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!!

Best Laid Plans

Yesterday I wrote about making an effort to rest and recover...yeah, well, things didn't actually go as I planned yesterday!

Our a/c compressor blew and shorted out the power to most of our house at about 5 pm - at the hottest time of day (it was over 90 here yesterday). So, we spent hours scrambling around, trying to get the power back on, calling the a/c repairman and an electrician, in the midst of getting dinner on the table. Fortunately, the oven, stove, and fridge were among the few circuits still operating, but I really regretted choosing a dinner that required a 500 degree oven! (I started it before the power went out).

Well, we finally got the power back on, but the a/c won't be replaced until next week. By evening last night, I was wiped out from the stress and all the extra time on my feet!

I saw my Lyme specialist in NJ today. He's still very optimistic that I can get rid of Lyme completely, since my symptoms cleared - 3 times! - with antibiotics. He just thinks I need to stay on longer. The general rule of thumb is to stay on abx for 4-6 weeks after all symptoms have disappeared, but he thinks for me, it will have to be 2-3 months. At this point, that probably means at least another 4-5 months of antibiotics for me.

I was exhausted when I got back from NJ (took a nap in the cool basement when I got home!), but I actually sort of enjoy my trips up there. I know that sounds strange, and it is tiring for me, but there's something about road trips that I find really relaxing. I supply the car with a great audio book, snacks, my water bottle, and V-8 (for the sodium), and once I'm on the road, I don't have to worry about anything else. The drive up the Jersey Turnpike is pretty easy in the middle of the day - just set the cruise control and go - and there are no other pressures to worry about, nothing else I could or should be doing, so I can just relax and enjoy my book.

So, all in all, not a bad day (though it's very hot in the house now!), and I'm pleased with the optimistic prognosis on my Lyme.

Recovering

I had quite a few days in a row of pushing myself too far, so now I'm trying to take care of myself and recover a bit.

With Ken gone for most of the week, I was doing a lot more around the house than I usually do, and I wasn't sleeping well. Plus, after feeling so sick for the past 6 weeks from my Lyme herx, I was trying to make up for lost time. In short, I was ignoring all signals from my body and pushing past my limits just about every day. The result? I've been SO tired for the past few days! I've been barely functioning through the morning, until I take my nap (then the day's almost over).

Also, after joining Facebook last week, I was spending WAY too much time on the computer. But it's so much fun! I've been looking at old photos of my friends and I when we were teens (all the girls had the exact same hairstyle), reminiscing, catching up with college friends I haven't seen in over 20 years, and connecting with all my cousins. Fun but too much time upright for me.

My car broke down this weekend (yes, again!), so I had to walk Craig to the bus stop this morning. I came back home after two slow 10-minute walks feeling awful, so I spent most of the morning on the couch, catching up on reading. It took a lot of willpower, but I stayed off Facebook all morning! I have my appointment with the Lyme doctor tomorrow in NJ - first visit since my symptoms returned - so hopefully, I'll be in decent shape for the trip up there and back. Definitely going to take it easy tonight.

CFS Doctors

A quick request -

Anyone out there know of a doctor in Minnesota who understands CFS? Even better if the doctor has experience in pediatric CFS and Orthostatic Intolerance.

I checked Co-Cure's Good Doctor List, but there's no one listed for MN. Thanks!

The Joy Of Friendship

Although I'm in much better shape now, two weeks ago I was in the midst of many weeks of isolation and debilitation, when I experienced a day filled with friendship, both old and new. Now that I’m able to sit at the laptop again, I wanted to share this particular joy.

On April 7, I realized that Michelle, my oldest friend, had a birthday the next day. I was too sick to go out shopping, so I sat at the computer and made her a card covered with photos of us through the years. We’ve been friends since she was 4 and I was 5. We were moving into her neighborhood, and I was riding my little bike with training wheels along the side of the quiet street when I encountered a blond-haired girl about my age, also riding her training-wheeled bike. We were both wearing crocheted multi-colored ponchos (this was 1970!). The rest is history! We’ve been best friends ever since, through her family moving away during elementary school, our college years, jobs, and family. We live in different states now and don’t get to see each other as often as we’d like, but whenever we do see each other or talk on the phone, it’s like no time has passed at all. Making her card reminded me of all those memories.

After I got Michelle’s card in the mail, I rested on the couch. At 11:45, I was thinking about lunch when the phone rang. It was Amy, one of my closest friends from my teen years and beyond – and the maid of honor at my wedding (pardon the poofy bridesmaid dress - it was the 80's) – calling to say she was a couple miles from my house visiting a client (she lives 8 hours away in my hometown)! I couldn’t believe it. I hadn’t seen her in over a year, and there she was, at my front door, minutes later. We had lunch together, laughed about old times, and chatted about everything from our kids to books we’d been reading. What a wonderful surprise!

Later that evening, after a long nap, I met two of my closest, more recent, friends, Amy and Marti, for dinner and our book group. I had rested for two days straight so I could make it out for the evening. Of course, I paid dearly for the effort the next day, but those few hours with my friends were well worth it – such a treat after the past lonely five weeks! The three of us met when our three oldest sons – all named James! – met in kindergarten. The 3 James are still best friends after 10 years, and our own Mom friendships have grown through the years, too. We all love the outdoors, travel, and reading, and they’ve been there for me through some of my worst times with CFS. Marti even brought dinner over yesterday, when she heard that Ken was out of town all week.

My closest friend is my mother. She knows me and understands me like no one else in the world. We love to cook together, share books, and play games – especially Scrabble! I love the rare occasions when we’re able to meet in NYC for dinner and a show.

And finally, there are all of you!! My first years with CFS were so horribly isolating and lonely. Writing this blog and meeting so many wonderful people from all over the world whose lives are so similar to mine has been uplifting and revitalizing for me. Your words of support and encouragement on my worst days – and your sharing in the joys of my better days – mean so much to me. Thank you.

Friendship is a huge source of joy in my life, even (or especially?) when I’m severely ill. I am blessed with several once-in-a-lifetime kinds of friends – some who’ve been with me through most of my life and some who’ve been by my side for the past ten years or so here in Delaware – as well as so many wonderful virtual friends. I am grateful for my friends and the joy they bring to my life.

New Study on Fibromyalgia and Low-Dose Naltrexone

Hurray!

The results of a recent study on treating fibromyalgia with low-does naltrexone (LDN) were just released. Here's a summary of the study from WebMD. A 30% reduction in pain is nothing to sneeze at!

This is great news - finally some hard research! Now they just need to fund studies on CFS and LDN. More information on LDN and my own experiences here. Update: I still take 3 mg of LDN each night. It helped me improve about 10% on the disability scale. That might not seem like a lot, but it meant an increase in my quality of life because I could do more. Maybe with real research, more doctors will be willing to prescribe it.

A Bit Overwhelmed

Two weeks ago, I said I was coming back to life, after weeks of Lyme treatment herxing. That turned out to be premature optimism, and I spent another two weeks lying on the couch.

But, now, I really do seem to be coming out of it and getting back to my own version of normal. I feel a bit like Rip Van Winkle, though, waking up after six weeks of being unable to do anything. I'm discovering unpaid bills, school notices I missed, and piles of unopened mail. There are so many laundry baskets and piles of clothes in the hallway we can barely get into the house.

I'm also worried about making some money. I've only been able to tackle the absolutely necessary writing assignments lately, so I got back to work today sending out new pitches to my editor. Two of the magazines I pitched to in the past six months have now gone out of print. We were planning to quit our pool membership this year, but we missed the deadline (one of those unpaid bills!), so that's another expense. Worst of all, my husband's company just announced that everyone has to take 10 days off without pay this year.

To top it all off, my father-in-law called yesterday to tell us he fell in the shower last Tuesday (and never called!). He's been in terrible pain, so we rushed around to make him an appointment with a doctor (he needed a little push), and Ken will be flying out to Oklahoma tomorrow to help him out this week.

Whew, my head is spinning! I feel guilty just taking time out to write this post (another thing I'm way behind on - writing and reading blogs).

I don't mean to complain, though. Really. I'm so relieved to be up and around again, and I'm very much aware that some people with CFS (including some of you!) are always as incapacitated as I have been recently. How do you keep up?

Well, I better go pay another bill and get back to digging out from under. Despite all the piles, it's good to be back.

The Joy of the Outdoors

I’ve been meaning to write more about all the joys in my life, but then I got too sick to post much for a while. I’m able to work at the laptop again, so I’ll try to tackle a joy or two a week.

The boys were on spring break this week, so I decided to plan a short getaway doing one of our favorite things – camping. We just returned from two days at a state park in Maryland, enjoying the beautiful spring weather (after days of torrential rain!), and camping in our pop-up camper. We also took the boys kayaking along the Chesapeake Bay – something I’ve been wanting to do with them for a long time.

Spending time outdoors is one of the greatest joys of my life. Ken and I bonded while camping and hiking when we were dating, and when we had kids, we pledged not to give up our favorite activities. Jamie and Craig each went along hiking with us at 6 weeks old, and we took each of them camping before they were 6 months old. They’ve grown up with an emphasis on outdoor fun, and they love the outdoors as much as we do. (That's me in the photo - pre-CFS, carrying Craig, with Jamie in the foreground, on top of Bubble Mountain in Acadia National Park in Maine, Jamie's first peak hike).

It brought me such joy this week when we were packing for our camping trip, and I overheard my sons telling their friend (who came along) all about what to expect. They were so excited as they told him about all of our traditions and favorite things to do while camping. When we got home today, Craig gave me a huge hug and told me he had a great time. It means so much to me that we’ve imparted this love of the outdoors to our kids and that they still enjoy spending time with us outdoors.

My 9-month (and counting) bout with Lyme disease has made me a little freaked out about being in the woods, but we made sure to cover ourselves with bug spray all weekend and do nightly tick checks. I refuse to let this nasty illness ruin something that brings me so much joy.

Obviously, when CFS hit seven years ago, it put a damper on my outdoor activities, but we have never given up on spending time outdoors. When I’m at my sickest, I pull a lounge chair out onto our deck, and the fresh air and sunshine revive me emotionally, if not physically. When my stamina is poor (as it is currently from my Lyme treatment), I can still camp with my family, even if I can’t go along on hikes. I spent a lot of time this weekend reading in a lounge chair in the sunshine. When we went kayaking, Ken and I shared a tandem kayak, so he did most of the paddling work for me. Being out on the quiet water at sunset, watching osprey fly overhead, and seeing our sons paddle around like old pros filled me with joy.

Being outdoors lifts my spirits. It renews me. Being away from phones, TV, and, yes, even my beloved laptop, helps bring a sense of peace that I could never get resting at home. And when I’m feeling better, I still love to take short hikes. When I dream about someday being well again, I dream about hiking, backpacking, and canoeing without restrictions.

You can read more about our outdoor adventures at my Outdoor Family website, and I have a photo essay on my Travel Family website about our favorite outdoor activities in Arkansas (we travel through every summer on our way to visit Ken’s parents in Oklahoma). In fact, I need to start planning our annual summer road trip/camping trip soon.

Need a pick-me-up? Go sit outside and breathe that fresh air!

I Survived Another Holiday

Sorry I've been writing so little here lately, but I've continued to be very ill - still going through the herx reaction from restarting Lyme treatment, I guess. It's been over 5 weeks now. I do seem to feel a little better today, but I don't want to get my hopes up! The last two times I started antibiotics for Lyme, I had severe herxes lasting 8 weeks and 6 weeks, respectively, so we'll see.

I'm feeling a bit victorious today, for surviving another big holiday weekend. A friend e-mailed me on Friday to ask what we were doing for Easter, and she mentioned that they didn't really have any plans - probably just dinner with family on Sunday. Given how bad I've been feeling lately, that sounded wonderful! Our holidays are never quiet and relaxed because none of our family live nearby. Every single holiday involves a trip to visit family, staying in someone else's house, and lots of noise and activity (and my family is NOT the silent type!). This past weekend was no exception.

We drove to my Mom's house, about 3 1/2 hours away, on Friday and spent the weekend in a house with 10 people! I'm sure you can all relate to the challenges of being away from home when you have CFS. I have to take a strong dose of Ambien just to be able to sleep at night, and the constant noise and chaos can really wear me out.

I managed OK this weekend, mostly because I've been so severely ill lately that I had very low expectations for myself. I've had so little stamina that I didn't even try to keep up with everyone else. I went to bed by 10 each night, did very little to help with meals (it's so hard for me not to pitch in!), and didn't even attempt to go along on the annual family scavenger hunt. Also, I was in fairly good spirits emotionally. I tried to just enjoy my family as well as I could and take care of myself. I did go along to the beach-side park for the scavenger hunt, positioned myself on a bench near the entrance, and helped my team figure out some of the clues via cell phone!

I love my family very much and enjoy being with them, but these visits are so difficult for me. What helps me immensely is how supportive my mom is. She went through some serious denial when I first got sick - just couldn't accept that I could be seriously ill - and we had some rocky times. More recently, though, she's made a real effort to learn more about CFS and be supportive and it makes such a difference! Some family members still refuse to acknowledge how seriously ill I am, and that makes it very difficult to be around them. My mom really worked hard to make things easier for me this weekend, though. I'm grateful for her understanding and support because that makes it possible for me to enjoy some time with my family, and it's also so important to me that my kids get to experience these family times.

So, I survived - and even sometimes enjoyed - the holiday weekend, and we're all working on taking it easy and recovering now!

P.S. We just finished a dinner of left-overs from yesterday's Ukrainian Easter feast at my mom's - Wow! That food is SO good. Why do we only eat that meal once a year? Oh, yeah, because we'd all weigh 500 pounds if we ate like that all the time! Mmmm....

There and Back Again

This weekend, I sunk into a deep depression and am climbing back out today, relieved to be feeling more like my "normal" self emotionally. I've written here before about these occasional bouts of darkness that can swallow me up without warning (The Dark Side, Depression & Obsession, A Life of Contentment with Pockets of Despair). I know from reading your comments and others' blogs that this is perfectly normal for someone with CFS. I also know that for me, these sudden avalanches of despair are mostly bio-chemical, caused by some shift in my brain chemicals that goes along with some crashes. I know this because I never experienced it before CFS and because it is such an abrupt, drastic shift for me.

This weekend was typical. I've been sick for weeks now and mostly stuck on the couch. I did have one good day last week - when I posted that I thought my herx was coming to an end - but then I foolishly went shopping and spent all my new energy and crashed again. I kept waiting to feel better because post-exertional crashes don't usually last long for me anymore, but I just kept feeling terrible, with very low stamina. Guess I'm still herxing from the Lyme treatment.

My Dad came to visit for the weekend, and I know I was on my feet too much, cleaning up before he got here and cooking this weekend. I was quite debilitated all weekend and unable to do much of anything, except cook meals (which I shouldn't have been doing!). I started to feel depressed on Saturday afternoon, as I struggled to get dinner ready after my unrefreshing nap, but I managed to hold myself together. By Sunday, I was in a deep well of despair. Ken and my Dad went golfing, and I was baking banana bread for a neighbor going through hard times (yes, I know - I shouldn't have been doing that either!!), and the tears just started rolling down my face. As I cleaned up the kitchen, I was sobbing uncontrollably.

I felt a frantic need to escape, but how can you escape from your own body? I even fantasized about going off by myself for a day or two somewhere, but I realized that would be stupid. Besides the physical exertion, being alone is the last thing I need; loneliness and isolation are a big part of how I was feeling.

I don't know what finally broke the black mood - the Omega-3's I took, the extra-long nap, or taking the boys in the convertible to our local dairy for opening weekend ice cream. Probably it was none of these, and the depression just ran its course.

How can it feel so powerful at the time, when I know it's "just" part of the rollercoaster of CFS? How can I know that it's a biochemical shift in my brain, yet still be so helpless when it hits? I even feel a little silly today, for getting so upset and feeling so despondent. I'm just glad it's over (for now).

Well, I'm still not feeling well, so I better get off the laptop and back to the couch. I'm trying to focus on the mantra I repeat to myself at bedtime on bad days:

Tomorrow will be a better day.

Coming Back to Life

As you can see from this photo, many of the trees here are still mostly bare, but this one tree in our neighborhood is in full bloom, a sign that things are coming back to life after the winter. I thought that was a fitting analogy today for my own life. I'm finally beginning to feel better after two weeks of being completely incapacitated with a herx/crash, and I feel like I'm coming back to life, too.

During severe crash periods like we just went through, Ken and I feel like we go into survival mode. With me flat on my back on the couch and unable to do anything, Ken comes home from work each day to work another shift - grocery shopping, cooking, doing dishes, helping with homework. When the kids are also sick at the same time - as it was for much of the past two weeks - that sense of just struggling to get through each day is enhanced. Nothing gets done except the bare minimum we need to keep surviving. During times like that, we sometimes talk about how no one outside - no "normal" people - could even imagine the way we're living. It's very isolating sometimes.

But, I'm coming back to life now and facing all the stuff that sat undone for weeks. I even took a walk around the neighborhood today (though that might have been too much!).

Jamie returned from his band trip last night. He said he had a great time and felt good the whole time! Of course, he was totally exhausted after school today...but he DID go to school which was pretty amazing. Craig was home today, after staying up until 1 am at a sleep-over Sunday night (no school on Monday), but this was just a brief post-exertional crash for him - he's already feeling better.

So, life is returning to normal - or at least, as close to normal as things get around here! Hope you had time to enjoy spring today, too.