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.

Teens and CFS and Letting Go and Worrying

I'm still pretty sick - definitely a combination of allergies plus yet another herx reaction to Lyme treatment. It's been a very rough week, but it's finally Friday.

My sweet little baby boy (OK, he's 14 now and towers over me, but still) is away in Myrtle Beach on a trip with his high school band for four days. It was so hard to say good-bye to him last night!

With CFS, there's just so much to worry about. There's no way he'll get enough sleep on this trip. He usually goes to bed at 8 pm every night! He had to sleep on the bus last night, and lights-out time is 11 pm for the rest of the trip.

Then there's the medication - whew! What an ordeal trying to get that all straightened out. The school insisted that every medication must be in its original bottle and must be given by the band director. When Jamie went on a similar band trip last year in middle school, they let us keep his medications in those weekly reminder boxes. I tried to explain to the school nurse that Jamie takes 20 different pills at 4 different times of day, but she insisted there were no exceptions. So, despite being so sick, I spent an hour Wednesday night organizing Jamie's meds, putting them into 4 different bags according to when they're taken, and making a detailed list of everything. I just hope they can keep it straight. Then there's Epi-pens for his bee sting allergy and a huge cooler of Gatorade to keep him floating in salt and fluids!

I know I need to quit worrying. He managed just fine on last year's trip. The timing is just bad this year, since he just got over that two-week bout of virus, then bronchitis - his stamina isn't quite back to normal yet. He still has lots of make-up work, too, but his teachers have been pretty understanding.

Watching him pack up and saying good-bye last night made me think ahead to college - only 3 1/2 more years! Wow. One thing at a time. As he leaned down to kiss me last night, I said, "Stay safe and healthy, but have fun, too!" He joked, "How can I do both?" He's a great kid, and I'm really glad that he's able to go on this trip and have this kind of experience, in spite of CFIDS. I am truly grateful for that.

Waiting for Normal

Waiting for Normal is actually the title of a wonderful book I recently reviewed, but it's been stuck in my head all day like my personal motto.

I'm not waiting for real normal, just to get back to my own kind of normal. I'm not there yet. The boys and I were all sick last week - they each caught a nasty respiratory virus, and I was just plain crashed. Jamie's turned into bronchitis, so he felt hugely better as soon as he started antibiotics. Both boys were back in school today - hurray! That was a huge milestone, although Craig could still develop a secondary infection, like bronchitis or a sinus infection. He seems a bit better today. And Jamie was thrilled to go back today after missing 7 days in the past two weeks, but he came home completely exhausted. He just gave up on his way-overdue homework and went up to bed...at 6:30 pm!!

As for me, I still feel pretty awful. I figured I was just crashed last week because of the virus lurking around, stimulating my immune system. By the end of the week, I had a severe allergy attack - it happens a few times a year, with watery eyes, runny nose, and feeling run-down and achy. So, maybe this is still just the allergies or maybe it's my herx reaction to restarting Lyme treatment or maybe both. I am so sick of playing the guessing game. It's been over a week since I've been able to get any work done. With the house finally quiet today, I had big plans, but by 9 am, I was so achy and worn out, I gave up and went back to the couch with my book. That's where I spent the whole day.

I've missed the blogging world, as well as the rest of the outside world. I'm getting sick of the family room! I guess I better go e-mail Jamie's teacher about this assignment he couldn't finish. He may need to take an Incomplete for now and do it in the new marking period. Besides, I know I shouldn't be wasting my energy on the computer - I just don't have enough right now. Hopefully, tomorrow will be better.

Another One Down

Did I just say yesterday that things were starting to look up?

By bedtime last night, Craig had a fever of 102, a sore throat, and congestion. Looks like he's got the same virus Jamie's had all week. So, today they're both home from school, and I'm still feeling run-down and achy. Looks like I need to cancel plans for my Dad and his wife to visit this weekend.

The three of us are lying around the family room watching Loony Tunes. We'll just lie low and take it easy today.

P.S. During my brief period of feeling better yesterday, I posted new reviews to my book blog and kids'/teens' book blog. Jamie and I have both read stacks of books this week!

Sick Week

Ah, so much for my optimistic outlook on Monday.

Jamie has been home sick from school all week (and also missed 3 days last week). Last week was just a CFS flare-up, but he woke up Sunday morning with chest congestion and a cough. The poor kid has been in bad shape all week - flat on his back on the couch with congestion and fever, plus all the CFS crash symptoms. He broke down in tears Sunday night and told us the aches were the worst he remembers since 6th grade (i.e. 3 years ago, before Florinef).

I took him to the doctor's today. She said it's not quite to the point of bronchitis yet, and she prescribed an inhaler to open up his bronchial passages to try to prevent infection. Hopefully, that will work.

Meanwhile, Craig and I have had what I think of as "sympathy symptoms," those CFS symptoms that come up when there's a virus around that you don't actually catch but it stimulates your immune system and makes you feel sick. Craig's managing OK - he's had a sore throat off and on for 2 days but has still been able to go to school and play.

As for me, I started out the week excited that my Lyme herx wasn't too bad and ready to attack a long to-do list. By 9 am on Tuesday, I realized I needed to put the laptop away completely and lie down. Since Jamie was on the couch, I made myself a nest of beanbag chairs on the floor and have been lying there reading most of the week. Thank goodness for books.

Obviously, since I'm back on the computer for a bit, I'm starting to improve a little, and Ken gets home from his business trip tonight, so things are looking up. Now we just have to get Jamie back on his feet.

CFS and Lyme

I'm pleased to report that I'm feeling better than I expected to at this point. We had a very nice weekend with my mom and her husband, played lots of games, and enjoyed the soccer game in Philly Saturday night (except I was so overstimulated I couldn't get to sleep that night!)

I re-started antibiotics for Lyme disease last Wednesday (I've taken two other rounds of antibiotics over the past 6 months). I expected another severe herx (initial worsening), but it's not too bad this time. For about 2-3 hours after I take a dose of doxycyline, I experience aches and knee and hip pain, but the rest of the time, I've been feeling pretty good. So, I guess I'm making progress and there's a lot less Lyme left in my body this time around - hurray! Now I'll just need to be sure to stay on antibiotics long enough to completely eradicate it.

Lots of people have been asking me questions about Lyme: how I can tell what's Lyme and what's CFS, how I know I haven't had Lyme all along, etc. These are really good questions, since Lyme and CFS are so similar and both are so difficult to diagnose properly.

I addressed some of these questions in an earlier post on Lyme and CFS, during the early stage of my treatment last fall.

I know it's different for everyone, but I knew immediately that I got Lyme last July because I had sudden, severe knee pain (and Lyme is practically an epidemic here!). Plus, we had just come home from a 3-week trip that included lots of camping and hiking. Joint pain has never been a part of CFS for me, and my older son also had knee pain when he got Lyme twice before. Other Lyme symptoms, like exhaustion and flu-like aches, are exactly like CFS. For me, though, I knew I'd been doing very well lately and that crashes were more rare and typically lasted only a day or two after exertion. So, when I suddenly went from doing pretty well to feeling crashed every day - and then the knee pain started - I was certain I had Lyme. I think it's all about knowing your baseline...unless of course you've had Lyme from the beginning (my earlier post explains why this wasn't true for me).

Interestingly, I have still never had a positive test result for Lyme, even when a Lyme specialist sent my blood samples to Igenex, well-known as the best lab for Lyme testing in the U.S. Many doctors believe that the only truly accurate "test" for Lyme is to try doxycycline (an antibiotic used to treat Lyme). If symptoms improve briefly and then get much worse, it's Lyme (the getting worse is a herx or die-off reaction); if there's no change at all, it's probably not Lyme. After a couple months of herx, my symptoms (the knee pain and the "new" crash symptoms) went away completely and I felt just like I had before I got Lyme last summer. Unfortunately, I just stopped antibiotics too soon, and there was still some Lyme left in my body, so hopefully, this round will take care of that.

For anyone with CFS, I would highly recommend you consider Lyme and its co-infections if you have joint pain and/or severe cognitive dysfunction (common in later-stage Lyme) and you have gotten worse over time instead of better. You can start with the standard tests, but false negatives are common, especially when you have a messed-up immune system. Here is an excellent article on a Lyme blog explaining 27 reasons why false negatives occur. If you have the symptoms but test negative, you might want to talk to your doctor about a trial of doxycycline.

Something else to be aware of is that there are about a half dozen other tick-borne infections that commonly occur with Lyme, often referred to as Lyme co-infections. These also cause symptoms very similar to CFS (one even causes exercise intolerance) and require different treatment. There are tests for all the co-infections - again, not 100% accurate but a good starting point. In fact, I'm beginning to suspect that Jamie may have a Lyme co-infection, mycoplasma. He tested positive for it a year ago, and the Infectious Disease specialist wondered why. I recently discovered it's a Lyme co-infection, and Jamie has had Lyme twice. I'm going to look into this with his doctor.

Want to learn more about diagnosis and treatment? The Lyme Disease Foundation offers extensive information on Lyme and all of its co-infections. The International Lyme and Associated Diseases Society is one of the best sources of accurate information on Lyme and co-infections, including several different very detailed guidelines on diagnosing and treating Lyme and co-infections.

I hope this helps to answer some questions.

Starting Over

Well, it's official. I finally talked to the Lyme doctor on the phone today and described the symptoms I've had this week, and he agreed that it seems I still have Lyme.

It was obvious to me by Wednesday when I still felt badly crashed, with ever-worsening knee pain. Joint pain has never been part of CFS for me, just Lyme recently. I started back on doxycycline Wednesday night (I had a few left over) and felt much better Thursday. Today I'm starting to feel run-down and achy again - obviously went through the brief (but welcome) improvement and am now entering yet another herx reaction.

I've been upset at times this week (I actually starting crying in the drugstore today!), but I'm in a better state of mind now. It is what it is, and the only way to get past it is straight through, right? I know I can expect to feel bad for awhile while I herx again, but I also know that beyond that I will feel good again.

One thing that helped me today was reading a very inspirational magazine interview with Michael J. Fox. Years ago, I read his memoir, Lucky Man, and was so impressed with his positive, upbeat attitude. Now he's written another one called Always Looking Up: the adventures of an incurable optimist (to be released April 7), and it sounds just as inspirational as the first. Here are some excerpts from his interview in this month's Good Housekeeping magazine that really resonated with me today:

"It is about trying to still the voices in your head - the monkey brain that's saying, "Gotta do this, gotta do that" - and trying to really listen."

"I would say look at the choices you have, as opposed to the choices that have been taken away from you. Because in those choices, there are whole worlds of strength and new ways to look at things."

"It's just constantly being in the now; knowing you don't get to choose whether you move forward. You're going to move forward, so don't fight it."

Well, my little monkey brain was definitely in gear today, so I'm trying to quiet it down and accept what is happening and find the best way to move forward.

We have a busy weekend planned. My mom and her husband are coming to visit, and we're going to a soccer game in Philly (one of the boys' Christmas gifts) Saturday evening. I know I might end up feeling like crap this weekend, but it's OK. I'll be with my family, and I'll try to enjoy their company.

Hope you have a good weekend, too.

Weekend Update

We had a great weekend in Baltimore, and I promise to upload some pictures soon. I just wanted to post a quick update on how we fared after our big weekend.

I walked more this weekend than I normally would in a month! We spent lots of time strolling around Inner Harbor, plus touring the U.S.S. Constellation (a Civil War-era ship in the harbor) and the National Aquarium. Not all that exerting but the worst kind of activity for someone with CFS - lots of time on our feet. We also spent two hours in our dark, quiet hotel room on Saturday, resting in between activities, so that helped all of us.

Craig came through the weekend with no problem at all and went off to school Monday morning feeling great. It's really amazing to me sometimes how well he's doing since he started Florinef. It makes me feel so good to see him in his natural state - active and energetic.

Jamie didn't do so well. He's home from school today for the second day, achy and worn out. I don't know how much of this crash is from Baltimore and how much is due to last week's two snow days, when he and Craig spent two straight days sledding, with after-school snowball fights the rest of the week. He said this weekend that he felt bad all last week but forced himself to go to school - he can only push himself like that for so long before succumbing to a full-blown crash.

As for me, I did great this weekend! I felt good and managed all the walking just fine (the long rest helped a lot!) ans felt pretty good on Monday. And I had NO knee pain at all, so I was thinking maybe I was wrong about the Lyme disease still being active. Now I'm not so sure again. I feel pretty bad today - achy, tired, sore throat. Is that a delayed reaction from the weekend, simply a CFS post-exertional crash? Or is it because I put the heating pad on my knees last night and caused a Lyme herx (that's what happened while I had Lyme)? I'm starting to think that the only way I'll be able to answer the Lyme question for sure is to try one more week of doxycyline (antibiotics) to see if they cause a herx. No response means the Lyme is truly gone; suddenly feeling worse means it's still there. I have an appointment with the Lyme doctor next week (supposed to be my last one!!), so I'll probably need to just wait and see.

I have to get to the post office, then I plan to rest aggressively the rest of the day!

Joy

A fresh day, a fresh start. I'm in much better spirits today. Thanks for all the support and encouragement. I made a conscious decision to enjoy the weekend and deal with the possible return of Lyme on Monday.

I cheered myself up by sending out two new writing queries (to ease my financial worries), making homemade butterscotch pudding (is there any food more comforting than pudding?) and listening to my "Feel Good" playlist. It's impossible to stay in a bad mood when belting out Queen's Bohemian Rhapsody or I Will Survive by Gloria Gaynor. What are your favorite feel-good, cheer-up tunes?

For awhile now, I've been wanting to write here about joy. Although I've always been an upbeat person, CFS has made me more acutely aware of how important it is to find joys in my everyday life, even when things seem bleak. A few years back, during a particularly difficult period, I began keeping a Joy Journal. At the end of each day, I jotted down things that had brought me joy that day, and I began to realize that there were plenty of good things in my life, despite the boys and I being so sick. Many of the things I wrote about were simple - singing a favorite song in the car with the top down, seeing a bright splash of yellow forsythia in spring, or playing a game with my kids. I don't write in the journal every day anymore, but it's still there to remind me of the joy that is all around me.

Some of the things that bring me joy are:

• My family, especially my kids
• Good friends
• Music
• Reading
• Nature, the outdoors, and sunshine
  
• Travel
• Movies and favorite TV shows
• Cooking and delicious food

I plan to write more about each of these joys over the coming weeks, to help remind me of what brings sunshine to my days, even when the dark clouds threaten. And I want to share my joys with you and hear about what makes you happy, too.

Have a great weekend - I plan to!

It's Back

I haven't been feeling well this week. Not horrible, just run-down with achy legs. I've been trying hard to be patient and remain positive, trying to convince myself that it's just a mild crash from doing too much last weekend or maybe from the little bit of snow shoveling I did on Monday. I've canceled errands I wanted to run, put off things I meant to get done, and tried hard to rest even though my mind has been racing.

But I can't ignore the facts anymore. The achiness is definitely centered in my knees now, and it's getting worse, not better. I think - no, I'm pretty sure now - that I still have Lyme.

I quit the antibiotics 10 days ago, felt really great last week, and have been getting worse and worse since Monday. I've been through this before, in October, and I know what comes next. I go back on doxycycline and have to go through the herx (worsening of symptoms) again.

I'm trying hard to stay calm and not panic, but the truth is that I'm close to tears right now. I thought I was done with Lyme. Isn't CFS enough to deal with?

Mostly, I'm worried about the next few days. I've worked hard to plan this trip to Baltimore this weekend, and I've been so excited about it. Now I can't decide whether to go back on the antibiotics immediately or wait until after the weekend. I'm not feeling great right now, but what if the herx starts right away and I get much worse for the trip? Or maybe if I start back on doxycycline now, I'll have a few days of feeling good before the herx starts (sometimes it works that way). I don't know what to do.

Also, we learned this morning at the orthodontist that Craig will definitely need braces next year. Previously, they thought he'd only need a retainer (which he had last year). So, my plans to try to set aside a little money so we could take the kids on a nice vacation next year are shot. I don't know how we'll find the money to pay for braces, on top of all the other medical bills.

A very rough day.

Seven Years Ago Today

Seven years ago today, I suddenly developed CFS and my life changed dramatically, though I had no idea at the time.

March 2, 2002, was a day like any other Saturday in my life: I took a step class at the Y while the boys took their swim class, cleaned the house, played with the kids, and cooked a big dinner. That evening, I was unusually tired and had a severe sore throat. The next day, Sunday, we had planned to take the boys on a day trip to Baltimore. Even though I wasn't feeling well, we stuck with our plans.

I vividly remember that day in Baltimore. My throat hurt so much it felt like I had swallowed barbed wire, and I kept popping hard candies into my mouth to soothe the pain. I woke up feeling tired that day, but, more than the exhaustion, I remember feeling a weird, foggy sense of detachment, like I was existing in another dimension. I remember walking through the National Aquarium and feeling so weak and out of it that I was leaning on the handrail near the shark tank, barely aware of what was going on around me.

I think the strangest thing of all about the abrupt onset of CFS is that you have no idea what's going on at the time. I looked back at my 2002 journal this morning, thinking that there would be a dramatic shift from March 1 to March 2, but there's no indication of that. I just thought I'd caught a virus and would be fine in a few days. And, here I am, seven years later, doing a little better but still sick. Isn't it bizarre?

Guess what we're planning to do next weekend? We're going to Baltimore for a mini overnight trip. We often have some sort of little late-winter getaway this time of year, often to Rehoboth Beach, but this particular trip, this week, to Baltimore, feels like a small victory to me. The boys were only 4 and 7 the last time we went there, so they really don't remember it, but I do. We will go back to the Aquarium, but this time, I know what to expect, and I'll be able to enjoy it, on my own terms. I may still have CFS, but I have reclaimed my life.

P.S. If you want to read more about how my CFS began and how I coped emotionally during those first years, take a look at the essays on the CFS page of my writer's website, www.suzanjackson.com. My Story is a detailed essay about getting sick, finding a diagnosis, and learning to live with CFS; Finding a New Normal is a shorter essay about acceptance that includes excerpts from my journals at the time; and Sick Mommy is about the unique challenges of being a parent with a chronic illness.

Flexibility & Giving In

I woke up this morning - after grocery shopping and dinner with friends yesterday - feeling exhausted and achy, with a bit of a sore throat. Still, I didn't want to give up on my plans for today. I had planned to go see a local photography exhibit with two friends and then have lunch. It's extremely rare that I do something like that, it fits with my new determination to have more fun, and I was just really looking forward to it. I tried an early morning nap, after I got Craig off to school, but I knew when I got up again that I really shouldn't go anywhere.

So, reluctantly, I let my friends know I'd have to cancel (I'm blessed with such understanding friends!), and I gave into the mild crash and camped out on the couch for the rest of the morning.

Flexibility is so important to managing CFS, but it took me such a long time to accept that. It's still so hard to get past thoughts of "but I HAVE to do that," and change my plans like I did today. Sometimes it's as trivial as a trip to the grocery store, but my husband always reminds me he can stop to pick up food. Sometimes, like today, it's something I want to do, plus I don't want to disappoint other people. But living with CFS means I (we) have to stay flexible. Last year at this time, we were ready to drive to Connecticut for my niece and nephew's birthdays, like we do every year. Jamie had been horribly sick all week, but we were still stuck in that mindset of "we HAVE to go." Finally, at 5 pm on Friday, with the car fully packed, Ken and I decided we needed to stay home. It was the right decision - Jamie continued to feel bad until Sunday - but it was so hard to make.

So, today I was rather proud of myself. I made the hard decision. Then, I did something else that's hard for me to do. I completely gave in to the need to rest and took the day off. I grabbed a warm quilt, a cup of tea, and my book and just allowed myself to relax. I ate comfort foods and watched an old movie with my lunch, then took my nap. Usually, even when I know I need to rest, I fight against it, still trying to do something productive from the couch or the recliner, still worrying about the to-do list.

So today I did the right thing, and I'm feeling a bit better this afternoon. I am hoping to go to my neighborhood book group tonight, after more rest time on the couch (I still have to finish the book anyway!) We'll see. As with so many aspects of CFS, these are lessons I seem to keep re-learning over and over, but today I'm glad I listened to that little voice inside telling me to rest.