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.