Note to Self: Stupidity Causes Setbacks

Well, I did it.  I pushed too hard too soon.  I attempted a visit with my sister that required an hour and a half drive each way.  I rested once while I was there, but it wasn't enough to undo the damage.  I crashed hard, and I haven't been able to get back to that blissful feeling I had been enjoying while on the meds.  It's been three weeks, and recovery is slow.

I haven't fallen all the way back to square one.  I'm still better off than I had been over the holidays and with the move.  It's just that feeling improvement and then having it slip from my fingers is frustrating.  I know what it feels like now.  I want it.  I hunger for it.  I stamp my feet and shake my fists when I can't have it.

I have started using essential oils as a supplemental therapy for treating symptoms.  Lavender helps a little bit with sleep.  I'm going to be adding marjoram this week.  It's supposed to have a sedative effect.  I'm hoping that between the two of them, I'll be able to stop taking the over-the-counter sleep aid I've been using.  I use a digestion blend for stomach problems, and it works fantastic.  I've also been taking oregano to fight infections, and an immune-boosting blend.  I have a pain relieving blend that works pretty well if I remember to use it at night.  I wake up with much less achiness.  I've started using cypress for circulation and the jury's still out on that one.  And I've been diffusing citrus oils, wild orange or a blend, which helps disinfect the home and smells delightful.  Citrus is supposed to relieve anxiety and have anti-depressive qualities. 

I don't know if all the oils will work, but like I told my sister-in-law, at least they smell good.  :)

I'm going to switch to a new brand of supplements next week.  It's a complete system of vitamins, minerals, fish oil, and antioxidants.  They claim that it should help with mitochondrial production, inflammation, oxidation, and glutathione production.  All stuff that is helpful for CFS.  They also claim that you're supposed to be able to feel the difference pretty quickly.  If that's true, I'll share the brand name with you all.  If it's not true, I won't bother.  I'm hoping that it may help me rebound from my relapse a little faster.  Help me get back to my state of nirvana.  (OK, I'm exaggerating, but comparatively speaking, that's what it feels like!)

Friday was the last day of school, and we had a few friends over for a casual pool day.   Everyone had a good time, but of course, I paid for it afterward.  I'm looking forward to the day when I can enjoy these activities without fear.  I'm excited that we're moving into summer, because it's a much more relaxed time for me.  I enjoy having my kids home.

Hugs to those of you who are not doing well right now.  You are in my thoughts and prayers.  I hope the sunshine of the season brings healing to you.

Improvements

After 2 1/2 months of XMRV treatment, I definitely feel better.  My need for rest has diminished quite a bit.  I still force myself to lie down twice a day, but I'm often antsy and peeking at the clock around the 20-minute marker.  I am sleeping less.  I don't seem to require 10 hours of sleep in order to feel good.  Often, I will wake at 6 am after 7-8 hours sleep, and I'll be unable to doze again. 

I feel uplifted, happy, almost exhilarated.  I find myself smiling a lot more.  It's like a weight, a fog has lifted from me.

I still have to be careful with activity.  I shopped WalMart the week before Easter.  It was way too big an outing for me; I should have started with something small, like a trip to the corner grocery store.  But I find that I'm chomping at the bit, eager to push the envelope just a little bit to see what happens.  Did I crash?  Um, yes, yes I did.  It was a big one, but it only lasted one day.  A crash like that would have normally taken me at least a week to recover from, if I indeed ever fully recovered.

I'm doing more around the house.  Not that much more, but noticeably.  It's interesting how I had unconsciously been conserving energy, calculating the most energy-efficient way to do anything.  I watched my husband put on his shoes one morning.  He picked one up, untied it, set it down, did the same with the other shoe.  Then he picked up the first shoe, put it on, and put on the other shoe.  I was amazed that he didn't realize that he was wasting so much energy by putting the shoe down and picking it up again.  I never would have done that!  Likewise, I always made a beeline for the nearest chair whenever I entered the room.  If the phone rang, I'd wait until one of the children handed it to me.

Yet, twice this week -- twice! -- I found myself pacing while talking on the phone.

The other thing that I've noticed is that I am tolerating social interactions much better. I've been out to dinner with my husband twice without any negative repercussions.  My sister-in-law dropped by and stayed a couple of hours.  I was exhausted, but it didn't cause a crash.  I can handle a drop-in visitor for about an hour now.  Talking on the phone is still challenging; I'm good for about 45 minutes of that.

Meanwhile, I'm enjoying creative pursuits with my writing, and I've started using essential oils for symptom relief.  I haven't been using them long enough to report anything, but so far I've found a couple that seem promising for pain and stomach problems.

Happy Mother's Day to all you Moms out there! 

Follow Up Doctor's Visit

I met with my doctor yesterday, and I have to say, it went swimmingly!  My labs show no toxicity, and he said we would have seen something already if there were a problem.  I am tolerating the meds very well.  He asked if I have noticed any changes yet.  I told him that I have moments where I feel very good, but they evaporate pretty quickly.  Before, I would have a very distinct energy envelope between mid-morning and early evening where I felt fairly good as long as I kept within my restrictions.  This is different and unpredictable.

He said he noticed that I got up on the exam table easier than I did at my first visit.  I was impressed that he had not only noticed but remembered.  So often, you feel like a blank face on an assembly line, and you wonder if the doctor even looks up from your chart.  I think he is becoming more and more interested and excited in our little experiment.

I can't say that my capacity for activity has necessarily increased, although I did spend almost two hours on my writing project the other day.  I got rather caught up in my story and didn't even notice the time.  I was pretty wiped out afterward, not surprisingly.  But no crash the next day.  I don't know, there may be some minute improvement, but it isn't big enough to quantify yet.

The doctor renewed my prescription and gave me two refills.  I don't have to return for three months.  By then, I should definitely know if the meds are helping at all.  If not, I stop treatment.  If so, we continue.  Fair enough, right?

My mantra these days is "We'll see, we'll see." 

Week 1: Worse Before Better

I have been taking XMRV treatment for one week now.  I expected to feel worse before I felt better, and I think that is true.  However, it is more of a dip than a plunge.  I take the pill at night, and it does make me feel sleepy.  Now, for those of you familiar with CFS sleep disturbances, you know that this is actually a good thing!  I find I am able to drift off to sleep much quicker than usual, and I"m sleeping more deeply than I have in the past.  However, I'm sleeping longer than I had been by about an hour, and I am slow to get going in the morning.

My energy levels have become unpredictable.  I was used to a reliable "energy window" that would last from mid-morning to early evening most days (unless I overdid it).  Now, I'm finding my energy in bursts.  I'm sluggish; then I suddenly feel pretty good; then my energy abruptly disappears, only to come back again a little later in the day.  I'm riding it out.  I am careful to not overdo it when the energy is there, but to pace myself as usual.  When I feel deflated, I rest.  I've been spending more time in my bed than I usually do, not necessarily crashed or even officially resting, but just kicking back.

I'm not getting much done these days; there are still boxes waiting to be unpacked, but those will wait.  On the flipside, my household is not descending into complete disarray.  I'm still able to do minimal activities like laundry and nagging the kids.  I haven't felt the need to call for additional help, like I was afraid I might have to.

I haven't exercised since the move, for obvious reasons.  No stretching, no yoga.  I think I'll try to ease back into the yoga.  See how well I tolerate it.  I hope I do OK, because it helps so much with pain management.

Ha, once again, all I can say is we'll see, we'll see.

XMRV Treatment: First Impressions

So, it's been three days since I began XMRV treatment, and so far... well, not much, really.  My throat is a bit more sore than usual, and I feel a bit more achy, especially in my upper arms, neck, and hips.  Is that the "inflammation" that people talk about?  Also, I feel a little more sleepy than usual.

I don't seem to be having any negative reaction getting on the medication.  I haven't noticed any side effects related to it, like nausea, diarrhea, or insomnia.  The other effects could very well simply be because I've been doing a lot of push/crash for the last month.  First the move, and then my birthday was on the 10th, and I broke a lot of rules that whole weekend.  I crashed on Sunday, but I felt pretty good yesterday.  I had that little bit of energy that makes me wander around the house picking up things.  Good times.

I've been asked what kind of medication I'm taking, and what dosage, but I don't think it's a good idea to mention specifics at this point.  I'd like to wait and see what kind of results I get before first.

I will, however, mention the supplements that I'm taking that I'm hoping will improve my chances of success or extend any gains I might make.

Currently, I take Trader Joe's multivitamin, vitamin D, probiotics, fish oil capsules, denatured whey protein for glutathione, d-ribose x3 daily, melatonin, and generic acetaminophen PM.  I just ordered some sublingual B12 tabs and l-methylfolate, for methylation.

Hm, other than that -- I had a lovely Valentine's Day!  The kids helped make our special breakfast for dinner, and my husband treated me to See's candies.  I hope you all had a wonderful day, too!

It's Here!

The new medication finally arrived today...and I panicked!  After all my determination and tenacity, the moment of truth has arrived.  I am not ignorant of the risks involved.  And I find myself asking, Am I really that bad?  Do I really want to do this?

I mean, I've adjusted to my situation.  I've got so much help.  And things are better here; without the stairs, I'm finding that I'm bouncing back much more quickly.  Of course, "back" means just getting out of bed and able to take a shower.  I'm still housebound.  I still can't get out and visit with friends.  I still can't go to church.

It's time.  It's time to do this for me, to do this for my family, to do this for everyone out there suffering with no hope.  Maybe I can be a piece of the puzzle.  Maybe I can be a part of finding answers, answers that have been so elusive for so long -- long before I first became sick.

And maybe, just maybe, I'll get better.

Bumps In The Road

I like this picture, because even though the road is "bumpy," it looks like it's headed in the right direction.

I had my doctor's appointment yesterday.  He agreed to give me a one-month trial.  One month, and if there are any negative side effects, he's pulling the plug immediately.  One month, and he would like me to be very honest in my assessment of my symptoms at that point.  He was careful to make sure I shouldn't get my expectations up.  He emphasized that it was very possible that I will not see any improvement.

I was thrilled.  I feel like his approach is the safest and best I can hope for.  He is exercising every imaginable caution.  He is making sure that my health is top priority, and if he ever feels the risks of taking the medication are too great, he is going to stop the treatment.  I'm OK with that.  I left his office with a priceless piece of paper in my hands -- a prescription for hope.

Priceless?  Well, let me reword that.  It definitely comes with a price tag.  I found out that my insurance doesn't cover the medication, and that it would cost about $1200.  For one month.  I can't say I was surprised; I had already researched the drugs and knew it wouldn't be cheap.

So, I now have two options.  I can upgrade my insurance, which would increase my monthly premium.  I would still have a $750 pharmacy deductible that I would have to pay up front, and then the medication would be $60 a month.  Or, since I have no idea if I'll be able to continue taking the meds longer than a month, I could simply pay out of pocket now and wait and see.  I have an option for getting the medication cheaper, but it would require waiting about three weeks to get it. 

I'm leaning toward a combination of the two.  Pay out of pocket now, and then upgrade my insurance if it looks promising.  Upgrading my insurance is the better option if I add a second medication to my treatment.

Which all led to a meltdown this morning.  Why?  It's not just the financial stress this will place on us.  We've shouldered financial stress before, very successfully, I might add.  No, I can't help but wonder, is it worth it?  Which really means, am I worth it?

Ah, you think with time you overcome your teenage insecurities.  You accomplish things, you achieve things, you catch yourself feeling proud of yourself once in awhile.  And then something like this happens, and the old voices you have spent years silencing rise again to the surface.  The old voices telling me I'm worthless.

But what if I asked my children, "If you could have your mom back for just one day, how much would you pay?"  I think the answer would be more than a thousand dollars.  And if I asked my husband, "If there was the slimmest chance that you could ease your wife's suffering for just one day, how much would you pay?"  I imagine his answer would be close to a million.

Double Whammy

Close on the heels of my root canal, I came down with the flu.  It has wiped me out completely.  You know, prior to this, I never really connected that CFS "feels like" a bad case of the flu.  But this time, I noticed how the flu has amplified my CFS symptoms -- CFS on steroids! -- and I can now see the similarities.

I've been a lump on a log.  No writing.  No blogging.  No tweeting.  Barely any Facebook.  I'm hoping this week is a little more productive for me, but I still plan on taking it easy.

Getting the flu has also made me curious about the immune deficiencies of CFS.  I've heard about it but never really understood how it works.  I have noticed that although my throat and sinuses hurt, my body doesn't seem to be trying to get rid of the germs -- no mucous.  I've been doing a daily nasal rinse to compensate, and I think it's been helpful.  Hm.  I guess, after four years, there's still more for me to learn and understand about this disease.

Hope you all are doing well -- as good as can be expected, at least!  Enjoy your week of Thanksgiving.

A Different Kind of Ouch

Words that strike fear in the heart of any PWC (person with CFS):  I have a tooth ache.

It started Monday night, innocuous enough, but by Tuesday morning, it was raging.  I called my dentist, and they were able to squeeze me in yesterday at 3:30 pm.  Right in the middle of my scheduled rest.  :(

I was told I needed a root canal.  Hm, that's interesting, because the dentist I went to about five years ago was supposed to have done a root canal on that tooth.  Rip-off artist.  I guess that's what you get when you are in a new community and don't know how to get referrals to the good guys.

The procedure took about an hour and a half.  Luckily, I was able to ask for and receive nitrous oxide.  Ah, good ol' nitrous oxide.  At least it minimized some of the stress of the situation.  Hopefully, it will minimize my crash as well.

Because crashing I am!  I took pain medication last night before bed, but I woke at 2:15 am in agony.  Took more pills, but I awoke again at 5:15 am and had to wait another hour before I could safely take more pills.  I was grateful for the pain management techniques I had learned during my childbirth years.  I took another pill at 6:30 am.  Now I have to wait another hour before I can take another pill.  :(

Luckily, my kids are out of school for the long weekend, and I have no responsibilities I need to muddle through.  Just rest and recuperate.  I hope the crash is minimal and short-lived.  A root canal for a healthy person is traumatic enough; for PWCs, it's brutal.

Plan of Attack

We have not had insurance since my husband left his job and started our own business three years ago.  I was not overly concerned, because frankly, I was getting nowhere with the doctors, and I didn't feel like they had anything more they could offer me.  I figured pacing and supplementation were as good as anything medically offered.

The discovery of XMRV changed things for me.  So, last week, I purchased health insurance for myself.  As soon as I get my ID card, I'm going to meet with my doctor again.  I will first ask for Klonopin and LDN, two drugs that have been known to be somewhat helpful for CFS.  Then, I plan on getting tested for XMRV.  If I come back X+, I will be requesting to be treated with the HIV drugs that work against XMRV.

I don't mind being a guinea pig.  I don't want to wait for clinical trials.  My life has been scraping the bottom for about a year now.  This summer, I barely left the house.  I can no longer go shopping, and driving any distance is difficult.  I can't imagine that side effects from the anti-retrovirals could possibly be worse than what I am already living.  I strongly suspect that it will help me, and I don't like the idea of waiting, allowing the retrovirus to continue to reproduce and gain a further stronghold in my body.

Of course, I'll let you all know what happens as it happens!  In the meantime:  Has anyone tried Klonopin and/or LDN for CFS?  What have been your experiences?

Monty Python Must Have Been Thinking of Me

This looks a lot like my fight with CFS:




I think I'm at the stage of one-footed head-butting.

A Question for the Ladies

Guys, you can skip this post if a little TMI makes you uncomfortable.



All right, ladies: Is it just me? That time of the month seems to make my CFS symptoms so much worse. Everything is magnified, and the progress I've worked so hard for fades away for the week. The headaches, the fatigue, the moodiness, the achiness -- it's like PMS intensifies my CFS and CFS intensifies my PMS.

Have any of you found a way to tame the beast and keep the suffering at a minimum? Any strategies for holding on to the progress you've made during this time?

Did You Know Chocolate Helps CFS?

That's what they say, anyway! And I love any excuse for a little chocolate. In celebration of the wonderfulness of chocolate, I found this fabulous blog:

Dying For Chocolate

It's full of yummy recipes using chocolate. Just make sure it's a high percentage dark chocolate to get the full antioxidant benefits. I'm including it on my sidebar, if you ever want to visit again.

Inch by Inch

I think ... do I dare say it aloud? ... that I may be getting better! It's that ephemeral something that I can't quite put my finger on. I wouldn't say that my capacity has increased. It's just that, during the day I feel a little lighter, a little clearer, a little more present. My body is making more sense. When I've exerted myself, I feel worn out, and my rests are a little longer than usual. If I've had a quiet day, I don't feel like resting at all (see my last post!), and I have to force myself to stay in bed for half an hour. A few moments of activity aren't weighing me down for days; I actually feel like I'm bouncing back quicker.

Now, when I say bounce back, I mean back to my new normal. I'm still nowhere near where I was before the summer. However, I no longer feel like one of those rock climbers stuck on a cliff with nowhere to go, fearful that if I move I'll slide further down or even plummet to my death. I'm reaching, and I can see tiny handholds, and there is a slow, steady path ahead of me.

Determined to Do Nothing

I think I'm a smart girl.

I've had CFS for over three years. I know how to manage it, more or less. I know that I have to pace my activity; I know I need to incorporate rest every day.

Most days, I do pretty well. I have two scheduled rests during the day, one in the morning and one in the afternoon. I allow my body to determine the length of each rest period. It typically ranges from half an hour to two hours. It feels good, and I know it is good for me.

But ... there are simply some days when I become as rebellious as a two year old! I know I'm tired. I feel my eyes starting to itch. Maybe my eyelids are even drooping, and I'm fighting to keep them open. But I'm having so much fun! I am enjoying this day and don't want to miss a minute of it, let alone 30 to 120 minutes at a time. I'm an adult, for crying out loud! I want to stay up like a big girl.

Yes, I am an adult, and so I make the adult decision. I take my nap.

Past Fear and Frustration

I'm not happy with my many negative posts lately, but I understand where they are coming from.

You see, I thought CFS and I had an understanding. I play by the rules most of the time. Then, if something big or important comes along, I cheat! There is a mild punishment afterward, where I am immediately contrite and rest up for a day or two. CFS forgives me, and I'm back to "normal" within the confines of the rules.

And then CFS betrayed me. Or, perhaps it was the last straw. In any case, it stopped forgiving me, and left me sitting in the corner for a very, very long time. No amount of crying or whining has softened its heart and made it relent.

Thanks to Renee's recent post, I am now coming to terms with the fact that I am in a relapse, not a crash. I don't know how long it is going to last. I just know that this is my new "normal," and it's time to adjust my life accordingly.

If I look at it objectively, I can see what happened. Stress is the trigger for my disease. I can see how the unrelenting stress over the summer caused me to fall further down the slope. It terrified me, because I thought, what if I have another episode? What if I fall further? There isn't that much further to go. The next bout will send me to bed with severe CFS for sure.

Well, if that happens, there will be people to take care of me and my family. It is what it is, right? But I can't let fear rob me of hope. I need to continue to tackle this disease the same way I always have, and trust that I will eventually see improvement. Inch by bloody inch, that is.

So, I'm going to change my attitude! I will wake in the morning and force myself to physically smile. They say the physical act of smiling triggers endorphins. I could use some endorphins. I'm going to focus on gratitude, because I have so, so much to be grateful for! Of all the things that CFS has stripped me of, it has taken nothing from me of any real importance. I am loved. I am happy.

Some good news: I don't have to work at all the next three weeks! That should allow me to stick to a routine and consistently stay within my energy envelope. It this experiment is successful, I may not have to go back to work at all. :)

To A Healthy New Year

I've discovered I don't do the official New Year's resolutions anymore. I don't like lists of things I "should" do. Instead, I find that I ruminate a few days, get a feel for the new year, and decide what is important to me. I've decided that my focus will be on two things.

The first area of focus -- surprise, surprise -- is my health. I think back to the beginning of last year and realize how much I took for granted. I thought I could build up a bit of energy, then blow it all on some "big" event, and then rest up and rebound right back where I was before. It worked, too, for awhile. I was lulled into a false sense of security. Then, near the end of summer, I discovered that I wasn't rebounding anymore. I was in a sustained crash, and no amount of resting was making it better. This level of functioning became my new normal.

With frightening reality, I realized that if I continued this pattern, I could easily push myself into severe CFS. I had been playing Russian roulette with my health. I had been taking one step forward, two steps back, and the next step could land me in bed for good. I have to change.

My new approach is one step back, two steps forward. First, I didn't exercise at all during the months I was crashed. I thought it would help me recover. What I discovered is that I ended up in a lot more pain than I usually am. I recognize that exercising has a price, but I also know that for me it is indispensable. So, I've added light yoga and strength exercises to my daily routine. Yes, it takes up extra energy, but I need to make room for it.

Second, I stopped cooking during my crash. Which meant I ate a bunch of crap for months -- frozen, canned, processed food. I'm sure it added to my overall poor sense of well-being. I'm back on track with preparing menus, buying healthy foods, and cooking when I'm up to it or enlisting my kids' help when I'm not.

Third, I have drastically reduced my activities. I stopped going to church completely, although it broke my heart. No more book club. No more girls night out. No more school events. I rely more heavily on carpooling. I limit shopping to one day a week.

Fourth, I've started a new protocol. I'm trying d-ribose and oxygen therapy. The d-ribose seems to have a positive but not miraculous effect. The jury is still out with the oxygen therapy. If it is doing what it is supposed to do, then I am ridding my body of detrimental viruses and bacteria, which would naturally trigger a healing crisis. In that case, I would expect to see positive results sometime around February. I'll post more information about this, if anyone is interested.

My second area of focus is going to be my writing. I have dabbled with a novel since last year, but this is the year I am going to take it seriously. My goals are to finish my first draft of my novel and to become a published author. To that end, I have created a writing blog to chronicle my journey and to get some critical feedback. You are welcome to visit my new blog at http://shelli-proffitt-howells.blogspot.com/ . And, when I introduce my main character in a few days, I'd love for you to tell me what you think!

I started this blog because I was tired of feeling so alone with this disease. I couldn't have imagined the friends I would discover through it. Thank you so much for your kindness and support. It surprises me that I care so much for people I've never met. I know you are all facing the same struggles I face. You are in my prayers as I wish all of you a happy, healthier new year!

People's Health Blogger Awards

While visiting Sue's blog today, I noticed that she is up for a People's Health Blogger Award. I decided to vote for her, and I am putting a "Vote for Sue" widget on my sidebar. Sue's blog is one of the first I found when I discovered I had CFS and started blogging about it. I was so new and lacking in knowledge when it comes to this disease! Sue was always there to open my eyes and show me different paths to understanding just what was going on with me. It was from her that I learned about post-exertional malaise, orthostatic intolerance, and LDN. And she seemed a "success" story. Even though she still has CFS, she seems to manage it so well, and she still has a life! That is what I aspire to. So, in a way, I would say Sue has been my CFS mentor, and she has become a very understanding friend. I wish her the best of luck!

Adrenaline Junkie

I think I thrive on stress. Not the normal background soundtrack to my life kind of stress, but the in the moment kind of stress. Like when I speak in front of a large group of people, or I race to complete a deadline, or I handle a crisis fairly well. It's almost like I feel high for an hour or two after!

And then I crash. Muscle fatigue, extreme exhaustion, brain fog, headaches -- you're all familiar with it.

I think I've been cycling in and out of it for weeks now. I wake up in the morning, and I'm hit with the worries of the day, sending a rush of adrenaline through me that won't let me doze anymore. I scurry around getting the kids off to school, and then when it quiets, I rest. The rest brings on a crash, and I can barely get out of it! Yesterday, I actually had to sit down in the shower (I'm usually higher functioning than that). I called my husband and started crying before he even said hello. Not good.

Then it's time to pick up the kids and shuttle them to various activities, and I'm living on adrenaline again. We get home in the evening, and I have to ask one of my teens to put chicken nuggets in the oven for me. I try to interact and help the kids get their homework done or get ready for the next day, but all I can manage is a little half-hearted nagging. By the time bed comes, I collapse.

It is finally dawning on me that perhaps adrenal fatigue is a part of my CFS! (Duh.) Does anyone have a way of breaking out of the stress cycle? Is there a way to "talk yourself down" from an adrenaline high? I'm interested in opinions and ideas!

Exercise Experiment #1 Results

I put my theory to the test this weekend. Since my sister was in town, I took my kids swimming at my mom's house Saturday. The water was the perfect temperature! It felt good floating around a bit, but it wasn't quite enough. I decided to try just a couple of laps. I slowly crossed the pool and back -- leisurely, nothing too strenuous at all. I rested for awhile and made sure my heart rate was back to normal. I crossed the pool again; rested; then again two more times, resting in between. My body felt so good! My muscles loved the feeling of stretching and working just a little bit. It was wonderful. I came home and slept like a baby.

The next day, Sunday, my husband took all the kids to his sister's house and left me all to myself. That would be a treat on any day! But right after my excursion to my mom's it was wonderful to be able to completely relax and rest and do absolutely nothing. I felt pretty good through the afternoon, and then wham! Classic post-exertional malaise! Even after all that resting, I was exhausted. I knew it had to be because of the swimming the day before, because I obviously had done nothing to tire me all day.

In one sense, it was really good -- I've never been able to see much of a correlation between my activities and post-exertional malaise before, because I'm always busy and I often overdo things. I can never see a cause and effect relationship. This time it was crystal clear.

The bad news, of course, is that I have to be careful with any forms of exercise. (You already knew that, didn't you? I'm just a little hard-headed, I suppose.) I crave exercise, and I feel like I need to find a way to fit it into my CFS life. I'm going to keep searching for activities I can do without making things worse. I know that yoga is well-tolerated, so I'll work that back into my day again. My next experiment will be to see if I can tolerate tiny doses of aerobic activity broken up throughout the day -- maybe two minutes here, two minutes there -- until I can work up to 10 minutes a day total. (Dream big!)

I'll let you know how that goes!