.

This is all very difficult for me and my husband. It's so hard some days to keep a positive face on for the kids. I hope Craig is doing all right at school today and has perked up a bit. Rough day.

Wednesday, September 20, 2006


Might as well continue with the water analogies. I don't even have the energy today to tread water. I crashed big-time last night. Horribly sore throat, aches from head to toe, feels like my body is filled with wet cement.

Too much computer time yesterday? My little walk around the neighborhood? A delayed reaction to all the stress lately? I haven't felt this bad in quite awhile. Even using the laptop in the recliner is too much for today. It's a flat day.

Crahes are frustrating because there's so little you can do to help yourself. There's no way out but through it. Rest and wait...

Tuesday, September 19, 2006

Swimming Again

Craig finally turned the corner last night and went back to school this morning, so our lives are returning to some semblance of normal today. I probably overdid already today; I've just been so thrilled to have time to myself again! I've been writing all day and even took a short walk (I'm in love with grocery delivery - I can save my energy for real exercise).

I realized that I was so distraught yesterday I didn't even write about how I had titled my blog entry. My sensation of just "treading water" doesn't apply only to Craig's illness this week but to so many aspects of our lives whenever one of us is ill or crashed. It's as if the rest of the world carries on without us while we're stuck in another dimension.

I feel as if I accomplished nothing in the past 8 days. I know, in reality, that I did a lot - taking care of Craig, going to the doctor's office, helping him with schoolwork, etc. But none of that was what I had planned to do. I ignored my writing, my friends, and everything that needed to be done with respect to our house, our yard, and our finances. My world shrunk down to a tiny space.

When this happens, it's suffocating. I feel a sense of panic as the days pass and nothing gets done. We move into a kind of survival mode, just managing to do what we need to get through each day. Life is reduced to meeting our basic needs - food and rest (fortunately shelter is taken care of). It's hard to live like that for very long.

So, I'm happy to be back to living a more normal life today. We just do what we have to do to get through these tough periods, right?

Monday, September 18, 2006

Treading Water

I just burst into tears for the third or fourth time today. I’m trying to hold it together, but I’m not succeeding very well. Our 8-year old son, Craig, is still sick; he’s been flat on his back wiped out for eight days now and has missed six days of school.

I took him back to his doctor today (third time in a week). He still seems to have a sinus infection, despite the hefty antibiotics he’s taking. The sinus symptoms are actually comforting to me because otherwise, this just looks like CFIDS. We went through this same pattern over and over last year. I’m sure the school principal will be calling soon to ask what’s going on and tell me how important it is that Craig attends school.

What the school doesn’t get – and what scares us the most – is how completely incapacitated Craig is. It’s not as if we’re keeping him home from school on a whim; he is not physically capable of getting up and going to school. Despite the sinus infection, my husband and I know that there’s more to this. We can clearly see the parallels between Craig’s debilitation and what we’ve gone through with Jamie and with me.

We know that Craig is very likely to develop full-blown CFIDS. We keep telling each other we can handle it, we’ve been through it before, we know what to do this time around. It’s still terrifying.

We’re in this in-between stage right now. Craig has these horrible one- or two-week long crashes, but he’s still well and perfectly healthy 80-90% of the time. He’s not sick enough to be officially diagnosed with CFIDS, even though the pattern is obvious to anyone who’s lived with it. The school wants a written diagnosis from a doctor as to why Craig misses so much school (his absences are infrequent, but these 1-2 week blocks add up fast). Instead, we give them a collection of individual doctor’s notes that don’t really explain this level of debilitation.

I’m just babbling here – releasing a stream of thoughts because I need to let them out of my head. I’m sure that in a day or two, Craig will suddenly bounce back and be his usual energetic, bubbly little self. Then we’re back to waiting and watching – for the next sinus infection, for the next crash, for the time when he doesn’t bounce back. That sounds horribly dismal. If you’ve read this blog before, you know that’s not the way we live. We try hard to find joy in every day, to take life one day at a time, to enjoy and appreciate what we have. But somewhere just below the surface, we’re waiting and watching.

Tuesday, September 12, 2006

Thrill of Victory & Agony of Defeat

Whew, the past few weeks have been a whirlwind of activity. If I complained about summer vacation in the past two months, I take it all back! I had forgotten how hectic weekdays and evenings are during the school year.

In the midst of all this chaos - and my own mild crashes that have resulted - one thing stands out, making everything else seem trivial. Jamie, our 12-year old son who spent much of the past two years flat on his back because of CFIDS, is going to school full-time, back in band playing his saxophone, and playing his favorite sport, soccer. In other words, he's just like any other seventh-grader.

I can't begin to express the depth of our relief and gratitude. Watching Jamie go off to school each morning is a miracle. The real test came last week, when soccer season started. Jamie has played - and loved - soccer since he was 4 years old. At this time last year, he was unable to attend any team practices and was absent from school more than 50% of the time. We'd go to the soccer games each Saturday, and Ken (my husband and the coach) would put Jamie in for 5 minutes , usually as goalie so he wouldn't have to run much. Five minutes was all he could handle before he had to come out and rest again. Even that little bit sometimes caused a crash.

This past Saturday, Jamie was out there, running as hard as he could for most of the hour-long game. He'd been to two 90-minute practices during the week. He ran and kicked and even scored a goal for his team. (That's Jamie in the blue shorts and socks). I was terrified of the consequences and watched him carefully the next day for signs of a crash....nothing. It's astounding. Thank goodness for Dr. Bell, Dr. Rowe, and Florinef.

So, that's the thrill of victory. And it sure is sweet, but it's tempered by the agony of defeat. Our younger son, Craig, also went back to school (third grade) and started soccer last weekend. Craig loves soccer as much as Jamie does. After almost two hours on the soccer field Friday evening (he stayed for his own and for Jamie's practice) and his game on Saturday morning, he crashed big-time. (That's Craig fighting for the ball, in the red shorts. He also scored a goal at his game.)

When Craig said "My throat hurts so bad!" on Saturday evening, my heart sunk. He's been home from school for two days now, with the too-familiar symptoms in the same old pattern - first a sore throat, then congestion, then exhaustion and all-over aches. He's lying on the couch this morning and says, "I feel so weak I can't even sit up." Now it's very likely he'll also develop a sinus infection - typical for him when the congestion gets this bad. Seeing Craig suffering hurts with the same intensity as the joy I feel in Jamie's recovery.

This disease sucks.

Monday, August 28, 2006

Pacing and Planning

We lost our internet access this weekend. I felt so stranded! I couldn't e-mail, couldn't check the weather forecast or the school lunch menu, and couldn't blog. I'm so relieved to be connected again!

I thought a lot this weekend about the intricate strategies I employ to try to pace myself so I'll be able to do the things that are most important to me. It's a complicated dance that requires constant vigilance.

The big event this weekend was a neighborhood picnic/pool party on Saturday evening. I also had my usual list of things I wanted to get done, but I had to keep revising my plans based on how I was feeling. For starters, I took a shower and shaved my legs Saturday morning. Shaving requires a lot of extra time standing in the warm shower stall, so I was wiped out when I finished (one thing I hate about summer). So, that was about it for Saturday!

I rested most of the day and did feel pretty good for our gathering that evening. I tried not to stand much at the party, even though I felt a little silly talking to a group of standing people while I sat in their midst. I weathered the social interaction pretty well and felt good on Sunday.

Then, all my careful planning and pacing went out the window. My husband, Ken, went out to do some yard work, and I said I'd help him for a few minutes. Our yard is an overgrown jungle at the moment, and I hate not being able to do much about it. I knew I could handle 15-20 minutes of weeding, so I came out with him. Unfortunately, I didn't wear a watch, and the huge amount of work just sucked me in. I kept saying to myself, "I'll just finish this little section." By the time I came in, I was covered in sweat and dirt, my heart was pumping madly, and I knew I'd gone over the line.

I guzzled some of my son's Gatorade Endurance (double the salt) and popped some extra supplements, but I had to spend the rest of the day flat on my back, thinking about all of the other things I'd wanted to do.

I sometimes get frustrated by having to be ever-vigilant, planning every single action and activity and mentally tabulating what I can handle, but it sure beats ignoring my limits and crashing. So, today I'm back to my careful approach, resting after walking my son to the bus stop, putting my feet up so I can handle lunch out with a friend. It might be tedious to live this way, but I am living.

Tuesday, August 22, 2006

School Anxieties

My two boys head back to school next Monday. They're excited and looking forward to it, but my husband and I are full of anxiety.

It hit me hard last night, after talking to another mom about the teacher assignments that had recently been mailed. I got off the phone and tried to concentrate on the movie Ken and I were watching, but I suddenly felt horrible, like I had been punched in the gut. I tried to figure out what was wrong and realized it was wave of anxiety over the coming school year.

Both of our boys have been doing really well all summer, able to be active and play like normal, healthy kids. Jamie's improvement on Florinef has been absolutely stunning, bringing his stamina almost back to pre-CFIDS days. He's going to try going back to full-time school, a normal 7th grade schedule (he ended up taking 3 classes in school last year and the rest from a homebound tutor, dropping everything but the required academic courses).

All of this is very encouraging, and Ken and I are hopeful that this year will be better. But we're also scared, trying to ward off our feelings of impending doom. You see, we started out the past two years with high hopes also and ended up struggling through the most difficult period of our lives.

CFIDS is scary - its unpredictability, its seemingly random relapses, its sense of having no control. It's exponentially scarier when it's your kids living in its shadows. Jamie is doing very well on the Florinef, but we're holding our breath that he doesn't relapse. Meanwhile, our 8-year old, Craig, has had mild symptoms in the distinctive exertion-crash pattern of CFIDs for two years now. Last year, he ended up missing 32 days of school (not much by CFIDS standards but enough to trigger a shower of meetings with the principal). He's also had a good summer, but we're holding our breath, waiting and watching. Potential triggers of a more severe illness are everywhere - unseen viruses, unexpected stresses and exertions, even puberty. If I think about it too much, it terrifies me, knowing of the genetic timebomb ticking away.

On top of our fears for our sons' health, we dread having to deal with the school staffs again. Our never-ending meetings, negotiations, and battles last year left me severely ill. We don't want to have to go through that again.

OK...big deep breath. It's easy to let these fears take over, but it's not good for me. We have good reason to be optimistic. Both boys are doing substantially better than they were a year ago. We took steps this summer to minimize over-exertion and purposely kept these last weeks of summer easy. Both boys are returning to familiar schools (last year was a new school for both of them). I finally e-mailed the middle school today to update the school counselor on Jamie's health and his plans to try a normal schedule. Her response back was pleasant and surprisingly supportive. It's a new school year, with new opportunities.

Fear is like a poison. I can feel its physical effects on me. We just need to continue to live our lives one day at a time, focusing on our joys and blessings today and hoping for the best tomorrow.

Thursday, August 10, 2006

Never a Dull Moment

Boy, do I feel silly for complaining yesterday about my boring, slow-paced life. We ended up spending the evening at the local urgent-care clinic, tending to another round of boy injuries. Bringing up boys is a never-ending adventure!

Ken and I had just gotten dinner ready and were going to call our 2 boys in when our neighbor burst through the door with a sobbing, pale Craig (our 8-year old), holding a bloody cloth against his head. When he told us a few minutes later that he felt dizzy and cold, we knew we had to get him some immediate medical attention.

As best as we can piece together from the boys' excited recap, it seems that they and their two friends from down the street were sort of pole-vaulting across a rock-filled gully when Craig fell flat on his back (and head) onto the rocks. Yes, pole-vaulting. They got this great idea to use big sticks to leap across the ditch. As Jamie (our 12-year old) said, "It was awesome - it felt like you were flying!" Except, of course, that they don't have wings, so when our little daredevil Craig tried "Mega Gully", he ended up on his back with the wind knocked out of him.

On the plus side, a bleeding head wound and possible signs of shock get you a free pass through the waiting area at the clinic. I think the staff was also simply impressed by the range of wounds Craig was sporting - scratches, scrapes, and cuts all over his arms, legs, and back. Fortunately, he looked worse than he was. The doctor diagnosed a mild concussion and put a couple of stitches into his scalp. There were a couple of moments of confusion when I tried to explain that the huge bruise on his left arm was from last week and had already been x-rayed. Craig passed his middle-of-the-night pupil tests (that was fun) and actually feels pretty good today, other than a mild headache.

My mother thinks we have two very accident-prone children, but I have come to learn that this is life with boys.

Besides, I have a bizarre sort of perspective on this, thanks to our boys' struggles with CFIDS. I'm actually grateful that my boys are both feeling well enough to run, climb, play, and even pole-vault just like any other kids. An ocassional trip to the ER seems a small price to pay for such a blessedly normal childhood.

Wednesday, August 09, 2006


I'm suffering through a forced time-out today, just feeling yucky and run-down. I keep thinking of it as a lost day, but I'm trying to stay positive (and not quite achieving it). There is a list of important things to do today on my kitchen counter, with nothing crossed off, while I lie here in the recliner. It's one of those days where my first thought upon waking was how much I was looking forward to crawling back into bed later. There's nothing more pathetic than spending a day waiting to go back to bed (except maybe for wallowing in self-pity, but I'm not letting go now that I have a good rant going).

I've been feeling impatient the past few days. I've learned that the best way to live with CFIDS is to do everything in little steps. 5 minutes of exercising. 20 minutes of weeding. One small writing assignment. But doing things in these tiny incremements sometimes seems useless. How will I ever improve my physical conditioning doing 10 push-ups today and 20 sit-ups tomorrow? Our large yard is like an overgrown jungle right now; by the time I finish weeding one tiny area, the weeds have already begun to grow again where I started.

Sometimes I get frustrated with this slow pace. I want to jump in and do something fully for a change. This slow pace is completely at odds with my natural tendencies - to go full speed and give myself fully to everything I undertake. I suppose it's been good for me to ease up a bit on my perfectionist side, but this week I just feel like a gerbil running in a wheel and getting nowhere. Except, of course, that I can't run, so I'm more like a gerbil walking in a wheel at a moderate pace and taking frequent rest breaks. See? Even my analogies feel bogged down.

Ah, well, nothing like a good rant. I'm going to try to shake off some of this self-pity now. Hey, there is one thing I can do all-out. Time for some aggressive rest.

Friday, August 04, 2006

You've Got To Have Friends

(Can you hear Bette Midler singing in the background?)

Yesterday, I ran into an old friend that I hadn't seen in four years. I say "old" because I haven't heard from her since a few months after I first became ill with CFIDS. It was strange and uncomfortable seeing her again, and it brought back all sorts of conflicted feelings.

She and I became friends in 1999 when our oldest sons were in kindergarten together. I had just left my 15-year consulting career and was trying to adjust to my new life as a stay-at-home mom. She was an old hat at this routine, and we quickly became friends. In some ways, I felt like I was back in high school. I was the new kid, and she was the out-going, popular one surrounded by an admiring group of friends. My younger son and her daughter started preschool together the following year, and we became even closer, spending hours talking together at one of our homes while the kids played.

Then, in March 2002, I suddenly became sick. We continued to talk on the phone through those first few months, as I wondered what was wrong with me. She invited me to a party that spring, but at the last minute, I had to cancel because I was too sick to leave the house. I never heard from her again.

I was stunned and very hurt. I couldn't understand why a friend would desert me at a time when I most desperately needed support.

In fact, the same thing happened with another friend, an old work colleague. Although we lived in different states, we exchanged e-mail messages several times a day, sharing stories of our kids and sometimes even telling each other things that we'd told no one else. She hung in there with me for quite awhile, but once I was diagnosed and knew that my life now included chronic illness for good, she sort of drifted away. At one point, I tried to renew our relationship. We talked openly about what had happened, and she admitted that she felt uncomfortable with my illness and didn't know what to say to me. I tried to be supportive of her feelings and reassure her I was still the same person. We kept in touch for awhile, but she eventually drifted away again.

Over time, I've come to understand that some people just don't feel comfortable dealing with chronic illness. I know that some of my family feels similarly and would probably also drift away, if they could. I still don't really get it because I like to deal with life in a straightforward and open way, but I at least know that it's them, not me. This has been one of the most painful aspects of living with CFIDS.

I met another friend in 1999. Another mom with a son in my son's kindergarten class. Like me, she was just transitioning from being a working mom to working from home with her kids. We found we had a lot in common, and our kids became very close, too.

Her response to my illness has been quite different. I'm sure she was similarly mystified and uncomfortable, unsure of what to say. But she didn't run away. She talked to me on the phone when I was too sick to go anywhere. She left me a care package during one bad week - some flowers picked from her yard, a book, and a note. No one else has ever done anything for me like that, and I was deeply touched. She even asked me one day, "I'd like to know more about your illness. Is there any information I could read about it so I can understand it better?" That meant so much to me, with so many other people around me wanting to just pretend nothing was different.

She's been by my side during that dark first year, through my diagnosis and adjustment to a new life, and she's now my closest friend. She's come to accept CFIDS as a part of my life, as I've had to myself. She doesn't get upset when I have to cancel plans because I'm having a bad day. We can talk for hours. She shares her own problems with me, so I feel it's a two-way relationship, instead of feeling guilty for being the needy one. She accepts me as I am.

One friend like this is worth more than all the fair-weather friends in the world.

Thursday, July 27, 2006

What Happened?

So much for my little pep talk yesterday about being flexible and going with the flow. Anytime you have the audacity to think you've figured CFIDS out, it pulls the rug out from under you again to remind you who's really in charge.

Ken and I did enjoy a nice dinner at our favorite local brew pub. The food was delicious, and I even had a tiny 2 oz. sample-sized pale ale to satisfy my love of microbrews. We were driving to the bookstore after dinner, to shop for our son's upcoming 12th birthday, when I was suddenly overcome by severe abdominal cramps. Within 30 minutes, I went from feeling fine to feeling horrible, knowing I had to get home NOW.

Despite the fact that I'm in the middle of a 90-day pack of birth control pills, my body was rebelling with painful cramping and bleeding. This has never happened to me before - another first for this crazy disease that wreaks havoc with your hormones, as well as all your other bodily systems. I drove home as quickly as I could and collapsed onto the couch, exhausted and achy.

I slept for 10 hours last night but woke up feeling completely exhausted. My limbs felt like they were filled with wet cement, and I couldn't seem to keep my eyelids open. I finally gave up and burrowed back into my pillow, unable to sleep anymore but also unable to get up. A t-shirt logo kept running through my head: "Some days it's not even worth chewing through the restraints." I've always found it amusing before, but today it just felt accurate.

I did eventually get out of bed, and breakfast helped a little, but I felt as if I'd been awake for 2 days, instead of 2 hours. I gave into the exhaustion and gave up my plans for the day - what else can you do?

I felt much better after my nap and even managed to grab a few things at the grocery store (although an unexpected wait at the seafood counter almost did me in again). Whew.

I have no idea what could have sparked this peculiar crash. In fact, yesterday was the most restful, stress-free day I'd had in months!

Wednesday, July 26, 2006

The Afternoon Slump

No matter how good I may feel when I start the day (and I am fortunate enough to have a fair share of "good days" now), I always feel crappy in the afternoon. This daily slump is really getting old. I have this pocket of useless time every single day. I've often wondered whether other people with CFIDS have similar daily energy cycles, and if there's anything I can do about it.

I learned long ago that I can best manage to live my life with CFIDS if I stick to a predictable routine. My doctor told me this when I was first diagnosed, and, much to my frustration, I've found she was absolutely right. Spontaneity became a thing of the past.

My routine is all about rest. I know that I need a good 9 hours of sleep at night to feel decent the next day. I have also learned that those lazy weekend mornings in bed that I enjoyed pre-illness (and pre-children!) won't work anymore. I have to get to sleep early each night because I wake up at the first sign of morning light. My husband, Ken, complains about the cave-like quality of our bedroom. My only hope of sleeping to 7:30 or 8:00 am is to obsessively shut out all light. We have room-darkening shades, and I even have to close the doors to the hall and the bathroom.

Even if I wake up from "the cave" feeling great, by early afternoon I'm ready to lie down again. I take a nap every day. When I first got sick, I avoided mid-day resting unless I felt really bad, but I soon learned that by the time I feel bad, it's too late to stop the freight-train of a crash. The power of preventative rest in CFIDS is amazing. Taking that daily nap allows me to feel good through the evening, so I can enjoy some time with Ken and the kids and even stay up until 10 pm (ooh!).

Even though I feel much better with my nap than without it, I often wake up feeling rotten. My mouth is dry, my legs ache, and I have no energy. I end up having to go lie down on the couch to rest from my nap!

The really stupid part is that I still sometimes try to make plans for my afternoons. Today, in a fit of feeling good and having the freedom to do anything I wanted, I looked through my favorite cooking magazines this morning and made all sorts of plans for delicious dinners to make for Ken and I this week (stuff the kids would never eat!). I figured I'd run to the grocery store after my nap. Duh! Now the store (and the dinner) will have to wait until tomorrow.

Oh, well. Besides routine, the next most important part of managing CFIDS is flexibility. So, I called my husband at work and made plans to meet him for dinner at a favorite restaurant. I should feel well enough by then to manage it, and I can hit the grocery store tomorrow (in the morning!). Hey, wait a minute...this is spontaneous, isn't it? You just gotta go with the flow.

Tuesday, July 25, 2006

Shhh...What's That Sound?

It's silence - something that's been in short supply since summer started. I drove my two sons to my mother's house in Connecticut yesterday and just returned this afternoon (the three-hour drive now requires a significant rest period before attempting the return trip). The boys will spend the next six days on a sailboat with their Gramie and Pop Pop - pretty much a perfect week for them.

I know that I'll miss them (I already do miss their hugs and sweet affection), but right now I'm relishing the solitude. Our sons bring incredible joy to my life, and I sincerely enjoy spending time with them, taking walks, playing games, cuddling together for movies. Kids are also a huge responsibility, though, and it is such a huge relief to me today to be responsible for no one but myself. What a strange feeling!

When I got home, I reheated left-overs for myself for lunch - no special requests, no extra work, no pile of dirty dishes. Then I took a long nap, without worrying about what time I got up or what was going on while I slept.

My husband just got home from work, and we're really looking forward to some quiet time alone together. We can eat whatever we want, talk about whatever we want, and even watch a movie together before 9 pm! OK, maybe it's not the wild partying of our younger (and healthier) days, but this is exciting for us.

Best of all, there is no background noise of non-stop quotes from Spongebob Squarepants and pretend pirate battles. We will dine this evening without once saying, "Boys, stop repeating that!" Ah, this is living.

Friday, July 14, 2006

Remember Who's Boss

The Boss? CFIDS, of course. I feel strongly about being myself and living my life, but I've learned again and again that I must stay within the limits defined by this disease or I'll end up unable to do anything at all. It's ironic, really. The only way to maintain any degree of freedom in your life with CFIDS is to live in a very careful way, always being ultra-aware of symptoms, activity level, and limits.

I got cocky this week and forgot that basic lesson. My energy and stamina have seemed a bit improved the last month or so, and I let down my guard, allowed myself to be less vigilant.

I've been running around like mad all week - grocery shopping, kids' orthodontic appointments, bank, post office, etc. I've also been cooking (and cleaning up) three meals every day. Even breakfast and lunch have been more elaborate than usual, as I've been trying to make some special things to help Jamie get through his two-week trial without dairy. It all caught up with me yesterday, but, even then, I ignored the signs (mild sore throat, exhaustion, sleep problems) and kept going.

By bedtime last night, I realized I had pushed too far, and this morning, I made sure to pay close attention to how I felt, instead of ignoring it. I'm trying to keep a positive attitude. Today is a day off. No to-do list. No errands. OK, I did make French Toast for the kids and their friend who slept over, but I've spent the rest of the morning propped back in the recliner, reading the paper, using the laptop (a bit), and even zoning out with a little TV (Food Network - yum!).

Sometimes, you have to get back to, feet up, lots of fluids. My boys will be pooped out from their sleep-over, so we'll all take naps this afternoon and take it easy. Slow and easy.

Tuesday, July 11, 2006

Summertime...and the Living is Easy

Well, it's mostly easy. It's very nice not to worry about school schedules, homework, sports practices, etc. I wasn't feeling too well this afternoon (went to dinner with friends last night), and it's great to be able to just take it easy when I need to.

True, I don't get much accomplished with my two boys around all the time, but when I can arrange for friends to come over, they're all old enough to keep themselves occupied. Right now, there are three muddy, sweaty boys in our basement, playing a board game and sucking on popsicles. They spent two hours out in the woods behind our house, playing in the stream, climbing on rocks, and swinging on vines. Great summer stuff!

They should cool off quickly down in the basement, where the temperature is cold enough for polar bears. That's the part I hate about Delaware summers - the heat and humidity. We had an unusually mild week last week, but now we're back to 90 degrees and humid. I grew up further north (Rochester, NY) where summer temperatures usually stayed in the 80's, with nice, cool nights, and I have never adjusted to the more southern heat and humidity, despite several years in New Orleans.

It's worse now, with CFIDS. My whole body temperature seems to have risen in the past couple of years. I used to be the cold one in the house, always piling on the blankets and sneaking to the thermostat to turn the temperature higher. Not anymore. I have a closet full of warm sweaters that didn't get worn at all this winter and rarely pull more than a sheet over me at night, even with our air conditioning on. It's crazy! Even though I need it more, I still don't like to live in air conditioning. I'm a fresh air girl. So, you can see, I'm kind of stuck here. I'm out on our shaded porch for now but will soon have to escape back to the A/C.

All of that seems like silly complaining, though, considering how well this summer is going. Ken and I are incredibly grateful that both of our boys are feeling so good and are able to enjoy their summer. These classic summer days of playing outside with friends seemed like an impossible dream six months ago. So, I guess the living is easy....

Thursday, July 06, 2006

I'm Back!

Jamie and I on top of the world in Shenendoah National Park

We returned from our vacation this week (you can see pictures at our vacation blog)
. It was a wonderful trip, one of my best since getting CFIDS. I felt relatively well most of the time and had no major crashes. Hurray! Road trips actually work out very well for us. Even if I've been pretty active, I'm guaranteed plenty of time off my feet every day in the car, and even the boys will take naps every day while we're driving.

Best of all, both of our boys are doing well. Without the mental exertion of school, both of them have plenty of physical stamina. So far, they've been able to do whatever they want this summer. Today they're running around outside with their friends, playing tag. We are incredibly grateful for such normal kid moments. It's a big relief after some of the difficult ti
mes they've been through. Thank goodness for Florinef!

Jamie, our 11-year old, has decided to try another dairy-free test. Although he's been great overall, his GI symptoms have gotten worse. It's finally bad enough that he's prepared to try going without his precious milk and ice cream, at least for a little while. I don't know if this will help him, but giving up dairy greatly improved - almost eliminated - my own GI symptoms, so we'll see what happens.

We had a wonderful vacation, but it's also nice to be home again.

Digging for diamonds in Arkansas

Tuesday, June 13, 2006

Back on My Feet

Wow, that was one heckuva crash this time. I was pretty much bed-ridden for a full week. I'm finally feeling better and back on my feet...just in time for our vacation! We're heading out on our annual summer road trip, driving to Oklahoma to visit my husband's family. We're taking our camper along and making lots of fun stops along the way. We can't wait! Now we just need to finish getting packed...

I'll resume writing when we return.

Thursday, June 08, 2006


I've been severely crashed all week. I almost feel like Rip Van Winkle, except that I haven't woken up completely yet.

This week was supposed to be b
usy and fun - the last week of school, time to welcome summer. I have a long list of things I wanted to do to get ready for our vacation next week, get gifts together for Father's Day, and wrap up the school year. Instead, I've been in bed for days. I don't feel much better today, but I couldn't stand it anymore. I took a shower and am attempting to tap out a short blog on my laptop.

How can the CDC use words like Fatigue and (my favorite) Malaise to describe this complete debilitation? When it gets this bad, I am a prisoner of my body. I am too weak to walk, sitting up makes me sicker, and my throat hurts horribly. All those medicines and supplements I take seem to do nothing when I crash. I really hate this helpless feeling. Nothing to do but lie down, rest, and wait.

I've reached the end of my tiny bit of stamina. Time to close the laptop and lie down flat again. I just keep reminding myself that it will lift soon.

Thursday, June 01, 2006

Exciting New Viral Evidence

It just makes my day to check my e-mail and find exciting new breakthroughs in CFIDS research!

They've identified a new virus that may be behind CFS. As a bonus, they think it's also the cause of MS, so CFS is linked to a "real", well-known disease in the news report.

Check it out:

Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy

Tuesday, May 30, 2006

How Much Do You Tell?

Living with CFIDS, I frequently wonder who I should tell about our illnesses and how much I should say. There's a careful balance between telling the right people enough information so they'll understand what they need to without overwhelming them.

We had a wonderful treat this weekend when my closest childhood friend, Michelle, came to visit us from Ohio with her family. Michelle and I met when I was five years old and she was four, and we were inseparable all through our childhood and teens, even after her family moved out of our neighborhood. We've kept in touch as adults but only get to see each other about once a year, so we thoroughly enjoyed this weekend. Our kids had a blast together, and Ken and I had a great time talking and laughing with Michelle and her husband, Tom.

At one point, though, I began to worry that we were sharing too much about the challenges of our illnesses. That may sound silly since they're good friends and we talked in-depth about a lot of things, but I didn't want to bore them with details of our school battles or alienate them or make them feel sorry for us. A bit of empathy and understanding is always nice, but sometimes I see a look of pity in someone's eyes, and I know I've said too much. I guess there's also an underlying fear that if I talk about illness too much to my friends, I'll scare them away. It's not just paranoia; I did lose some friends when I first became ill.

On the other side of the coin, I was talking to the mom of one of Jamie's best friends yesterday at our local pool. I mentioned that Jamie was attending all 5 of his classes these last two weeks of school and was feeling really well lately. She said that she never realized he had an illness until recently. Jamie and Craig play with her son all the time, and I thought I had filled his parents in on Jamie's limitations from that very first sleep-over. I guess I didn't.

Certainly, I need to provide some information to parents of Jamie's friends if he's going to be at their houses, but how do you know how much to share? At our Mardi Gras party this winter, a friend asked how Jamie was doing, and I was happily sharing the news of his improvement on Florinef when I realized that some of our friends were listening with a look of mixed horror and pity. I thought it was great news that he could now attend three classes a day, but these other parents were obviously distressed to hear of the extent of his debilitation compared to their normal, healthy kids. And these were close friends.

Even harder, how much do you tell acquaintances? The parent of a not-so-close friend who's invited Jamie over to play, the members of my book club when I bring my own foot rest and have to leave our meetings early, other parents at school who look at me funny when I have to sit or put my feet up while they're rushing around helping, the kind neighbor who asks how I've been...what do you say?

Part of this conflict is also due to my fervent desire to help educate the general public about our often-misunderstood disease. I want people to understand that CFS is not some silly designation for wimpy people who feel a little tired, that it is a serious and debilitating illness that deserves serious research funding and respect from the medical community. The need to educate feels especially urgent when people say things like, "But you look great!" or "He always seems to have so much energy." I feel compelled to explain these seeming paradoxes and to tell skeptical doubters what our bad days are like.

So, I'm constantly trying to balance my need to explain and to educate against the fear that I'll drive away those closest to me. How much do you tell?

Monday, May 22, 2006

More School Woes

Once again, the staff at my son's middle school have brought me to tears.

Jamie's homebound tutor (who handles two of his classes at home for him) thought that Jamie could handle attending all 5 classes for these last two weeks of school, and I agreed. He'd be able to participate in all of the end-of-year review and be better prepared for final exams, plus he'd be there for the fun stuff at the end. I talked to the coordinator at the school, and she said OK. So, I thought it was no big deal (I should have learned by now that everything at this school is a big deal). I sent an e-mail to the two teachers involved, just to let them know that Jamie would be back in class for the last two weeks. The coordinator at school responded to me in a scathing tone that she was "shocked" that I would send a "directive" to the teachers, blah, blah, blah.

It's been like this all year. I'm so sick of being constantly attacked and misunderstood. Every little aspect of Jamie's schooling has been blown into huge conflicts since the start of the school year. It's exhausting. In fact, all this conflict and stress has been the source of several severe crashes for me this year.

My husband and I are nice people. Our boys are kind and courteous and are both excellent students. We're only trying to do what's best for our son, trying to understand the proper processes, just trying to get through the year. It's horrifying for me to think that some of these teachers and staff members obviously perceive me as an overbearing, meddling parent. I try to be a good person, and I want other people to like me (perhaps one of my downfalls!). I hate all this conflict.

Our experience at our son's elementary school last year was just the opposite. Led by an intelligent and compassionate principal, the entire staff approached Jamie's illness in a friendly, cooperative way - just as we approached them. We've been continually stunned by the middle school's adversarial approach this year and blind-sided by every battle.

I'm sick of battles. I'm sick of constantly having to defend myself and to fight for what's right for our son. I just want to throw up my hands and say, "OK, you've won! Do whatever you want."

It seems so unfair that we should have to deal with all of this, in addition to dealing with a seriously ill child. I guess it's similar to some of the battles with medical people and disability services that I've heard from other people with CFIDS.

Saturday, May 20, 2006

These Are a Few of My Favorite Things

Last week when I was severely crashed, I managed to keep my spirits up most of the time with an attitude of "this will pass," but by the end of the week, when I felt worse instead of better, I slid into the quicksand of self-pity and mourning that so often accompanies chronic illness. I found myself thinking too much about all the things I can no longer do, all the limitations in my life, all the can'ts.

Back to nor
mal (for me anyway) this week, my spirits are revived, and I'm trying to focus more on the things I can still do. Here are some of the things that bring me joy and make me feel good:
  1. Being outside, especially in the sunshine
  2. Camping
  3. Taking a walk - something I used to take for granted that I now relish on my better days
  4. Spending time with my niece and my new nephew (holding a baby can cheer me up no matter how low I'm feeling)
  5. Losing myself in a really good book
  6. Watching a funny, uplifting movie (some of my favorites are Elizabethtown, Love Actually, and As Good As It Gets)
  7. Listening to favorite music
  8. Laughing with my husband
  9. Going on road trips with my husband and kids, cocooned in our car and our camper and living at our own pace
  10. Talking and laughing with good friends
  11. Being at the beach - I love the salt air, the wind, the sound of the waves
  12. Hiking - our hikes are shorter than the old days, but I'm grateful I can still enjoy the outdoors with my family
  13. Playing games with family and friends
  14. Writing, when I'm "in the zone" and the words just flow
  15. Re-telling old stories with my family and laughing so hard we can hardly catch our breath
  16. A quiet, clean, uncluttered house
  17. Anything with my two sons (even though this one directly contradicts the last one). Just being with them makes me feel good.
I'll look at this list the next time I'm feeling bad to remind myself of all the joy in my life!

Monday, May 15, 2006

Out of the Abyss - Again

I feel as if I've just woken up from a week-long coma. I haven't felt good in several weeks, but I was coping. Then, last Monday I went into a severe crash - one of my worst ever - that lasted a full week. I spent most of the week in bed, too sick to even read or watch tv.

I feel the need to document this lost week, so I won't forget what it's like and what I'm fighting against. I also want to remember how much other people with CFIDS are suffering. Whenever I crash badly like this, I think constantly about all of the people who feel that bad every day. I know I am lucky to have periods where I can still function, even if it's only 60% of how I used to function. I am appalled and amazed at the thought of so many people, all over the world, who cope every day with the kind of debilitation I experienced last week, being housebound or bedridden and feeling unable to escape.

My one week seemed unending. We spent the weekend at my Mom's house in Connecticut, along with my sister and her family, to celebrate Mother's Day. I was struggling to get through the weekend, but by Saturday night, I hit rock bottom.

I hurt all over, felt exhausted but couldn't sleep, and no longer had the strength to keep my spirits up. I crawled into bed and sobbed. After a week of suffering, with no end in sight, my mind was in a near-panic state, all optimism forgotten. Terrified thoughts bounced around in my head: "I can't take it anymore. Nothing can help me. I just want to escape." I stumbled into the room where my boys were sleeping, to remind myself of what I was living for, what I was fighting for. I said a silent prayer that it was me suffering so much this time and not either of them.
Desperate for any comfort, I gently removed one of their many stuffed animals from the bed. I went back to my own bed and resumed my tossing and turning, clutching the tiny beanbag dog like a life raft. Benadryl and Ambien finally won out over my pain, but I felt as if I was only half-asleep all night. My body hurt wherever it touched the mattress, so I was constantly moving around to try to get comfortable. I awoke in the morning no better, still in a fog of pain and exhaustion, still feeling as if I could not live with this illness a moment longer.

By the time we got home last night, I felt good - not just better, but really good for the first time in weeks. It was like being reborn. I felt like myself again.

What makes this crazy illness turn itself on and off? It's maddening to have no control, to be so helpless. During my crash, I tried everything to make myself feel better. Meditation, gentle yoga, lots of rest, extra supplements - all of these things will normally help me. None of them are miracle cures but each thing helps a little bit. Not last week. Nothing I did made any difference at all. It didn't matter how much I rested, I always woke feeling even worse. Maybe this crash was triggered by allergies (my eyes hurt horribly last week), maybe a virus made my immune system go into overdrive, maybe all the storms last week affected me. What does it matter if there's nothing I can do about it?

As important as remembering the extent of my suffering, I also want to remember what it feels like when it ends. I was elated last night by the simple, normal feeling of having energy - just normal energy like most people have every day. I could sit up, I could take care of my kids, I could sleep without heavy sedation. What a gift!! I am so thankful today to feel "CFIDS-normal" that just writing about it brings tears to my eyes.

To all those people out there who suffer so much every day, my thoughts are with you. I admire your courage and will do all I can to help move research forward for myself, my children, and everyone else suffering from this horrible disease.

Tuesday, May 09, 2006

We Are Here, We Are Here! *

(* Dr. Seuss in Horton Hears a Who)

Just like those tiny Whos living on the dust speck in Horton Hears a Who, all of us with CFIDS must speak up and let our voices be heard by those who have the power to save us.

Today in the U.S. is the 14th Annual CFIDS Association Lobby Day, when 90 participants are visiting members of Congress to ask for increased funding for CFIDS research. I had planned to join them but had to cancel when I realized I wasn't well enough to manage the short trip to Washington. Friday is International CFIDS/ME Awareness Day.

I am severely crashed today. I've spent all day in bed, which is very unusual for me. I am in the process of using up every precious drop of energy I have today so that my voice will be heard, even though I couldn't make it to Washington.

My health and my life - and the lives of my children - are at stake. I work very hard to accept my life of limitations and make the best of it, but I desperately want to get better and want my boys to be able to live normal, healthy lives. Nothing will happen without more money for research and more attention from the government.

Go to and click on the Grassroots Action Center to send letters to Congress and others with the power to change our lives. It's automated and only takes a few moments. I took a few extra minutes to add a couple of paragraphs about the impact of CFIDS on our own lives.

Go do it now. If you live outside of the US, take 10 minutes to write a letter to the editor of your local newspaper about ME/CFIDS Awareness Day.

Our representatives need to know that those 90 people at Lobby Day today each represent another 10,000 of us with CFIDS who couldn't be there.

We are here!

Monday, May 08, 2006

Yearning to Be Normal

" My body is suffering, my mind is sometimes neurotic, but my soul is at peace."
- Dr. Dan Gottlieb, on Fresh Air with Terry Gross

This statement caught my attention today as I scanned through radio stations during my 10-minute drive to pick Jamie up from school. Dan Gottlieb is a psychologist who hosts a radio program, Voices in the Family, on our local NPR station. I've heard his show once or twice, enough to recognize his voice, though my husband and I always joke that his show is sort of depressing, as in, "Let's talk about pain and suffering."

Today, NPR was replaying an interview of him by Terry Gross, host of a really great interview show called Fresh Air, and I learned something surprising. It turns out that Dr. Gottlieb is/was a quadriplegic, injured in a car accident twenty years ago (he's now partially recovered but still in a wheelchair). He's just written a book, Letters to Sam, imparting life lessons about being different to his grandson who suffers from autism.

I just loved his statement about his body hurting but his soul at peace. That's what I aspire to achieve (well, I'd love to skip the body suffering part, but you can't have everything). Plus, there's nothing like hearing about someone worse off than you to shake yourself out of any thoughts of self-pity. He was a quadriplegic and is now in a wheelchair...and I think my life is filled with limits??

Terry asked if he ever just falls apart, since he always seems so together. He said that one day when he was driving his specially-adapted van, he passed a guy jogging along the side of the road, and he just burst into tears and had to pull over. It was an every-day sort of thing to see, but it just hit him a certain way.

I don't for a moment think that living with CFIDS is on a par with life as a quadriplegic, but I've had those moments, too. In fact, seeing someone running can hit me hard, too. I mean, I could run, but I'd suffer for it for many days. I try so hard to just keep living my life, focusing on what I can do, and finding joy in everyday stuff, but sometimes the yearning to be normal can hit you like a punch in the gut.

Thursday, May 04, 2006

More of the Same

Wow, it's been a week since I've written here. That's unusual for me; I am usually brimming with thoughts and words. I guess my silence has been due to a feeling that there's nothing new, just the same old routine. I haven't felt inspired to write about it and certainly doubt that anyone would want to read about it.

It's been a relatively rough week physically. I had a few days of being severely crashed,unable to do much of anything, and the rest has just been feeling not-so-good. Who knows why this time? The weather? Allergies? Lingering effects of my over-activity last week? I'm bored with trying to figure it out yet again.

Emotionally, my impatience with the same old stuff has been punctuated by flares of stress. Even that is the same old routine, though - mostly school issues, worrying about another round of standardized testing next week, frustrated by my unreturned calls, another round of calls and concern from my younger son's principal over his excessive absences.

That's probably the source of much of my stress (and probably the long crash, too). We have been focused on our younger son, who missed another couple of days of school this week. We thought last Friday that he might have strep throat or an ear infection (i.e. something normal and treatable), but the doctor told us the same old story: he feels feverish but he doesn't have much of a fever, his throat hurts horribly but it doesn't look too bad, no sign of an infection or other reason for his feeling so horrible. Sound familiar? It was clearly a crash brought on by last week's over-ambitious activities.

We did get some hopeful news. I explained Craig's situation to Dr. Rowe, the pioneering doctor at Johns Hopkins who first identified Orthostatic Intolerance in people with CFIDS. As in the past, he responded quickly and thoroughly to my e-mail. He thinks Craig's chest pains are related to OI and that treatment might help. So, the bad news is that it's probably time to get Craig officially diagnosed (at least with OI), but the good news is that we may be able to help him feel better. Who knows - maybe early treatment of the OI will prevent or slow the typical downward spiral of dysfunctional systems in CFIDS.

I'm very grateful that tomorrow is Friday, and this same old week is almost over. I'm ready to start fresh and feel better.

Thursday, April 27, 2006

Oh, but we do have fun!

Yes, that's me, my youngest son, Craig, and my husband, Ken, wearing togas. The last few days have been hectic and crazy but lots of fun. It's been one of those weeks filled with school projects and functions, requiring non-stop activity. And, yes, I'm crashed today, but it was worth it. The kids had a blast, and so did we.

On Tuesday, we kicked off our odyssey with the usual school-day stuff, plus an orthodontist appointment, my Mom arriving on the train, and Craig's spring concert at the elementary school. But the real scramble came on Wednesday.

It was Greco-Roman Night at Jamie's middle school. The 6th graders had to make a recipe from Ancient Greece or Rome and bring it to school to sell in a bazaar-like atmosphere to raise money for an end-of-year activity. Jamie and his best friend, James, chose Shrimp in a Honey Glace (which I encouraged due to its quick preparation!) and also sold iced mint tea.

Now, we're not ones to do things half-way, so when the instructions said to wear a costume, we of course assumed it applied to the entire family. My Mom and I spent the day figuring out how to fashion togas from fabric we bought on the $1 table at the fabric store. Ken picked Craig up from soccer practice, stopped at home long enough for me to wrap them up, and the five of us headed to the school.

Would you believe we were the only adults, among the families of 300 students, who dressed up? You might think we'd be embarrassed, but we got into the spirit of the evening and had a great time.

So, today it's payback time. The middle school gathering had all of the characteristics that someone with CFIDS fears most: big crowd, warm room, lots of noise & chaos, and a full hour of stan
ding with no chairs available. I had pulled through the previous days' high activity by shutting myself in my dark room several times a day to nap or meditate, and I made it through Greco-Roman Night. By 9 pm, though, I was in bad shape. I had so much pain in my legs and back that I thought I'd never fall asleep (thank you, Ambien!).

I'm in recovery mode today, not trying to accomplis
h anything and lying down as much as possible. All things considered, I'm not doing too badly. And we have more happy, laugh-filled memories to add to our family album.

Saturday, April 22, 2006

A Life of Contentment, with Pockets of Despair

I have always loved my life. Perhaps that sounds like hyperbole, but it's not. At every stage of my life, I have thought that my life was pretty much perfect. I have always felt fortunate and blessed. Oh, sure, I had problems, just like anyone - the usual high school angst, nasty break-ups with boyfriends, overwhelming times at work, difficult colleagues - but these always seemed like minor detours in an otherwise happy journey.

There have been times throughout my life when I have felt so utterly content that it almost scared me. I felt so fortunate, so blessed by my perfect life that I would occasionally think that it couldn't last. A person couldn't possibly have such a happy life without some kind of major challenge cropping up. I mostly felt content and satisifed, but there was a tiny part of me that was waiting for the other shoe to drop.

And then, of course, it did. On March 2, 2002, I suddenly became ill with the "flu" that never goes away. It would be a full year before I was diagnosed and understood that I now had a truly chronic illness, with no known cure. Like so many other people with CFIDS, my life now seemed neatly divided into "before" and "after." I dealt with some serious depression in those first two years, something that stunned me. I had rarely even felt unhappy before, so I was completely unprepared for the dark curtain of despair that seemed to be taking over my life.

Those days are thankfully behind me, but I am still sometimes ambushed by small pockets of despair. I am mostly still content with my life, perhaps even more aware of and grateful for my blessings. I often tell my husband that, despite the challenges we're now living with, I still love my life. I still feel blessed by him and our boys and still find joy in every day.

Sometimes, though, like last night, my symptoms worsen and my contentment is drowned by a wave of despair. I think that I can't live with this illness any longer, that I can't possibly go on coping with the battle inherent in every moment of every day, that it's just too much. I sob for all that I've lost and for the unfairness of it all.

That overwhelming darkness always passes, usually fairly quickly, but those feelings remain as a black spot on my otherwise happy life, never far from my consciousness. I've come to realize that my life has never really been perfect. My contentment is more the result of my outlook rather than some unusually good fortune. I can still carry that optimism and joy with me now, even in the shadow of this never-ending disease. The battle is not only in my body, but in my mind, as I struggle against feelings of self-pity and helplessness and try to hold tight to my life of joy and contentment.