Clueless

I have been doing oxygen therapy for over three weeks now. Is it helping? I don't have a clue. I have had flu-like symptoms for almost two weeks -- persistent sore throat, sneezing, sinus pain, nausea. I know that's normal for most people with CFS, but it isn't typical for me. Sometimes I get a sore throat from overdoing it, but it's usually mild and only lasts a short while. Is this that hopeful worsening of conditions that indicates I'm actually getting better? "Die off," or something like that? Or did my kids pass on the actual flu to me, and I just can't get rid of it?

I think clueless pretty much sums me up. I surf the internet incessantly, trying to know what is going on with me. I'm desperate for improvement. I'll try anything. And I do try everything. I take the right supplements. I follow the CFS rules. I convince myself I have a modicum of control. I believe if I just ... then I'll get better. Maybe not all the way better, like I once thought, but at least a little better, right? Right? No. I keep slipping, slipping, slipping, down this nasty slippery slope.

Adding a Twist

I've known for awhile that I needed to change my eating habits. It is a very good possibility that I have candida overgrowth. Plus, I'm susceptible to hypoglycemia. I know that stabilizing my blood sugar will help me keep my energy stable, too.

So, I have just finished a juice detox, and I am starting a low carb diet. I've done South Beach before, and I always feel good when I'm eating that way. I'm going to add a lot more leafy vegetables. I'm taking garlic, oil of oregano, and probiotics for the candida. Goodbye sugar, white flour, regular pasta, sweets. Oh, except I think I'll keep my daily doses of dark chocolate -- you know, for medicinal purposes!

I've also started taking a magnesium supplement, and I want to boost my glutathione levels. I'm looking at a couple of different supplements to see which would be best.

Does anyone know any more tricks for fighting candida? From what I've read, that's about it, but I'm always open to suggestions!

WOW! Could This Be Possible?

Dr. Kenny De Meirleir announced today that he has unlocked the mystery of ME/CFS.

http://www.prohealth.com/library/showarticle.cfm?libid=14579

Not only does he say he knows what causes it, but there will be a simple urine test available, most likely over the counter, for diagnosis. And then ... treatment? Cure? Is this possible?

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?

Is it Cancer -- Or Wishful Thinking?

Can undiagnosed skin cancer cause chronic fatigue? I've noticed I have several suspicious-looking moles. It's not surprising -- I've had palish skin since I was a child. I grew up in Southern California before sunscreen was heard of. As a teen, SPF 8 meant you were a wimp! Sun tanning oil was the rage. Every summer, I would get my traditional sunburn, which would then peel off and allow me to tan. I am a prime candidate for skin cancer!

So -- is it possible that I really don't have CFS at all, but instead skin cancer? Then, all it would take is getting rid of a few moles, maybe a little chemo (which they say is about as bad as CFS, anyway), and then voila! I'm all better!

Do we all have these fantasies? Is it denial?

I Think I May Be on to Something Here

Thank you to Jo and Rachel for a very informative discussion on rest. I have been pacing ever since I discovered the technique; however, I have never actually taken scheduled, lying down with your eyes closed rests. After reading their posts and overcoming my fears (what if I fall asleep and can't get back up? what if I'm incapacitated and not around for my kids? what if it messes up my circadian rhythm and I can't get any sleep at night?), I decided to give it a try. So, I have scheduled two 30 minute rest periods into my day. I go upstairs, turn on some classical music, put on my spa sleep mask, set the timer, and REST.

So far, the results have been amazing! My fears were, not surprisingly, unfounded. Most of the time, my mind is still racing (although I try to keep away from worrying), so I don't actually fall asleep. 30 minutes is the perfect amount of time. It cuts off the energy drain and gives me a little bit of a boost. I'll know better this week, but I think it helps me rebound from difficult days a little better. I'm still getting to sleep ok at night. My kids have thus far survived without me for 30 minutes at a time.

I have been trying to develop a wellness program to help me inch my way back to recovery. I think this may actually be a big piece of the puzzle. I'm feeling very hopeful that I have one more tool in my toolbox to manage this disease.

It's A Miracle!

This had better not be a hoax!!! My life-long love affair with chocolate is suddenly not only being validated, but (gasp!) prescribed for my chronic fatigue? There is a God, He has a wonderful sense of humor, and I love it when He sends gifts!

Chronic Fatigue Syndrome Symptoms Reduced By Dark Chocolate Consumption

Hope and False Hope

I was feeling so hopeful since I started seeing my chiropractor. I was finally starting to feel better. I had fewer headaches, I was more relaxed, I was getting more restful sleep. I found myself with extra energy during the day. A barely acknowledged thought kept raising its head in the back of my mind, "Can this be it? Am I going to get better?"

Ah, but the holidays. The sneaky little holidays! Thanksgiving alone has sent me back to square one. There is no end in sight until January 1st. I know how to pace. I know how to take care of myself. But, between now and the end of the year, there are so many things that I HAVE to do. OK, I don't have to, nor do I want to, but I will. I will go to a Christmas party here and a school performance there. I will bake cookies and take them to neighbors. We will visit Santa. We will drive around looking at lights. I will do all those things that make the holidays special to me and my family. And sometimes, I will find myself enjoying the occasion and feel grateful I did this. But I will be putting healing on hold for a little while.

Meanwhile, I started Immunocal. Either it will work, or it won't -- I'm not anticipating any placebo effect, because I don't really believe that whey protein is the magic bullet that will make this go away. Prove me wrong, please prove me wrong! Dang, it tastes nasty, too.

A Good Hurt!

I went to my chiropractor/holistic practitioner/sports medicine practitioner again today. Another slight adjustment (still creeps me out!) and a fantastic myofacial massage! I just feel so good after that! It hurts like crazy, though -- especially when she does what she calls her "elbow work" (yes, it's just what it sounds like. She digs her elbow into my back along my spine. OUCH!). She is able to go deeper now, and I am tolerating it a lot better. Then, my reward -- I get endorphins! Lots and lots of fabulous endorphins! I leave with this aura of peace and serenity. It feels so good! I went to the store right afterwards, and a nice young man smiled at me. Not only did I notice, but I smiled back! The sun is shining, the sky is bright blue, it is a beautiful day, and I bought chocolate! I am going to relax and enjoy this for awhile.

Hope Raises Her Timid Head

Rom bumped into a chiropractor at the store the other day. She had had (yes, past tense!) chronic fatigue syndrome and fibromyalgia. She said that she overcame it using a supplement called Immunocal from Immunotec.

Now, I am extremely skeptical. It looks like it's just a protein supplement, and it's very expensive. But she swears, swears, swears that it made her better. She also said that the improvement was nearly immediate -- within a couple of weeks. So, on her recommendation, I'm going to order ONCE -- give it a try -- and see what happens. If it works, I'll be dancing in the streets! If it doesn't -- well, I won't have to keep using it for months to see if it finally kicks in.

In the meantime, I'm going to be adding all the positive lifestyle changes that will support healing -- pacing, good diet, graded exercise, good sleep, stress reductions. Even if it isn't the miracle for me it was for her, I'll still be in a healthier, happier place.

Wish me luck!

Bad Medicine

I ran out of melatonin a couple of days ago, so I decided to try traditional sleep medicine instead. I chose some generic brand liquid gels. Well, it didn't help me get to sleep at all; my mind was racing with business stuff, and it took awhile to finally fall asleep.

I think I slept soundly, pretty much, but oh my gosh -- waking up was brutal!!! I couldn't do it! I try to get 8-10 hours of good sleep a night; more than that, and I never quite shake off the sleepiness. I finally dragged myself out of bed at 10:00 am, after a good 12 hours of sleep. I could barely make my bed. I know I did yoga, but I don't think I finished it all. I can't remember doing the final back stretches and corpse pose. Did I stop in the middle? Did I get distracted? I just don't know.

Bad medicine! Bad! You are heretofore banished from my home. I'm going shopping for more melatonin today.