This has been an ongoing battle over the last three years, trying to be aware of how long it is before sleep deprivation begins to severely effect my cognitive functions. At what point do I lose my concentration, hurt more, or start seeing my short term memory degrade? I can’t say yet, but I can say that keeping a diary and logging key points in my day has helped — if only I could be consistent. It still doesn’t help solve the problem of leaving for the bank and ending up at the store, but being aware that I’m sleep deprived does help keep the panic to a minimum. It’s easier to recognize I’ve missed a step or overshot the runway and I’m able to sit for a few minutes, focus on the problem and resolve it.

I’m trying a To Do list again. Last time I tried, I realized after a week I was pressuring myself to accomplish everything in one day. I then had to abandon the method in order to keep from driving myself into the ground. If I adhere to the rules on the info sheet that Bivins gave me for pacing myself (during our first appointment), I’m often able to get from Monday to Friday without feeling completely hollow by the weekend. But, if I fail to pay attention to what I’m doing, the whole of it falls apart and it takes me 2 or 3 days to recover physically, sometimes even longer emotionally. It’s been a struggle to learn not to discount simple chores. Some days getting out bed, into the shower, and dressed are my greatest accomplishments. Jon suggested a long time ago that I should keep track of the things I accomplish throughout the day instead of what I don’t get done. It’s invigorating, to complete a task — whether making beads for the relay team or picking up the clutter in the living room — and unfortunately, I do get overzealous. Lack of sleep only compounds the issue. I hurt more, I stare at walls more, and I have to bust my ass to stay focused long enough to have a telephone conversation that doesn’t include a lot of, “I’m sorry, what was that again?” Since Yana calls me the most, she’s the one who hears it often and she seems to be pretty savvy about picking up on the days when I’m not all-functioning.

Of all the people I know, she and Jon both seem to have the keenest sense of what’s going on inside of me even when I’m unable to say. I suspect Annie might, too, because she often asks me if I’m doing all right. She has her own experiences with combating utter exhaustion so it’s possible she’s more adept at reading the signs. Jon is good at picking up on the I need help cues even if they come disguised as “I’m sick of doing laundry.” I haven’t been feeding him well the last couple of weeks. Not that I feed him bad, but meals haven’t been very imaginative or fun. Life sustaining, yes. He’ll always get that. But, last night I threatened him with a cheese pizza and then we ate leftovers. Our stock of leftovers is depleted for the month, however, so it’s time for Zombie Breece to pack her bags and take a vacation. We need more frozen enchiladas, homemade refried beans, stir fry, etc.

Thinking about this next month makes me anxious and I know I need to be very mindful of myself. Mama Yana didn’t even need to bring it to my attention although she did. I don’t really have a strategy yet. I just know that I want to be on my feet and as healthy as I can be on my wedding day.

I can deal with most of my cold symptoms, but the ritual coughing fits that start right before bedtime and end around 4 a.m. have disturbed an already deranged Circadian rhythm. I’ve avoided taking Ambien in this state for fear that it will only tempt the glowing-eyed dragon visitations. Most Ambien-induced hallucinations I’ve experienced haven’t been too bad, likely because Ambien doesn’t seem to eradicate rational thought. Okokok, that’s really just the dvd player breathing fire and glowering at me. But, I’ve sat up long hours watching the walls or sofa melt, undulate, and breathe. Mostly I find the dragons emerge in the dark and from electronic components with glowing digits or knobs.

On the Fibro/CFS-side of me, if I could go to bed and make a career out of staring at blank walls, life would be complete. That’s the irritating part — that NOTHING seems to be the mode for today. Fuzzy vision, even wearing my reading glasses, bars me from reading a book; small print does all but vanish into the page. I look forward to the day when books come equipped with Ctrl +/- options.

At the moment, fear is my worst enemy; patience probably my greatest ally. I’m stuck, able only to articulate, “I feel like hell,” when it’s deeper, much deeper. I stand at the helm of a ship in ill-repair, which although it may conduct itself at my command, does so only with great concentration and effort. Everything is manual; no power steering, no power brakes, and the gears grind even though I’ve clutched.

I want to write and be creative, possibly work on a handmade journal or make embellishments from polymer clay, but it’s a strain to keep hold of a cohesive thought for long. Fatigue and the headache which resides at the base of my skull have drained the color around me. Movement is laborious, as though I’ve been suspended in ballistics gel. It seems I’m even further disconnected from reality than any heavy duty decongestant should be able to induce.

The muscles in my hands and forearms are stiff and sore, as if they’ve shrunk under my skin the way wet leather does when it has sat too long in the sun. My spine is the pike upon which some blood-thirsty barbarian has skewered my head. I loathe the “elevator sickness” that makes the ground unstable when I walk. Every step must be carefully calculated as I make my way down the stairs.

My shell, though, is cool as a cucumber. I may look a little tired, but I’m lightning fast in my turtle sort of way. I’ll move quietly most of the day, seeming little more than contemplative and possibly a little sad. Around prime-time, I’ll give up trying to be productive and plunk myself down on the sofa. For the length of a rerun of Without a Trace and an episode of Medium, I’ll let the TV curdle my brain.

If I’m lucky tonight, the coughing fit won’t come and I’ll be that much closer to the end of this cold. I’ll snuggle down with a sleepy Jon beside me and a tiger named Teddy wrapped around my neck to cradle my noggin. I will be thankful, too; stuffing tissue up my nostrils is no longer necessary.

My hope is that this concoction isn’t just snake oil and that my greatest benefit will be freedom from the Fog. The increasing amount of times I lose myself in public places is alarming. Forgetting faces, names … sometimes I can’t even recall why I’m upstairs when I was downstairs only a minute ago. I’m told Alzheimer’s disease only effects the elderly. I wonder.

Jon commented the other day that I’ve vastly improved from the day I arrived here almost 3 years ago. It seems crash and burn is inevitable if I want to be a productive member of society. I keep trying to take my philosophy from the Tortoise and the Hare, but how? How does it fit in today’s society?

I felt a bit frenetic while I was at Bivins’ office, as though I were running on empty. He paid me a kind compliment about the impeccable grammar/English in the letter I sent to him. He’s been very attentive about some of the points I’ve made, but I’m going to express my concerns about my diagnosis with him during my next visit, if I get the chance. I’ll try to be more open with how I feel.

As for my observations on the Myers’ Cocktail: when I left the office yesterday, I felt fine. As I sat in my truck trying to unwind (I was a bit frenzied), my vision got … watery. It didn’t last long, maybe 5 or 10 minutes, but as I sat there reading the signs around the parking lot and my speedometer, the lettering looked funky 3D and wouldn’t be still. I told Jon it seemed everything around me turned gaseous, like distant hills on a hot summer day. I felt more tilty than normal for the remainder of the day, but not so bad that I walked into walls (okay, maybe once or twice, but that’s not rare). My arm ached most of the evening. Right after bedtime Jon got one of the Comfort Cuddlers (highly recommended) from the freezer for me and I tucked it into the crook of my arm, over the injection site. That seemed to do the trick. He said I was asleep in less than three minutes — POOF. (Yay me!)

Today, mostly I feel the way I usually do after I’ve had a full day. My left arm/hand is a little stiff or swollen and I can’t make a solid (aka useful) fist. My jaw is stiff. I’m not super ambitious and ready to roll, but at least I haven’t yet passed into that silly phase where I can’t stay upright for more than 20 minutes. I have things I’d like to get done, but today is definitely one of those days when I need to pace carefully and to the letter: 2 hours activity and 20 minutes of rest. Period. No arguments. (mmhmm)

I was showing progress in getting to sleep at the same hour on a more regular basis, and I think it helped. It doesn’t take much to throw the whole schedule off, though. One night not being able to get to sleep and that’s it, the battle is on. If I had to wager a guess though, I’d have to say the Lyrica serves me much better than the Topamax did where sleep is concerned. I think the Topamax (for me, anyhow) is far superior in benefits. I believe I hurt more now than I did two weeks ago. Instead of simply falling prey to the pain, I’m making an effort to keep track of how I feel.

I sent the letter to Bivins. My guess is if he hasn’t seen it yet, he will come Monday. The knot in my stomach will probably hang around for a week or two before I forget that I sent it. I hope so, anyhow. I’d much rather forget than to keep dreading the drop of the clichéd other foot. What will be will be; let go and let God.

I’ve written my doctor a letter but find I’m terrified to send it. Nothing like a little openness to set myself up for more disappointment.

Dr. Bivins is changing my medication now. He’s weaning me off the Topamax and trying me on Lyrica. I like this because I think the Topamax is just too damned designer expensive. Jon is concerned, though, because he thinks the Topamax has had exceptional results in knocking out my pain. He observes that my energy levels have definitely improved, my moments of Fibrofog have decreased, and even my memory has improved. He’s worried I won’t get the same benefits from the Lyrica. Hopefully I will. If not, we can always go back to low doses of the Topamax, I think. Either way, I don’t think a 200 mg dose is doing any more for me than a 100 mg dose does. There’s no doubting the Topamax has helped me a lot, but I hadn’t made these other observations for myself that Jon made.

Sleep and stress are still my worst enemies. I guess in that sense, I’m still my own worst enemy. I’m not sure how to get myself to sleep. If I’m wired, I’m wired, and no amount of coaxing, cajoling, doping or meditating seems to unwire me long enough to get the rest I need. I do, however, believe sleep deprivation is the foundation for most of my emotional rollercoaster rides, hence the reason I don’t seem able to handle stress very well any more. If I can get a handle on my sleep, I think stress will follow suit.

The vacation from the computer hasn’t been all that bad, really. However, the work and ideas for the Caretaker Chronicles have exploded across my notebooks. Again — Yay me! I got a bit hung up on the whole world-building scene, but I have a bright idea which I will share once it’s in motion (which means it has to warm up enough so I can go outside without becoming stiff and cranky).

Classes start again in about umm … two weeks. I took Spanish Part Dos. I got a B in the last class and although the perfectionist in me grouses in the background, the newly educated Fibromite is quite pleased. I think I’ll cheat next semester and finish all my homework in the first weekend (you didn’t see me say that!). That should leave me more time to study. :P

All in all, this whole pacing concept is much better to the alternative, but I still don’t know how I can apply it to any work place that’s not of my own creation. I still crash and burn even when I strive to take baby steps and little bites. I do a lot and I get a lot done around the house, but it’s over the course of an entire day, not an eight-hour shift.

One of the problems I still have with pacing is that I don’t count certain activities. Take for instance, typing. It’s not a strenuous activity, how can it possibly wipe me out? Oh, yeah … showering wipes me out. So — pacing. Fifty minutes of activity and ten whole minutes of nothing. Stillness. Quiet. No reading, writing, or even thinking. I’m not always successful, but I’m getting better at it. It’s not a fix for the energy shortage, but it helps preserve what I do have when I have some to spare.

I’ve always been able to handle direct pressure, such as someone squeezing my hand. It hurt, but the squeezing also somehow countered the pain sensations I felt internally. I had next to no tolerance for more specific pressure, such as pressing a fingertip into the palm or [especially] the back of my hand. My hips were the same way, and when it came to the bottom of my feet, I’d almost literally unsheath my claws and tear someone’s head off, the pain was that unbearable.

As I said in an earlier post, Topamax, at lower doses, is [now, also] marketed as a migraine preventative, but it’s an antiepileptic medication used to control seizures – including grand mal seizures. But, the dose necessary for control of seizures, so far, is well above what Dr. Bivins is recommending I take. I have a bottle of 25 mg caplets. For week 1, I’m required to take 1 caplet at night, then 2 at night for the 2nd week, and the 3rd week I’ll take 3 for a total of 75 mg. So far that I can tell, the worst possible long term effect, outside of an assortment of strange side effects, is kidney stones (and, of course, liver damage) — so drinking a lot of water is important. As an antiseizure medication, doses seem to be well above 200 mgs a day, maybe even more. I’m basing all my research off the links I’ve left here.

Four days after I started Dr. Bivins’ recommended course of action, Jon was able to touch the back of my hand, and poke his fingertip into the palm of my hand. He can touch the bottom of my feet. He’s tried a few of his own “tests” and claims he can still feel hot spots. No doubt. I’m not cured, and no one reading my words here should think I’ve found the miracle cure or the messiah in Dr. Bivins. I haven’t.

What I’ve found — at least as far as I’m concerned — is honest to goodness progress in determining what Fibromyalgia really is and how to treat it properly. Eventually, maybe these will lead to understanding what causes Fibromyalgia, or answers to how to prevent and/or stop it altogether.

If your doctor is not looking at Fibromyalgia as possibly a neurological problem, kick him or her in the ass or start looking for a new doctor. Wikipedia has a pretty good article on Fibromyalgia. Read the whole thing, but pay special attention to the the section on Sleep Disturbance under Theories on the Cause of Fibromyalgia. This (or one very similar) is the theory Dr. Bivins adheres to, and currently, I’m willing to believe he’s on the right path.

Sidenote: I feel it necessary to add, though, that I consider the Guaifenesin protocol, also referenced in the Wikipedia article, to be nothing more than a glorified snake-oil remedy. However, do your own research — don’t take my or anyone else’s words at face value — seek the truth that works for you.