The Exercise Question Revisited

I have to admit -- during my relapse, the amount of exercise I engaged in shrunk to nearly nil.  Just a sporadic bit of yoga, that's all.  And, I think I paid the price.

When I reached the peak of pain and deconditioning, I knew it was time to revisit the question of exercise.

Here's my theory:  Managing pain consumes a lot of energy.  If exercise helps eliminate a lot of my pain, then I would then have that energy at my disposal for fun stuff, like showering or making my bed.  Also, it takes a lot more energy for my deconditioned body to do activities than a body in good condition would.  If I improve my strength and endurance, again I will be making my body more energy efficient.  It seems to me that exercise is an important part of my recovery.

Yet exercise is risky and fills my heart with fear and trepidation.  I know what happens when I do too much too fast.  I would have to proceed with caution.

I decided that exercise needed to find a permanent place in my daily routines.  Recognizing that it has a high energy requirement, I would simply have to scale way back on all my other activities in order to fit it into my energy envelope.

So, I added morning stretches/isometric exercises, modified from the book I have, Pain Free.  I also do yoga before my morning rest.  And, I bought some of those negative heel exercise shoes that I wear all day.

I did feel a push back from it when I started, but it didn't cause an outright crash.  I just had to scale way back on my other activities.  I've adjusted now.  And I've tolerated a slight increase in my morning stretches.  My pain has diminished.  I don't feel like I've made a lot of progress in conditioning, but hello!  Patience, child.

I think I'm on the right track.

Too Much, Too Fast

Yeah, I'm probably the only one who has done that, right?

In fact, I bet most of you were expecting this post after my last, highly optimistic post.

What is it about a sudden burst of energy that catapults us into unsustainable activity?  Tsk, tsk, I should know better by now.

Well, I certainly took advantage of feeling a bit better.  Pain has become a bigger issue for me lately, and so I revved up my exercise program a little to counteract it.  Nothing aerobic, of course -- just a bit more stretching and strengthening.  I have to admit, it felt soooo good!  I just should have taken it a little more slowly, and not added quite as much as quickly as I did.

The other problem I ran into was a renewed interest in cooking.  I've always enjoyed cooking -- not every night, necessarily, but I loved trying new recipes and using my lovely family as guinea pigs.  Plus, since  my new haircut, I decided I wanted to lose a little weight to look even more fabulous.  Since I can't exercise my way down to my goal, that means eating better.

I discovered some wonderful freezer recipes, and I could not contain my enthusiasm.  I've made Lazy Lasagna, Ham and Cheese Ziti, Spinach Soup, Chili, Tex Mex Rice Casserole, and Chicken Divan.  (I've got all the recipes on my recipe blog, The Flagging Chef.)  So, now I have eight dinners and seven lunches in the freezer, ready for those nights when I don't feel up to cooking and usually order pizza.  They are all pretty easy recipes.  I did all right on those days I had my kids helping me cook.  I got a little crazy and made the Tex Mex Rice Casserole all by myself, and that was a big mistake.

Add to that a big stressor for me:  We're going to have someone come in and clean once a month.  She came over for an initial consultation on Friday.  I am humiliated by my home.  Back in the day, I took pride in the fact that although my house was occasionally cluttered (six kids, you know), it was never dirty.  Now, once you get past the clutter, it is very dirty underneath.  This is long overdue, but getting started is a horribly emotional ordeal for me.  She starts on Wednesday; I know the payoff will be worth it.

So, I'm not exactly in a crash.  That alone tells me I'm still on the mend.  I just need to remember that the road to recovery is a bumpy old thing.  I need to slow down and scale back a little.  Be gentle with myself.  Have a little chocolate.

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!

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!

Quest

(on a side note -- I used to love Jonny Quest!)

I've decided that I am on a quest. Before chronic fatigue, I was not exactly a health nut, but I loved being healthy. I never felt better than when I was a young adult with a gym membership. My husband met and married me because of that hard body! (Yeah, maybe for a few other reasons, too. ;) Even once I started having babies and couldn't make it out of the house regularly, I still maintained a work out routine from home. Exercising just made me feel so good.

Needless to say, since chronic fatigue, my exercise routine fell to zero. I lost muscle, and my body fat percentages sky rocketed. I added some gentle yoga, but it was more for relaxation than anything else. It didn't seem to help my growing belly and bottom. In the back of my mind, there's this little voice that keeps telling me that no exercise at all just isn't right! It is unhealthy, and I'm afraid that if I stay here, I will be working against my body and hindering my recovery.

So, I am on a quest to find out how to exercise without triggering post-exertional malaise. I have some ideas -- it seems like prolonged aerobic activity is the culprit. Perhaps intermittent "spurts" of aerobic activity with rests in between to return the heart rate to normal would be tolerated. I actually tried this on Saturday at my mom's house. The kids were all swimming, and I was sitting in the shallow end taking it easy. Finally, I couldn't take it any more, so I swam a lap. Oh, such daring! I let my heart rate come back down, and then I did it again! I got at least five laps in that way. And I didn't crash that day, or the next. Maybe I'm onto something?

Disclaimer: I do have CFS, so my "experiments" are completely dependent on pacing and how I'm feeling day to day. Don't expect any "results" to magically appear any time soon!

Whammy!

Wow! I haven't had one of those days in quite awhile!

Yesterday was my day to mind the store. I always hope for a quiet day at work, but alas, it was not meant to be. I had several customers throughout the day. One customer in particular was pretty demanding, not only physically but mentally as well. He was a nice fellow, and it turned into my biggest sale of the day, but it also took a lot out of me. He kept me on toes ... and my feet! ... for the better part of an hour.

After work, I went to my daughter's awards ceremony. My oldest is graduating from high school with honors, and she was receiving a scholarship award as well. I'm very proud of her -- what a good example to set for the rest of my brood! I wouldn't have missed it for the world. However, I was a bit late arriving since I was coming straight from work, and so I had to park in the farthest parking lot. There was a steep hill I had to climb to get to the venue. I have not had a workout like that since my pre-CFS days!

I had no idea that the awards ceremony would last -- are your ready for it? -- two hours! We were huddled on benches as the temperature dropped and the wind picked up. My muscles were tensed trying to generate warmth. My back was aching, and it was nearly unbearable!

By the time we got home, it was after everyone's bedtime (mine included). As I was getting ready for bed, I noticed my pedometer -- over 5300 steps! To put that in perspective, before CFS I was averaging 5000-6000 steps a day, with a busy day pushing 8000. Since CFS, 3000 steps is a busy day. Today, I have 489 steps so far. :) I fell asleep almost immediately, and I slept like a rock until 9 am this morning.

Here's the amazing thing: I thought I would be headed for a crash for sure! And yet, I am feeling surprisingly good. My energy is steady, I'm not sleepy, and I haven't felt like I need to be horizontal. I'm not feeling any post-exertional malaise. Granted, I am having a super slow day (hence the 489 steps), but still ... I must be doing something right if I've tolerated that kind of day so well.

Hmmmm ... hopeful?

ME/CFS Awareness: Managing CFS

There is no treatment for CFS. You treat the symptoms; you manage CFS.

I currently do not take any prescription medication. I have in the past, but it was either not helpful or made things worse. Sadly, the medical community has not been my best friend when it comes to CFS.

So, here is what I do to take care of ME (get it?):

1. PACING!!! There is no drug or supplement or protocol that has done more good for me than pacing. My quality of life skyrocketed once I found out that you can not "push through" CFS. I still make mistakes ... and learn my lessons ... but overall, I do pretty well making sure I get plenty of rest between high exertional periods. It has allowed me to go from being a zombie 24/7 to being lucid and functional 3 to 7 hours a day.

2. Formal, scheduled periods of rest. This is a bit different from pacing, I think. Twice a day, regardless of activity level or level of fatigue, I rest for 30 minutes. I go in my room, put on my migraine/sleep mask, set the timer, and just rest. I try to add a little deep breathing and maybe some light visualization for relaxation. But I don't push it. Sometimes my mind races for the full 30 minutes; sometimes I fall asleep. Usually it's somewhere in between. I usually feel much better afterward, but if not, it's a great gauge that tells me I need to slow down a little more.

3. Supplements. I discovered pretty early on that you can be so desperate to get rid of CFS that you'll spend a small fortune to try anything! I use a little more restraint now. My rule of thumb is that it has to either be obviously effective or good for my overall health. At night, I take a multi-vitamin, calcium, magnesium, fish oil, and melatonin. In the morning, I take a mega dose of B12 sublingually, CoQ10, and a B complex. I take .75 oz. of dark chocolate twice a day, after my rests. I have begun taking additional anti-oxidants, including CoQ10 in the afternoon to see if it helps with my afternoon slump. I had been taking NADH, but I stopped for a few weeks to see if it was helpful. I think it was, so I'll start taking it again next week. I'm also going to be testing electrolytes and d-ribose.

4. Exercise. Right now, I do about 15 minutes of stretching daily to ease pain. I am hoping to begin adding 5 minutes of cardio. No panic, just something very low impact that I can monitor and pace carefully -- probably rebounding (mini-trampoline) because it has the added benefit of flushing the lymph nodes and improving the immune system.

5. Diet. OK, I have to admit this is more theory than practice at this point! Although I have made some progress by eating healthy dinners. I have easy, healthy recipes that even my kids can make if I'm not up to it (see my other blog, The Flagging Chef, sidebar). The next step is to cut down on the sugar and other high Glycemic Index foods so I have a more steady stream of energy. Ha! We'll see.

Did I leave anything out?

Achievements!

First of all, I am very happy with the progress I am making on my website! I wanted to do one page per week (resulting in at least 52 pages by the end of the year), and I'm already at 39 pages! More importantly, I just completed a section for ME/CFS Awareness. Please take a look and tell me HONESTLY what you think. I can always edit it if you find any flaws or have suggestions, which I would appreciate. You can find it here:

http://www.chronic-fatigue-community.com

I will be using this information in an e-mail campaign I am trying to get my courage up for. I'm going to send an e-mail to all my friends, family, and acquaintances that explains my situation and asks them to do three things: 1. Read the "Understanding CFS" article on my website; 2. Donate $1 to CFIDS.org; and 3. Forward the e-mail to everyone they can. I have given myself a deadline of May 1st to do this, so I can tweak the website a little more and compose the e-mail. Really, I'm just nervous, so I'm buying time. If I get my courage up, I'll do it earlier.

I'm about on track with my recipe blog, The Flagging Chef (see sidebar). I have 86 recipes, and I have a slew more that I'm ready to post. I've put together three weeks of recipes and shopping lists, and I'm working on one more today. That should give me a full month's worth of healthy eating without all the trouble of planning.

I've started a new series of stretches that is helping with my chronic pain. I'm also going to start a tiny bit of rebounding today before my rest period. I'll keep you up to date with how that is going.

So, I'm giving myself a pat on the back today! And who doesn't need that once in a while, hmm?

Exercise Experimentation

I know that the very thought of exercising causes fear to strike the hearts of many people with CFS. However, I think that it is important not only for overall health, but it may help in CFS recovery. So, I am on a quest to discover how to fit exercise into my daily routine in a way that will NOT make me crash and lead to a post-exertional malaise.

I already do morning yoga, and I tolerate it very well. I wake up sore and achy, so I love the stretches to get the kinks out. It's a wonderful way to start my day!

I am going to add a tiny bit of aerobic exercise -- I am going to rebound (mini-trampoline) for 5 minutes. (Actually, it is a one minute warm-up, then three minute bounce, then a one minute cool-down.) I have read that it is better to try to work out in the afternoon rather than in the morning, so I am going to schedule it around my afternoon rest.

So, here's the question -- do you think it would be better to exercise before my rest, or after? Should I be well-rested before I begin, or would it be better to rest to recuperate? Does anyone have any experience with this? Or do I need to try it both ways and report my results?

Wish me luck!