Happy Halloween 2008!

Well, it's been a rough week for us, but we made it to Friday and Halloween! We really get into the spirit of celebration on Halloween - it's one of our favorite days of the year. And we really needed this day of celebration this week. Here we are, ready to go out trick-or-treating - Ken as Frankenstein, Jamie as a zombie, Craig as a mummy, and me as a witch! Ken and the boys are still out in the neighborhood, with a couple of friends. I did my usual few houses near our cul-de-sac and came home to put my feet up.

I'm back on antibiotics for Lyme and seem to be having a herx reaction (the initial worsening when treating a long-time infection) - I've felt pretty crummy for the past few days. I got depressed this week when I realized the Lyme was not completely eradicated - and may never be. A local friend who heads up the Delaware Lyme Support Group helped me a lot, with both advice and emotional support. I was also deeply touched - and greatly helped - by all of the wonderful, caring comments you left on my blog this week. Those comments meant so much to me at a time when I felt so alone. Thank you!

Hope you had a fun Halloween!!

A Bad Day

One of my blog readers recently remarked about how I seem to have a great, positive attitude and always seem optimistic. I'm not feeling like such a sunny optimist today, though.

Ever have one of those days (or two days) when everything seems to go wrong? The past 24 hours have been really rough for me. For starters, I was very sick this past weekend and am still not back to where I usually am. By Monday, I was doing a lot better, but my 10-year old son, Craig, crashed. When two of us at a time crash, it usually means there's a viral trigger around somewhere. So, Craig's been home from school all week, though he did manage to go in for the last few hours today.

I had to take my older son for x-rays yesterday after school. He hurt his elbow playing soccer a couple of weeks ago, and it doesn't seem to be healing, so the doctor said to take him for x-rays. On our way home - in freezing cold rain and heavy winds - I went around a curve in the road and suddenly felt the car lurch out of my control. I tried to brake and to steer, but the car seemed to have a mind of its own, and we hurtled off the road, over a curb, and finally stopped in some bushes.

It was terrifying, and all I could think about was that the boys were in the car with me. I backed out of the bushes and pulled forward, back down off the curb (probably a mistake in hindsight), and to the side of the road. The right front tire was blown, which is probably what caused me to lose control of the car. Since I drive a very small, low car (a 92 VW convertible), and it was a high curb, I decided to have the car towed to the dealer, just to be on the safe side. I also wasn't entirely sure whether the blown tire caused the accident or whether something else had gone wrong and the tire blew on the curb.

Fortunately, we were all fine, just shook up. My husband arrived shortly after the tow truck, and we finally went home. The service manager called me today - it's going to cost $650 to fix my car (two wheels and another part were damaged, plus the tire). As with most people these days, money is very, very tight right now. I just sent a pile of medical receipts into our Flexible Spending Account to get the remaining $800 out. Some of that was going to be for Christmas presents - now most of it will go into just keeping my car on the road.

Then, I woke up in the middle of the night, with severe pain in my left knee. The knee pain has been bad all day long. I just finished my antibiotics for Lyme a few days ago, but it looks like it may be back. Of course, the stress of yesterday's accident almost certainly caused a CFS flare-up, but knee pain for me has been associated with Lyme, not CFS. Ironically, just today someone sent me a study about how Lyme bacteria can linger in tissues long after antibiotic treatment. So, I just got off the phone with my doctor, and she wants me to go back on doxycycline for awhile longer. This was really the last straw today. I thought I was through with Lyme and back to "just" living with CFIDS. I really just lost it earlier today at the thought that the Lyme is still there, hiding in the tissues of my knees.

I know I have some things to be grateful for. Craig went back to school today. No one was hurt yesterday. If the left tire had blown instead of the right, we would have been propelled into traffic instead of off the road. I know we're fortunate it wasn't worse. But our money situation just gets worse and worse, and the Lyme still being present is overwhelming to me right now. Not feeling very positive or optimistic today.

D-ribose?

Has anyone tried taking D-ribose supplements?

I've read about this natural sugar supplement for improving energy in CFS and fibromyalgia from several different sources. I've been meaning to try it for a few months, but there have been too many other things going on - finishing Valtrex, starting Lyme treatments, etc. Now I'm finally at a point where things seem stable (for the moment!) and my underlying infections have been treated, so I'm going to try it.

From what I've read, D-ribose is normally synthesized by a healthy body to help rebuild energy. Since CFS messes up our metabolism and energy production, our bodies can't make enough D-ribose on their own. I've read about many people with CFS and FM who say D-ribose helped.

So, I just ordered some of the powder, and I'm going to give it a try. I'll let you know how it goes. Has anyone else tried this? If you have, I'm interested to hear if it's helped or not.

What Is Energy?

I've continued to feel mostly good this past week - still no sign of the Lyme recurring. I have been super-productive lately, catching up on insurance paperwork (mainly because we desperately need to get back the money due to us!) and showering my editors with new ideas for articles and reviews. I still feel my mid-day slump, from late afternoon till early evening, when I need to take it easy, but by evening, my mind is in high gear again. I lie in bed thinking about all the new projects I want to start, composing various writing pieces in my mind, excited about waking up in the morning to a new day full of new possibilities.

It occurred to me last night that energy and its nemesis, fatigue, are about so much more than simple physical capability.

When CFS flares up and I am crashed, my brain feels like it's filled with molasses. There are the physical symptoms - sore throat, flu-like achiness, exhaustion - but there is also a mental exhaustion. In this state, I am almost incapable of writing at all, let alone putting together new and creative ideas. Not only that, but I don't want to write or do anything else. When I am badly crashed, all of that mental energy disappears. There are no new ideas, no eager anticipation of what to do next, no motivation to do anything at all. At these times, my mind craves rest just as much as my body. I feel dull, lazy, and apathetic.

In contrast, on a good day, I am filled with drive and enthusiasm, eager to start work each morning and frustrated when I have to quit for lunch and my nap. I am still aware of physical symptoms at these "up" times and know I have to respect my limits. I switch to writing on the laptop in the recliner when my throat starts to hurt or take only a short walk even though I feel full of energy, in order to avoid a later crash. But even with these physical restrictions, my mind feels free and full of energy.

Then there are days like today. I walked for too long yesterday with a friend at the park (I still haven't learned!) and have crash symptoms today - sore throat and aches. Interestingly, though, I still have mental energy today. Even as I force myself to lie on the couch to rest, my mind is still working at a fast pace, coming up with new writing ideas as quickly as I can jot them on the pad by the couch, eager for my body to feel well again so I can pursue my goals.

I am fascinated by this change in mental energy with my CFS symptoms. I feel very fortunate to have good days now and realize why long, severe crashes are so hard to endure - it's not just the physical restrictions but that empty, listless feeling that makes it so impossible to do anything at those times.

Interestingly, the first improvement I noticed when I started taking anti-viral medications was a mental clarity that I hadn't even realized I'd been missing (click on the anti-viral tag at the end of this blog entry to read more). I guess I assumed that the sluggish feeling that was a part of CFS was merely based in feeling poorly physically. I've heard many others on message boards mention the same experience - improved mental clarity after taking anti-virals. So, it is definitely a physical, bio-chemical kind of brain thing, apparently caused or worsened by the presence of infections. Whatever causes our well-named brain fog, I am hugely grateful to now experience large blocks of time without it.

And now, it's time to once again listen to my body. My sore throat is getting worse, even in the recliner with the laptop. Time to stop trying to work and get flat on the couch.

Lyme Disease Update

Sorry I didn't have time to write again last week as I'd promised. My husband is in Europe on business for a week and a half, so I've had my hands full taking care of the house and kids. In fact, I had to just sacrifice today to the couch and bed. By 8 am, I was already exhausted from our busy weekend!

I wanted to give you an update on my Lyme treatment - hopefully, my last Lyme update. I saw my doctor last week, and we are hopeful that I'm coming to the end of my ordeal with Lyme. I finished one antibiotic (Zithromax) and have another week left on my two-month supply of the other (doxycycline). More importantly, I'm finally feeling good again. I've now had about two weeks of feeling quite good - seems like back to where I was earlier this year, before Lyme struck. I haven't had any knee pain at all in almost 3 weeks. My doctor is not 100% convinced that we have completely eradicated the Lyme bacteria - I never did test positive on any of the tests run - but she said we'll see what happens when I finish the doxycycline. If my symptoms come back, I'll need to go back on antibiotics.

As a quick recap for those who haven't been following my blog the past few months....
I have had CFS since March 2, 2002. I got Lyme this summer; my symptoms began in mid-July. Although CFS and Lyme often have very similar symptoms, I am quite sure my Lyme was a recent infection because:

• I have never had any joint pain before with CFS. When I got Lyme this summer, I had sudden, severe knee pain.
• I am one of the fortunate few with CFS who has never had severe cognitive dysfunction, only mild symptoms, like difficulty with word-finding and brain fog when I'm badly crashed. Long-term Lyme affects the nervous system and causes severe cognitive problems.
• I was actually mis-diagnosed with Lyme back in 2002 when I first got sick. I took 90 days of doxycycline at that time, under the care of an Infectious Disease specialist, with absolutely no effect at all.
• My CFS has improved quite a bit over the past 6 years, especially in the last year with anti-viral treatment and low-dose naltrexone. Lyme left untreated with antibiotics would get progressively worse.

I had no bulls-eye rash with Lyme (only a small percentage of people do) and was not aware of a tick bite (again, many people with Lyme aren't), but we spent 3 weeks outdoors camping and hiking in June and July on our vacation. Besides, a recent CDC study showed that Delaware had the highest per capita rate of Lyme of all 50 states from 2004-2006. It's almost an epidemic around here.

The first signs of Lyme are usually flu-like symptoms, but this wasn't true for me. I felt fine until my knees suddenly started to hurt. Joint pain is considered a sign of Stage 2 Lyme Disease. My 14-year old son has had Lyme twice before, and his first symptom was also knee pain (at the same time as flu-like crash symptoms). So, I wonder whether CFS's immune system abnormalities mask those very early symptoms of Lyme.

My knees had hurt for about a month when I started antibiotics, so the Lyme bacteria had a chance to possibly penetrate my tissues. This is part of what makes Lyme difficult to treat, unless it is caught very early, and also what makes the blood tests for it so inaccurate; the Lyme bacteria does not stay in the bloodstream but penetrates tissues and "hides" there.

All in all, I took doxycycline for 8 weeks and Zithromax for 3 weeks. Hopefully, that will be it for me. We'll see what happens when I finish the doxy next week. For now at least, I'm feeling much better and have been able to resume my "normal" life. I never thought I'd be glad to "just" have CFS!

More information on Lyme and CFS here.

New Stuff!

After coveting all the cool features of other people's blogs, I finally realized I needed to update my very old template in order to have some of that myself. It was easier and less painful than I thought, and now I've been able to add all kinds of cool stuff - a list of links, RSS feed (which I still don't completely understand), and the ability to find my blog entries by category/label.

When I have some extra time, I'll peruse all the other features now available.

Oh, boy - how exciting to be up-to-date for a change!

By the way, I've been doing much better the past week or so and think I may have finally licked Lyme disease. I'll provide a full update on Thursday, after a check-up with my doctor and review of the latest lab results.

An Epiphany

Last week, I wrote here about play and having fun, and this past weekend, I got to see for myself why these things are so important, especially in a life partly defined by illness.

My mother and her husband, Ed, came from Connecticut to spend the weekend with us, and we had a full schedule, with two soccer games on Saturday and a big homemade pasta meal my mother had planned for the kids to help with Saturday evening. On Sunday, my husband and Ed took the boys to a NY Jets game in New Jersey, while my mother and I took the train to NYC to see a Broadway show.

As often happens when we have guests, I overdid while preparing for their visit and didn’t feel well on Friday and Saturday. To make matters worse, I was very worried that Sunday would be too much for the boys and me. I wondered whether spending the day at the football game would cause one or both of the boys to crash, after playing soccer on Saturday. As for me, I’ve had a rough few months lately fighting Lyme disease, and I really doubted my ability to make it through a day-long trip to NY when I hadn’t gone without an afternoon nap in years. So, I really didn’t enjoy any eager anticipation of this treat that my mother had been planning for so long.

All my worrying was for nothing. The boys had a blast and were both able to go to school on Monday. I rested as best I could on the train and ended up thoroughly enjoying lunch, the show, and dinner with my mom. We saw Wicked, which I’ve wanted to see for a long time, and it didn’t disappoint. There is just nothing like seeing a live show – the music, the dancing, the costumes and sets. It’s exhilarating and transporting.

Throughout the day, I was still constantly aware of my limits and restrictions, always noticing my symptoms and modifying my actions to account for my illness. But at some point, I started to relax a bit and actually enjoy myself. I love visiting NYC, and I enjoyed the break from my daily routine.

By the end of the day, I became aware of how stressed and tightly wound I’ve been lately, of how rarely I do have fun or play. I also realized how difficult I’ve been to live with, carrying around so much constant worry (and lately extra pain, too) that I’ve been like a dark cloud over our house. My husband and kids have been understanding (as we all are, with three of us in one house with CFS), but it suddenly hit me that our family has not had much fun lately.

Now that I’m back to my normal life (and I survived my big day without crashing afterward!), I’m trying to remember what a difference my attitude makes. It’s going to take some work to break bad habits, but I want to try to worry less and relax and enjoy myself – and my family – more. It’s not always easy, but I know this will not only make me happier but help me to feel better physically as well.