Feeling good on break!

Just a brief note to say that I have been taking a break from the MP for a few weeks, and very suddenly about two days ago started feeling better. Went almost overnight from being miserable, depressed, lethargic, and sleepy to feeling well enough to say, "pretty good, thanks!" when someone asks me how I'm doing! Haven't said that in a VERY long time. My brain is waking up, I'm able to focus, and I actually have some energy to do some chores and projects! It's amazing! I still have a lot of work to do on the Protocol (starting Year 4), but this break is giving me real perspective. Thank you, Dr. Marshall, for giving me my life back!

Advertising

"To Lord Peter Wimsey, the few weeks of his life spent in unravelling the Problem of the Iron Staircase possessed an odd dreamlike quality, noticeable at the time and still more insistent in retrospect. The very work that engaged him — or rather, the shadowy simulacrum of himself that signed itself on every morning in the name of Death Bredon — wafted him into a sphere of dim platonic archetypes, bearing a scarcely recognizable relationship to anything in the living world. Here those strange entities, the Thrifty Housewife, the Man of Discrimination, the Keen Buyer and the Good Judge, for ever young, for ever handsome, for ever virtuous, economical and inquisitive, moved to and fro upon their complicated orbits, comparing prices and values, making tests of purity, asking indiscreet questions about each other's ailments, household expenses, bed-springs, shaving cream, diet, laundry work and boots, perpetually spending to save and saving to spend, cutting out coupons and collecting cartons, surprising husbands with margarine and wives with patent washers and vacuum-cleaners, occupied from morning to night in washing, cooking, dusting, filing, saving their children from germs, their complexions from wind and weather, their teeth from decay and their stomachs from indigestion, and yet adding so many hours to the day by labour-saving appliances that they had always leisure for visiting the talkies, sprawling on the beach to picnic upon Potted Meats and Tinned Fruit, and (when adorned by So-and-so's Silks, Blank's Gloves, Dash's Footwear, Whatnot's Weatherproof Complexion Cream and Thingummy's Beautifying Shampoos), even attending Ranelagh, Cowes, the Grand Stand at Ascot, Monte Carlo and the Queen's Drawing-Rooms. Where, Bredon asked himself, did the money come from that was to be spent so variously and so lavishly? If this hell's-dance of spending and saving were to stop for a moment, what would happen? If all the advertising in the world were to shut down tomorrow, would people still go on buying more soap, eating more apples, giving their children more vitamins, roughage, milk, olive oil, scooters and laxatives, learning more languages by gramophone, hearing more virtuosos by radio, re-decorating their houses, refreshing themselves with more non-alcoholic thirst-quenchers, cooking more new, appetizing dishes, affording themselves that little extra touch which means so much? Or would the whole desperate whirligig show down, and the exhausted public relapse upon plain grub and elbow-grease? He did not know. Like all rich men, he had never before paid any attention to advertisements. He had never realized the enormous commercial importance of the comparatively poor. Not on the wealthy, who buy only what they want when they want it, was the vast superstructure of industry founded and built up, but on those who, aching for a luxury beyond their reach and for a leisure for ever denied them, could be bullied or wheedled into spending their few hardly won shillings on whatever might give them, if only for a moment, a leisured and luxurious illusion. Phantasmagoria — a city of dreadful day, of crude shapes and colours piled Babel-like in a heaven of harsh cobalt and rocking over a void of bankruptcy — ? Cloud Cuckoo-land, peopled by pitiful ghosts, from the Thrifty Housewife providing a Grand Family Meal for Fourpence with the aid of Dairyfields Butter Beans in Margarine, to the Typist capturing the affections of Prince Charming by a liberal use of Muggins's Magnolia Face Cream."

— Murder Must Advertise, by Dorothy L. Sayers, 1933

manic?

No wonder I don't know what day it is. I was up until 6am last night--I mean today. My mind is just racing. I feel sort of scattered but seem to be able to focus well and even finish tasks. Unfortunately, I am focused on entirely trivial things. It would probably be better if I could focus on something relatively important that I put off for weeks while I was feeling so bad. (I think I'll count "posting on my blog" in the relatively important column.)

I think I recognize this as a pattern from previous times when I have changed the Marshall Protocol meds according to the dosing schedule. When I reduce one of them significantly, it's like I wake up from a dream.

Only now I know: this is how I will feel when I'm well. Not that I have energy, exactly, but things don't seem overwhelming. It would be amazing to be able to count on feeling this way, on having a brain, for days or weeks at a time: I might even be able to do something crazy like start practicing law again. Is that what being well would be like?

I still have some brain fog. I'm having some pretty dreadful memory lapses and I'm still dropping nouns in speech. Numbers still baffle me. I'm still tired, and not rested. (And the insomnia of this phase won't help with that.) I still have joint and muscular pain. Lots of other symptoms I won't bore you with. But I'm having moments, hours even, of mental clarity. The comparison to how I felt less than a week ago is stark.

This is real. The Marshall Protocol is the cure.

onward

I was so brain-fogged the other day when I wrote the previous post that I didn't know what day it was. Not that it matters substantially in the greater scheme of things, but when I wrote "tomorrow," I should have written "today"--but I didn't know what day it was. The good news is that the change in dosage levels that day (Wednesday) has led to me feeling substantially better. All my symptoms have lessened and I've felt well enough today and yesterday to play the piano a little and also--here's the scary part--upload all kinds of crapola to Facebook.

This is more complicated than it sounds because it involved audio and video. Now, I have been a techno-nerd since 1982, and I build my own computers, but I have resisted joining the media blitz on the internet for years. I'm pretty much a luddite when it comes to multimedia, and don't even own an iPod. I hate noisy and blinky things in my web experience and so I use a browser that makes it really easy to turn all that multimedia garbage off by default. What this means however is that I am increasingly having to adjust the content blocker and the plugin stopper for individual websites like Facebook, and for some things I even have to switch to a more popular browser so that things will work, especially if multimedia is involved.

So yesterday I started with what I thought was a relatively simple task: figure out a way to get a certain recording off of a CD and onto my Facebook profile as an MP3. But, as always, things are never simple when Windoze is involved, and it gets worse when you throw in the nonsense called DRM [rant omitted]. I eventually accomplished the goal but it set me onto other ones: figure out a way to capture streaming video for later playback (for free); figure out a way to post other multimedia stuff to my Facebook profile. I spent most of the day today at cnet researching freeware (with a detour to the WayBack Machine at archive.org), discovering the fun at Hulu.com, and revisiting a karaoke site where I recorded a bunch of songs last summer for fun. I still haven't found the right software to capture that stream, but I did find an interface that enabled me to post my karaoke recordings to my Facebook profile.

Just in case you're wondering, I already know how to post my karaoke recordings to my blog. But don't worry, I'm not going to.

3/4 through Phase 2

Tomorrow I start the last level of Phase 2. Hopefully it will last only 40 days.

The past 40 days, as time has worn on, life has become increasingly like the CFS relapses I remember. It's not as bad as when I first got sick (that was like having mono for two years) but it is almost as bad as--to pick a couple of relapses at random--my first 2005 relapse (when I stopped working) and the second one that year (after Hurricane Rita). The main symptoms, besides fatigue, are a heaviness in my chest and limbs, some joint pain, some muscular pain, brain fog, and not really caring about much of anything. Sometimes, usually late at night and depending on the dosage schedule, I get this itchy feeling all over my body under my skin, which usually makes me anxious and restless for a little while. And for the past few days I've been seeing some edema, craving salty foods, and a bit grumpy. The latter could of course be plain, old-fashioned PMS--it's hard for me to judge. In the olden days I used to gain (and lose) as much as seven pounds every month--which at my height and weight is a full clothing size or more.

Although some of these symptoms are annoying, there's nothing truly dreadful. I think the most important thing right now in fact is to maintain an awareness of the symptoms, especially the neurological ones, because as the MP starts killing bugs in my brain it will probably become harder to see the forest for the trees and so keep my perspective.

The most significant thing is that despite the fact I'm "as sick as I was" instead of "feeling better," I know that with the Marshall Protocl, there is an endpoint. It may be years from now, but it will get here. After literally a full decade of blindly hoping that tomorrow, next week, next month, next year I would feel better and be able to live a normal life, it is so much easier now because I know that eventually I WILL be able to live a normal life. There is certainty, not just helpless wishing.

Trying to go out more

My niece's wedding last weekend was wonderful. I was so grateful to be able to go. Folks seemed to like my hat/scarf/gloves/glasses and I practiced my Royalty Wave. The wedding was a couple of hours' drive away and was outdoors at 7pm (sunset is at 8:30). I used the prescription cream on my face and took extra Benicar and the sun really wasn't as oppressive as it was during my outing earlier in the week (when I took the same precautions and was out for a shorter period)-- who knows why? I used a sunshade while in the car and after we got to the venue rested in a room with no windows. After the ceremony, I kept my paraphernalia on while near windows inside until it got dark.

I even managed to dance with the groom (to an Elvis song!) but I was too tired to join in the line dancing. My parents nearly won a dancing contest, for the couple married the longest! I had never seen them dance before as my father usually refuses to dance but to everyone's utter shock he took my mom to the floor and they were only defeated by a couple who had been married one year longer. They celebrated their 42nd wedding anniversary this week!

Since that big adventure I've been resting a lot, but I did go out the other night at dusk. I didn't use the cream/hat/gloves/scarf but I did take extra Benicar and wear the NoIR glasses. It went well but I have been really tired since.

And now, for something completely different:

I looked up the word "paraphernalia" to make sure I had spelled it correctly and learned that although its modern usage is generally personal equipment or accessories, the historical definition is "the separate real or personal property of a married woman that she can dispose of by will and sometimes according to common law during her life!" Wow, who knew? The etymology is from the Greek (via medieval Latin of course) and is "bride's property beyond her dowry, from para- + phernē dowry, from pherein to bear."

out during daylight

I actually went out this week. I went to get my hair done. My niece is getting married this weekend and so vanity required that I get it cut and colored.

The good news is, all the hormonal adjustments the MP has caused mean that my hair is healthier than it's been in years. It's thicker, smoother, stronger, and isn't falling out or breaking all the time. The bad news is, it's still coming in about half white (it started going gray when I was 27, shortly before I got sick). The good news is, my stylist got the color to exactly the color it was when I was a teenager! Happy, happy, joy, joy! Someday my natural color will be back. There was an 80 year old man on the MP whose hair had been white for decades and it suddenly started coming in dark. So there's hope.

I was out for about four hours and really found the sun oppressive. It didn't make me feel ill, but getting out of the sun was a relief. During the drive home (heading west) I put a scarf over the lower half of my face (along with hat, NoIR sunglasses, gloves, long sleeves, jeans, and boots) and the relief was palpable. When I got home I wanted nothing more than to retreat into my dark bedroom; I even shut the door which I don't usually bother to do. When I shut my eyes I saw flashing lights. Eek! Fortunately the flashing went away after twenty or thirty minutes, and I felt much better. Since then, just a little extra tired.

My niece is getting married on Saturday evening and I will probably be out during daylight for about six hours. It shouldn't be too bad as I'll be well prepared.

Halfway

I have no excuse for not writing for three months. Well, I have an excuse, but it's not a good one. I'm tired.

I passed the halfway mark in Phase 2 of the Marshall Protocol a couple of weeks ago. With any luck, my current schedule will allow me to start Phase 3 by about the time of the autumnal equinox. So that makes Phase 2 about six months, at least on the schedule I chose. I could have pushed through it a little faster, but slow and steady wins the race. And kills more bugs.

It's hard to write about the last few months. There's nothing dire or dreadful, but I've been feeling a little more like I did when I first became ill, or when I relapsed, than I did during Phase 1. I have no motivation to do anything constructive, even write whiny blog posts. I watch way too much TV, read books, and play games on Facebook. Every now and then I do something crazy like play the piano or dust. But my "to do" list hasn't gotten any shorter since my last blog post.

But lest this sounds morose, let me assure the world that the MP is working and I am not depressed. There have been some signficant physical changes recently and although I am as tired as ever I know that my immune system is coughing back to life and killing bugs. It's just going to take time.

I will try harder to post regularly.