Party Girl

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

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

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

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

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

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

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

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

School Daze

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

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

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

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

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

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

Summer Fun

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

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

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

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

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

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

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

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

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

Back Home Aagin

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

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

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

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

Back on Track

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

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

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

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

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

Feeling Blue

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

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

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

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

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

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

Update on Genetic Study

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

Kids' CFS Update

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

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

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

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

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

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

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

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

CFS Genetic Study

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

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

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

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

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

Wonderful Weekend

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

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

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

Where Did the Week Go?

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

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

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

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

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

The Sound of Silence

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

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

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

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

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

A Crash-less Month

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

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

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

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

Summer Living

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

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

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

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

CFS in Redbook

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

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

Back Home!

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

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

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

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

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

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

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

News From Oklahoma

We’re a week into our vacation, spending a week at my in-laws house in Oklahoma. As you may have seen at our travel blog, we’ve visited some unique and wonderful places on the way out and have enjoyed camping and hiking. We also enjoyed meeting up with some friends in Arkansas that we met through this blog!

It’s always interesting to me to see that I typically feel pretty good while we’re on vacation and rarely experience a crash, even with the physical exertion of walking and some short hikes. That tells me that the stresses and exertion of normal day-to-day life wear me out more than light exercise. The kind of traveling we do is good for me, too. We take these long car trips in part because it’s too expensive to fly out here to see my in-laws, but we also really enjoy our road trips, and it works out well for me and my older son (my younger son’s CFS is well-controlled with medication). We might hike one day, but then we spend the next day in the car – forced to stay off our feet. We nap, we listen to audio books or favorite music, and we look for unique places to stop for lunch. It’s a slow rhythm - certainly slower than our normal pace of life - that’s good for us.

In fact, yesterday was the first day I’d felt a little worn out. At first, I thought that was strange. After all that walking and hiking I’d done in the past week, here I am at my in-laws house – they’re in their 80’s – and I never even left the house yesterday! But then, I realized, I’m back into housekeeping mode here – planning meals, cooking, dishes, lots of laundry, etc.

I’m also struggling a bit with my Lyme treatment right now. I made the stupid mistake of just packing my probiotic with the rest of the medications (in a big backpack in the car). I think the heat killed off all the good little bugs, so my stomach has been in terrible shape, and I’ve had to skip a dose or two of antibiotics here and there to give my GI tract a chance to heal. Ken found me some non-dairy probiotic at the drugstore yesterday, so hopefully I’m back on track now. Once we leave here and start camping again, I will definitely keep it in the fridge.

Our visits here have been tough the last year or so, since my mother-in-law went into a nursing home. Her Parkinson’s has her mostly immobile now, confined to a wheelchair and unable to even talk much (Parkinson’s makes it hard to project the voice and be understood by others). She’s such a good, sweet woman. She heartily welcomed me into the family when we married and has always treated me like a daughter. It’s hard for all of us to see her so frail and unable to even communicate well. We try to bring her back to the house as much as possible while we’re here, but she can only stay a couple of hours at a time because she can’t get to the bathroom on her own. We hate that we’re usually 2000 miles away and can’t be here more often.

Well, time to leave the lovely wireless internet at Panera and head back to the house to make dinner. It’s been fun being back in the blog world for a few minutes!

On the Road Again...

Time for our annual summer road trip! We're taking our pop-up camper and heading out to Oklahoma to visit Ken's parents, then onto Colorado and Rocky Mountain National Park, plus lots of fun stops along the way!

I'm pretty wiped out at the moment from days of pushing myself to try to get everything done in time. There's still a lot to do tonight, but by 9 am tomorrow, we'll be on the road (hopefully) with nothing to do but relax and enjoy the trip - I can't wait! We've got the camper filled with more food than we can possibly eat and a big stack of audio books.

If you want to follow along on our trip, check out our trip blog. Right now, last year's trip is still posted, and we'll start to post new photos tomorrow.

Ready to hit the road!

Stay the Course

I went to see the Lyme specialist today. After driving 90 minutes there (and later, 90 minutes back), his message was pretty simple. He said, "Well, I guess you should just stay the course for now."

You know how I like my data, so today I went in with my graphs and charts updated! I track how I feel each day with a simple scale of 1 to 5 (5 being very sick and 1 being well/almost "normal"). It showed pretty clearly how Lyme has affected me. Last year at this time, I had racked up several months of feeling quite well, averaging 2.1, after starting low-dose naltrexone in March 2008. Lyme plunged me down into the 3's, 4's, and 5's.

In February 2009, my symptoms had cleared and I went off the antibiotics (I was at about 2.2 in February, very close to my pre-Lyme condition). Then, as most of you know, my symptoms returned, I went back on antibiotics and went through another 2-month long herx, with way too many 4 and 5 days that confined me to the couch.

My graph clearly shows steady improvement now, but I'm not yet back to pre-Lyme levels. I haven't had much knee pain, but my overall fatigue and reduced stamina are still worse than before.

So, definitely making progress but not there yet. And, although I hate being on such high levels of antibiotics for so long, I'm going to be pretty hesitant to go off again, until I'm completely sure the Lyme is gone (no way to be really be sure, though). I just don't want to go through a fourth herx reaction from restarting again!

So, no big news. But I'll take slow, steady improvement. Just stay the course.

(check out my past post for more information on CFS and Lyme).

My Secret Life

I survived! I attended my board meeting on Tuesday, just like a real grown-up. By 3 pm when I left, I was totally wiped out. When I got on the train, I was so desperate to lie down that I curled up on the seats for a nap. I was pretty tired yesterday but not badly crashed. The muscles in my feet are still sore from wearing low heels (i.e. girly shoes)!

During the meeting,it occurred to me that no one at the crowded conference table knew about my illness. There used to be a few people on the board that knew me before I got CFS and knew how it had changed my life, but they have since retired or moved on.

One of my colleagues was asking me about another guy who used to be on the board with us. I mentioned that I had forwarded a consulting lead to him that I couldn't handle. He laughed and said, "Well, I'm sure you COULD have handled it, you just didn't want to, right?" I just sort of laughed and dropped it, but I was thinking, "No, I really couldn't handle even a single day of ordinary consulting work." By the end of the meeting, I could tell I was reaching the outer limits of my stamina.

It's so surreal to be among people who have no idea that I normally spend my days lying down with a laptop balanced on my lap or that I need a nap every day. It's like I have this secret life, and one day a year I pretend to be normal. It's especially strange to me because I've always been upfront about my illness and my limitations. It just hasn't come up in these once-a-year meetings since the new personnel took over.

I've written about this feeling before, in social situations, in Living in a World Apart and News From Planet Jackson. At this point, most people in my every day life know about my secret life, though I think that few people truly understand how different our lives really are.

Crazy Week

Today was supposed to be my day of rest to get ready for a crazy week, but I've had non-stop computer problems all day! This means that quick, simple tasks have turned into lengthy, difficult tasks. My laptop is FULL - I mean really full. I keep getting these dire warnings about disk space, and I move big files like pictures and movies to a storage drive, but within a week, the messages come back. Bottom line is that all of our computers are old (ancient in computer time) and we just don't have the extra money to upgrade right now, so we struggle along. Meanwhile, there's something wrong with my e-mail and restarting the computer and modem isn't doing the trick, so I still can't send e-mail. I feel stranded!

Anyway, I got the laptop going again after deleting a bunch of files, so I'm lying down at least. What a week we have ahead of us!

Jamie has 4 final exams this week. During the weekend, he went to 2 parties, played soccer Saturday morning, and marched in a parade with his school band Saturday night. A healthy kid would be wiped out after that. Jamie was a complete zombie by last night. Such is the life of a high school kid. Fortunately (and amazingly), he rebounded pretty well with a good night's sleep and was able to go to his last day of classes today.

As for me, tomorrow is my big day. I'm going to an annual board meeting in NJ, the last vestige of my old career in environmental management consulting. It's the one day all year when I pull on my one remaining suit, sit in a business meeting, and skip my after-lunch nap. As you can imagine, it's that last part that's toughest! I take the train there and back so I can at least rest a bit on the way home, but it's a long day for me.

Besides all that, we have a bunch of end-of-school activities at Craig's school (he has 7 days left) and the last week of soccer practices and games.

Well, I'm really not feeling very good today, so I should sign off and really rest. Big day tomorrow!

Learning To Let Go

Thanks to everyone for the wonderful support earlier this week when I was feeling so overwhelmed. Two things have helped me to relax a bit.

First, I really appreciated the suggestion to forget my overwhelming to-do list and make a separate list of only what MUST be done before our vacation. I actually use this strategy every year at this time when things get crazy, but I had forgotten (thanks for the reminder, Toni!).

The other thing is that I realized I have been really hard on myself lately, setting very high goals and expectations. I don't know why this came as such an epiphany this week, but it suddenly hit me. The truth is that I've been a perfectionist and an over-achiever for as long as I can remember. I thought that CFS had taught me to ease up on myself, but it's a lesson that I sometimes forget. Old habits die hard.

In my pre-CFS life, I usually achieved whatever I set out to do through hard work and perseverance. I still fall into the trap sometimes of expecting too much from myself. Who am I kidding? I always expect too much!

It's taken me 7 years, but I've finally accepted that I need to go with the flow - energy flow, that is - and rest when I need to...I just temporarily forgot. I think financial worries were part of the problem, adding pressure to ramp up my writing and increase my meager contribution to the family income. And while it's true that money is even tighter than usual this year, it's also true that pressure + CFS = crash. I know from hard experience that the harder I push myself the less I'll be able to do. It's so counter-intuitive, isn't it?

So, I've made a conscious decision not to worry about getting more writing pitches out until after vacation and to just focus on what really needs to be done in the short term. I'm feeling more relaxed and had a pretty good week. We still have two very busy, hectic weeks ahead of us, but I feel better equipped emotionally to deal with that.

Hope everyone has a great weekend!

Isolation and CFS

Just wanted to share this wonderful essay on isolation and CFS:

If a Tree Falls in the Forest...

Drowning

I hate to sound like a broken record, but I'm feeling horribly overwhelmed again. It seems that lately I just vacillate between being crashed and incapacitated and then feeling better but totally overwhelmed with all that's not getting done.

This time of year is always so busy, with all sorts of school functions, end of soccer season, plus trying to pull together last-minute plans for our vacation road trip (only 3 weeks left!). Of course, there's still my writing work (which is seriously stalled) and the house and yard which are both looking more and more like the set of The Munsters.

I tried to help my husband with the yard this weekend, but I can only manage about 15-20 minutes of weeding without causing a crash the next day. That doesn't make much of a dent in our large, jungle-like yard.

It's the same old CFS story. Just tackling the basic maintenance tasks each day - cooking, dishes, laundry, kids - takes up every bit of my limited energy. There's not much left for all the rest of what I need and want to do.

I don't mean to whine. Sometimes I feel like I've got this CFS life thing down and sometimes I feel like I'm drowning. This is just one of the drowning times. But I'm trying to take a positive approach to digging out (I guess I'm mixing my metaphors?). I sat down this morning and blew through the 80 e-mails that had piled up, then tackled a few short tasks. It's starting to feel like I'm making some slow progress.

Need a Laugh?

Sorry for the silence this week. I've been completely flat for the past 3 days, so haven't gotten anything at all done other than reading some good books (thank goodness for books!!)

I ended up having a nice weekend last week and I wanted to write about some insights I had...but it looks like that will have to wait for next week. I felt pretty good on Monday and a little run-down on Tuesday, but I went ahead with my plans to go to Target and Trader Joe's for a major stock-up trip. Big mistake! Jamie's been feeling bad all week, too, so I'm also wondering if there's a virus lurking around, triggering our CFS to flare up. Who knows?

Meanwhile, I thought I'd just post a few funny links that gave me some much-needed laughs this week:

• Awkward Family Photos - I laughed so hard at some of these, I cried!
• Signs of the Times
• Cake Wrecks

These are all sites where people submit photos - very funny stuff.

I'm going to try going out to lunch with my mom (she's visiting and heading home in a few hours). Hope you all have a fun and relaxing holiday weekend!

Good-bye to This Week

Or perhaps I should say "good riddance!" My week started out great, after enjoying my family's visit and definitely feeling a little better. I actually began to exercise again this week - in tiny, tiny increments. On Tuesday, I did 13 push-ups, 11 flys, and 20 pull-downs - all at different times of the day with lots of rest in between. On Wednesday, my muscles were so sore I could barely move, and I was a little run-down, but OK.

The rest of the week just went downhill, though. It wasn't anything that happened but more just my state of mind. I've been feeling hopeless and overwhelmed and lacking in confidence and motivation.

In part, everything about writing feels futile right now. It's a terrible time to be a freelancer. Even in good economic times, freelance writing is a tough job. You spend so much time and effort writing pitches and send off dozens of them with high hopes, feeling like you came up with the perfect idea for that publication. Then, you wait - often many months - for a reply. If you're lucky, you get a single line on a form rejection sent back in your SASE. Lots of pubs don't even bother doing that.

I'm also frustrated by my very limited energy. With CFS, I have such limited productive time each day, and, if I don't do something concrete toward my goals - like sending out another pitch - then I feel like I've wasted my precious energy. In all honesty, the writing I'm enjoying the most right now - this blog and my book reviews - is writing that I don't get paid for, so I feel guilty for time spent on my blogs.

Several times this week, I had the urge to go outside and RUN. Hard exercise is such a great remedy for these kinds of feelings - to go out and pour all your energy into working and sweating and completely clear your mind. Of course, that's a pipe dream. I was thrilled this week when I managed to walk around my neighborhood without stopping to rest (for the first time in many months).

Ken and the boys are at soccer practice this evening. I'm home alone, and the other thing I'd love to do is to drink an ice cold beer or a nice glass of red wine. But, of course, that's out, too. Besides the fact that alcohol makes my CFS worse, it's a major no-no for Lyme (the little Lyme buggers feed on alcohol).

So, I've made a glass of decaf mint iced tea, but it's not quite the same. I think part of my problem is simply loneliness and isolation. Even though I felt better this week, I spent every day at home alone, trying (without much success) to get some writing done.

I'm glad the week is over, but I'm honestly not looking forward to the weekend, either. Maybe just pouring out my feelings here will help some. Thanks for listening.

International CFS/ME Awareness Day

Today is International CFS/ME Awareness Day. Here are some simple things you can do to help educate the world about CFS, even if you can't leave your house:

• Participate in the CFIDS Association's Virtual Lobby Day. This helps to spread the word about CFS to your local media and your elected officials. I just finished all 3 of the actions listed, and it only took about 10 minutes (you can also choose to just do 1 or 2 of the actions). This really works! Last year, both our local town newspaper and our city newspaper published the letters I sent through the CAA's Action center. I also received responses from my Senators and Representative, as well as a thank you note from a local representative who has a family member with CFS. It works and it's easy - try it!
• Tell your friends and family about CFS. I plan to post a small note about Awareness Day on Facebook today. During the first few years after I was diagnosed, I e-mailed my family and friends to tell them more about CFS and how they could help. Several of my friends thanked me and said they wanted to know more. Here are some sources of information you can provide to others:
• About CFIDS by the CFIDS Association
• ME/CFS Facts by Phoenix Rising
• The CDC's information on CFS
• My own article, CFS: An Invisible Illness, published last fall on Lively Woman

You and your friends and family can also donate money to help fund badly-needed CFS research. I know the economy has people worried right now, but you could always do what we've done and just switch some of your charitable giving from other organizations to the CFIDS Association or another organization that supports CFS research (like the IACFS/ME, though their research fund link doesn't seem to be working at the moment).

You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:

• iGive
• Good Shop
  
• CFIDS Association's Shop and Give links

You can even earn money for CFS research when you use a search engine:

• Good Search
• iSearchiGive

I've made iSearchiGive my homepage so that all of my searches earn money for the CFIDS Association.

Spread the word!

Victory!

OK, it's a small victory, but we celebrate them when we can, right?

I not only made it through my weekend with a house full of family (10 of us!), but I actually felt very good on Sunday and was able to enjoy my family and Mother's Day. Hooray! It was a lot of work, but we had a great time. I know I've said this before and been wrong, but I really think I have finally gotten through the worst of my Lyme treatment herx and have come out the other side.

My mom and her husband came to visit from Connecticut for the weekend (it was also my mom's birthday), along with my sister and her family. The four cousins had a great time together, as you can see here. On Sunday, I even felt well enough to take everyone to our local nature center for a short hike and some prime tadpole hunting! My little niece and nephew had a blast catching and releasing tadpoles (though my 3-year old nephew kept trying to touch them!)

We also gained two new family members this weekend (hopefully low-maintenance ones). One of my niece and nephew's pet mice recently had babies (12 of them!), so they brought two to our house for Jamie and Craig. I have to admit they're very cute, and my sister assures me they're both females! My 7-year old niece told us to be very careful because "they fall in love very easily at this age."

On Sunday, with all ten of us sitting in the family room, opening Mother's Day gifts, my niece said, "Why can't we all just live together all the time?" Family times like these mean so much to all of us, and I was thrilled to be able to enjoy it. I hope all of you other moms out there had a great Mother's Day, too!

How Did I Get Here?

Most of the time, I accept this strange new world I live in. I may not like it, but I've come to a point where I understand my limitations, and I've become accustomed to the routines and restrictions of my new life. I don't think twice about saying no to things that are beyond my level of stamina or taking a daily nap or even constantly assessing how I feel in order to know what I can and can't do. But every once in awhile, the bizarre reality of life with CFS hits me suddenly. I had a moment like that this week.

I was reading a magazine filled with articles on fitness and exercise (I know, I know - why torture myself? I am always browsing magazines looking for new markets for my writing). Anyway, I'm looking at all these tips on health and exercise when the absurdity of my current life just hit me like a slap in the face.

How did I get here? How did I go from a very active, highly energetic and fit woman to my current state lying here on the couch, aching all over? It's crazy, isn't it? Absolutely senseless. There's simply no way to explain it in logical terms, despite all my research and reading on the physiology of CFS. It defies rational explanation.

I actually felt great yesterday - really great! Craig went back to school after two days home sick (was it only 2 days?), and I actually went shopping. I've been trying to go to Kohl's to return some things for over 6 months. How sad is that? Six months. I was so excited to go to Kohl's! I felt good all day, but I did way too much. I find it so hard to not overdo on those rare good days.

So, today, I'm back on the couch, aching and worn out and having to ditch all my plans for the day. What a strange way to live.

A New Week

Last week was filled with CFS's characteristic ups and downs. I crashed big-time after my trip to NJ on Tuesday and spent Wednesday entirely horizontal. I was a bit better Thursday and Friday but still not well enough to manage a trip to the grocery store. I was working to put together a photo book for my mother for Mother's Day. It ended up being a HUGE project! I spent 3 days at the computer, scanning older photos, uploading photos to Snapfish, then designing the book. It was a lot of work, but it turned out great - 50 pages with 200 photos! I can't wait for the weekend - my family is coming here to visit us for a change.

Amazingly, after all that computer work, I felt really good on Saturday! Maybe it was because of all the extra energy-producing supplements I popped on Friday and the liter of Gatorade I drank, in an effort to avoid another crash. I ended up with diarrhea from the extra supplements, but I had some energy!

Craig is home sick today - looks like a bad cold. We have a busy week (though we may have to cancel some stuff if Craig is still sick), but I also need to try to rest up for the weekend. With so much to do, I'll have to keep reminding myself of that!!