Tag Archives: CFIDS

A day of peaceful marches succeeds

AMERICANS HAVE THE RIGHT TO PEACEFUL ASSEMBLY AND PROTEST

It’s guaranteed by our Constitution:

The First Amendment states that “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

Funny how many people don’t know that.

I spent a good part of the day on the computer, wishing I could be with the peaceable* men and women who marched, all over the States and the world, to remind the incoming president that his power is nowhere near absolute, and he is the servant of the people, not their master.

Friends of mine who posted pictures were in DC and Oakland and other marches, and one of my children was at the San Francisco march.

I am very proud of all the people who, in the face of frustration, marched with peaceful intent. They were marching even for the people who voted for the present administration, because those people will need healthcare and job rights, too.

They put their money where their mouths were: it took planning, organization, time, money, and effort to get that many people – literally millions – to the many march sites.

Crowds scare me – I avoid places I can’t get out of quickly

How much of that is me, and how much decades of chronic illness and no energy, is debatable, but I hope I would have made the effort, somewhere, if it were physically possible; I would have liked to march with friends.

It is not enough to be there in spirit. The Millions Missing protests this past year had people with CFS send in their shoes to represent themselves, and a pair of mine went. Symbols are important, but it is sad that my shoes could do something I cannot.

There have been marches by disabled people – but they are usually much smaller and require a lot of support.

My stamina is zilch: the marches were for reasonably healthy people who could travel, assemble, walk the distance, stand and listen – and then get home safely. These are the times when I miss that the most, when everyone else gets to go.

Most of the time I pretend I live in this room at my computer by choice; today that delusion was very hard, especially when my friends were posting selfies of themselves with the monuments on the Mall in the background. I got to go with them that way; I spent the day watching, reading, listening.

And sleeping. Thrilling it was not.

And glad I could stop worrying when the message came from San Francisco: Home safe.


*The previous version: If you want peace, prepare for war.


What’s better, working for justice or preparing for war?

Advertisements

Writers censorship by insiders still censorship

A page of roses. Text: Artistic integrity is for the writer to decide. The road to hell is paved... Alicia Butcher EhrhardtACTIVISTS TELL ARTISTS TO BE POLITICALLY CORRECT?

I received an email today from someone in my own community which reads:

Alicia,

Please, please, PLEASE change the name from CFS to ME.  I have just watched [X]’s TED talk, and that only reinforces how important it is not to continue using this dreadful name. We must NOT add to the wrongness of all that is wrong or not happening with this disease.

[X] might well be putting ME on the mainstream map. …

Thank you, [NW – name withheld]

And it raised my gorge, for reasons I will now explain.

A little background would set this in context

I started Pride’s Children at the turn of this century, set it a few years later into the time period 2005-2006, and locked it down in my memory to keep the details accurate.

It took me a long time to write, a long time to get it right, and a fair amount of time to publish.

Promotion is not my thing, but I’m womanfully shouldering the task, which used to be a purely indie/self-publishing task, but has now become a task most writers, traditionally- or self-published must undertake (or risk selling no books – traditional publishers only market those books expected to be big sellers or for writers in their top 1-2% – everyone else gets bupkis in promotion).

SINCE publication, a bit over a year now, among other efforts, I have asked a lot of CFS people to read, and possibly make a mention of Pride’s Children on their blogs or sites – and haven’t even had the courtesy of a reply.

I shrug – figure they have more important things to do with their time.

My own Facebook ME/CFS community has been far more supportive, and people there have made a huge effort to read (even when they rarely read books any more, and even more rarely something of PC’s length (167K words for the first volume in a trilogy) and complexity. And several have given me the incredible additional gift of a review – and I know how much it costs me/them.

I’ve asked other people connected to the ME/CFS community to publicize, read, review – again, no interest.

Fiction breaks down walls

I emphasize that fiction is one of the prime ways (cf. Uncle Tom’s Cabin, Black Beauty, To Kill a Mockingbird… in novels; movies such as The Philadelphia Story with Tom Hanks) there is to get through the barriers people put up against involvement around their hearts and minds.

I understand; the world used to have a disease of the week, and now it is more like the disease/charity/cause of the second on the internet, TV, and the mails. ‘Compassion fatigue’ is real.

I think I’ve written well; some readers tell me so.

And you’ve heard endlessly my statement that

the more there is a message in the fiction, the better the entertainment value must be

because people don’t like being preached to. Have an important message? Don’t tell people – let them find out for themselves through your characters.

So why did this email bother me so much that I’m blogging about it?

  1. Historical context: for a disease that has been called yuppie flu, CFIDS (chronic fatigue and immune dysfunction syndrome), SEID (recently – something to do with our post-exercise exhaustion), ME (for myalgic encephalomyelitis or encephalomyopathy), and others that didn’t stick very long, it is disingenuous to decide that ‘ME’ (with the first description- one I don’t understand because I always though myelitis was an inflammation the covering on the outside of nerve fibers (Google: infection or the inflammation of the white matter or gray matter of the spinal cord), and I don’t even remember what ‘myalgic’ means (Google: muscle pain). In any case, ME always has to be explained.
  2. Everyone’s CFS is different, though there is a core of symptoms (like a Chinese menu – so many from Column A, so many from Column B). I was diagnosed with CFS in 1989, and nobody did anything then or since to see whether there’s inflammation somewhere on my spinal cord (nor would I let them – the symptoms are bad enough).
  3. There is no approved designation worldwide – the European ME people say we US people with CFS don’t have the same disease, for example.
  4. There are no approved tests – up until now, and especially in 1989 and 2005, the diagnosis was made BY EXCLUSION of everything else they could think of that gave you the same symptoms. We’re hoping for research that will nail down a cause, and possibly give hope for treatment, at least for those who are more recent victims, or possibly not full of co-morbidities after all these years.
  5. Insurance companies and the CDC and the NIH change their designations all the time, for reasons which they always claim are ‘the best.’ I’ve seen a lot of these in 27 years, and few have stuck, and each one claims to be the one which will put us on the map (and wastes a lot of money on talk, administration, and stationary each time).

Another name change could come along tomorrow – and I hope it will when they figure out the cause – some exotic virus or virus fragment or new quasibiological entity – which will give the whole thing the correct context (cf. HIV). CFS is as good as any of these other designations – and has the advantage of being far better known (and not pronounced ‘me’ as in ‘I have me.’)

But of course the most important part is that I choose what I write

And was careful to make some of the above distinctions (ones which would be known in the time period the book was set in), before using CFS consistently in the rest of Pride’s Children, BECAUSE THAT’S WHAT WE USED BACK THEN.

And I guided the reader in and out of those distinctions with care and deliberateness to emphasize the (at that time and still now) UNKNOWN quality of this illness.

If you own a copy, it’s in Pride’s Children, Chapter 2, where Kary explains it to Dana. If you don’t own a copy, the Look Inside feature on the book’s Amazon page includes that chapter in the sample.

C’mon, wouldn’t it be an easy change, and shouldn’t I play ball?

In addition, the email sender shows a cluelessness about how a book is written, published in ebook and in print that tells me blithely to put in hours, days, weeks to change something – because X gave a TED talk.

Good for X (who belongs to one of the organizations I’ve gotten no response from – an organization within a few miles of me, by their address). This is X’s mission – along with more advocacy that I am very grateful for – and which I cannot do. X has put a life on hold (no choice in the matter because, well, of CFS. ME/CFS. ME.) and chosen to use connections I can’t do anything but drool over. I am happy for X.

And one of X’s project, which may make X famous (15 min.? hope not), had a very catchy and expressive name, which was JUST CHANGED to something entirely different I don’t like!

But I spent FIFTEEN years writing the first third (and outlining the rest) of what I consider a major novel with a CFS main character, before any of this other stuff happened (X has been sick for five years, and was in elementary school when I started this project).

I started serializing the final polished novel in 2012 – when X’s project was not even begun.

And there is no way in hell I’m going to make a change to my published story to accommodate anyone, just because they may end up being (probably will – those connections I mentioned – and a HUGE amount of effort) much more famous than I am.

I guess that covers it:

  • it was inappropriate to ask me to change MY book
  • it couldn’t be done, even if I wanted to, without an enormous effort on my sole part
  • and where were you, NW (name withheld) when I asked – I couldn’t even get you to read
  • I don’t think, personally, that CFS is all that dreadful a name; the name recognition, you see

It isn’t ignorance; the person (NW) who wrote has known me and my book’s existence for FAR longer than those five years I mentioned.

Thanks for listening. It is good to get these things written down – and out of my mind, where they tend to fester.

I will happily listen to opinions civilly offered.

Hope in NIH research budget commitments for ME/CFS?

cross-start-line

OCCUPY M.E. FOLLOWS NIH RESEARCH ON CFS

This is a CFS blog as well as my writing blog. There are much better CFS bloggers, so I don’t do much with it here, but I read and follow developments, as we all wait for some kind of answer.

Jennie Spotila does a lot of things, and in particular, runs a blog called Occupy M.E., where she analyzes what the information actually says.

She’s been running a features for almost a year now, called ‘The NIH RFA Ticker.’ With it she examines every week how the NIH allocates research grant money. In her words in the initial post:

“RFA” stands for Request for Applications, and it is an announcement from NIH saying, basically, we will fund $X amount of research on Y topic. This is different from regular funding opportunities, because the money has been set aside. If enough meritorious grants are received, that money WILL be awarded. That’s different from tossing your application into the general pool and hoping it floats.

NIH last issued an RFA for CFS research in 2006, and we’ve been begging for another ever since.

The weekly update post

Every week she sees how much money has been allocate by RFA by the NIH, and every week since she started, the RFA money for ME/CFS research has been ZERO.

From the Nov. 7, 2016 post, the totals for fiscal year 2016 were:

352 RFAs issued, $2,840,680,617 committed to RFAs, and ZERO RFA money for ME/CFS. Yup. That’s over 2.8 BILLION dollars in your tax money and mine.

The latest update (Nov. 14, 2016) showed how much money is committed so far in FY 2017:

51 RFAs issued, $252,167,563 committed to RFAs, and ZERO RFA money for ME/CFS.

We’ve been promised research, and attention, and money for about thirty years now. MOre recently, with activists holding protests, the promises have been made that they’re going to figure out what’s wrong with us.

Jennie just posts, every week, that actions speak louder than words, and, so far, the actions tell us we don’t count, and there is no one interested in studying us (they have to apply for those research grants), and we should stop bothering them because they’re trying.

I dunno. Jennie posts the numbers. I am giving them a tiny bit more visibility here. I visit Occupy M.E. for the weekly update. She is very polite – these are public numbers. She is much more polite than I am.

And every week I’m outraged.

I don’t know where she finds the energy. I can only shudder at how disabled people with unappealing disease and conditions will be treated these next few years.

You might click through and leave her some encouragement; it has been a lonely haul for so long, it would be nice to see that number, that ZERO, actually change. Even then, it will be a beginning, not an answer, to fund research. But to start a marathon, you have to cross the line.

Application to fiction

After all, this is my writing blog, too.

When I started Pride’s Children, and gave Kary this disease as something to deal with, I was afraid that the disease conundrum would be solved – and the story rendered moot – before I finished it. It would still be a story worth telling, set as it is in 2005, but the edge, the urgency, would be lost if the reader knew that CFS, like, say, AIDS, had been solved. Historic, but not critical.

I needn’t have worried. It may take me years to finish the remaining two books in the trilogy – but we don’t even have a start in this one important area of funding. NIH funding. Government research money spent for the needs of citizens who would love to be productive again, and would settle for not feeling quite as sick. I’ll probably win this race.

Pray for us. But also be outraged with us.

Comments make for happiness and the feeling of being heard.

A day of protest for the #MILLIONSMISSING from ME/CFS: May 25th, 2016

(not my shoes*)

(these are from Wikipedia)

I AM ONE OF THE #MILLIONSMISSING

I am being represented in Washington by a pair of my shoes.

Black high heels I used to wear to work, and when giving physics presentations such as the one I gave in the week of November 5, 1989, at the American Physical Society Annual Meeting of the Division of Plasma Physics in Anaheim, California.

I came back from that meeting with a raging fever; my doctor had antibiotics waiting for me, but I never got well again.

I was diagnosed with Chronic Fatigue Syndrome by an infectious diseases specialist. I was lucky; in those days getting a diagnosis was hit or miss, and the stories of people misdiagnosed for years were rampant even then.

Lucky – in the sense of knowing what was wrong. But the specialist and I looked at each other; he knew he was conferring a walking death sentence. I knew, even back then, that nothing would ever be the same.

It hasn’t been.

Research money allotted by Congress was diverted, many if not most doctors still don’t believe it’s real, and they still tell you it’s all in your head, to buck up and get some exercise, and stop goldbricking. The ones that acknowledge its existence have nothing to offer as a cure; treatments are palliative; and nothing lets you go back to what you were.

May they rot in whatever level of hell is appropriate.

It really shouldn’t be my job to figure out my illness, should it?

Back to Washington – and Seattle, and Melbourne, and…

Someone with far more energy than me – or their friends and families – has organized a Stand In. With the rubric #MILLIONSMISSING, they asked us to send a pair of our shoes, and a single choice of what we are missing the most in our lives.

I wrote: ‘I miss research physics.’

Someone from #MEAction will take these pairs of shoes (*I don’t have a picture of mine – that would have been too organized, and I had to work very hard to get my pair mailed as it was), and make a display so that the media and legislators have some idea.

There are millions of us worldwide – and somehow we have been left to cope with a huge public health disaster which robs society of the work we would have done – by ourselves.

At least, that’s how it’s felt to me. There are no specialists in New Jersey. There are a few in the nation, and many quacks, and many non-specialists doing the best they can dealing with symptoms. Some elaborate protocols that supposedly help – but require many months of elaborate regimens of supplements that I can’t even think of following; those are often used, at their own expense, by people so sick they have to do something.

But with no diagnostic criterion and approved treatment, insurance companies are reluctant to pay what should be their part – and very sick patients have to wrestle with getting both care and payment.

Not that there is a standard of care.

It’s getting more common to know someone with CFS

Or ME as some call it, or CFIDS, or the laughable SEID, or Yuppie flu, or chronic mono, or… The ‘experts’ spend much time arguing about these details.

Me, I think it’s going to turn out to be a post-viral thingy: you get something, it wreaks destruction, the virus may or may not stay around, but your cells no longer manufacture energy from your food.

I imagine a whole bunch of other complicated syndromes with some of the same symptoms, from Gulf War Syndrome to chronic Lyme, may benefit when researchers finally figure out how this works.

Meanwhile, those of us who have these things wish we’d had Ebola. Or HIV. Or TB. Or leprosy. Or anything that used to be a death sentence and is now managed, in many cases, by modern medicine.

Have a happy day – and give us a passing thought. And a prayer.

And understand we are not lazy, and are certainly not getting anything out of this.

And all we want is our lives back, so that we can go back to contributing to society the way we were doing when hit by the random freakish act of Nature.

There are an awful lot of us. Millions. And we are missing. From our lives – and from yours.


What can you do? Be aware. There are foundations of patients supporting research, and activists, and support groups if you want to contribute with your volunteer activity or financially. I belong to the New Jersey CFS Association. I can’t tell you which is most effective, but MEAction organized this event.


Just for today, I will remind you that Kary Ashe, the heroine of Pride’s Children, has CFS – and copes as well as she can, while trying to contribute SOMETHING to the world. Symptoms vary all over the map in severity; she is one of the possibilities, in many ways typical.

ME/CFS: Writer’s personal and professional inextricably entangled

missing.millionsTODAY IS MAY 12TH, INTERNATIONAL ME/CFS AWARENESS DAY

I had hoped, by this year, to have made more of a splash with a novel which has a main character who deals with CFS – and some of the complications, from exhaustion, to limited exercise capability (and especially very limited ability to INCREASE exercise over time), to pain, to brain fog.

It is difficult to write a character who is sick without triggering the pity response in readers – and then immediately checking out with “Who wants to read about that?”

It is difficult to write a character without making her seem inspirational for dealing with a major illness – this is called Inspiration Porn by disabled people who rightly don’t appreciate being called inspirational because they can get out of bed in the morning and try to make the best life they can of what Life has handed them.

And yet saying that giving a character CFS (or the old standby from the Romantic days, tuberculosis – otherwise known as consumption) is the same as giving them green eyes, just another character feature, is completely wrong. Though green eyes may dictate a character’s choice of lipstick or jewelry or clothing color, a major CHRONIC disease is a huge commitment for a writer, since it affects everything in the story. EVERYTHING. From the subject choice to the characters to how the writer (me) has to set up scenes and plot.

I write between the Scylla of ‘ick’ and the Charybdis of ‘does she still have that?’ Going too far in either direction immediately loses a portion of the audience, prospective or actual.

Today is International ME/CFS Awareness Day

And this post is about that, and it’s about me, and it’s about the story I chose to write, TOO.

I can’t help that. I have always said that I write from the fullness or paucity of who I am.

I don’t know how other writers do otherwise; I’m sure they find ways to tuck part of themselves and their life’s experience even into Sauron.

What it’s like, for me

I try to ignore it as much as possible, and yet a lot of my time is spent making sure I don’t do any of the things I know will bring that day’s writing to a complete non-starter. Such as eating too many carbs, not getting enough sleep, ignoring the start time for the next nap.

I spend a lot of time staring at the wall, able to surf the web gently, but not even capable of writing a blog post (and you can tell from the results how little thought goes into some of them!).

You don’t even want to hear the scads of coping methods – what’s the point?

My one determination is to let CFS destroy as little of my remaining life as possible; I’m partially successful at that. The rest of the time I’m fooling myself.

And I am depending on the kindness of family – who ignore my inability to be a normal participant in family life, to pull my weight, to not need things more than my ‘fair share.’

Even with an absolute minimum of what we can reasonably hold me responsible for, I get further behind every day. And any day that has ‘special stuff,’ such as today (which ALSO has me having to deal with insurance by phone – or risk not having pain relief because the company switched to a generic WHICH DOESN’T WORK) takes what little good time I have and pours it out like water on hot sand.

I don’t say this for any other reason than to stand witness on this day.

May 12, 2016.

Another year gone by with no real progress.

My 27th.

Verisimilitude – the appearance of Life

Considering what many of us PWCs (People with CFS) go through, the fact that I can sometimes write, and have actually worked my way through publishing a novel, is just short of miraculous – and I’m rather proud of the results.

In case you were wondering, things WERE better when I was Kary’s age; the mobility problems which bedevil my life came later, and might have been avoided (I won’t go into surgeons and knives – what’s the point? Hehe) had I known a LOT more, and had I not been the beneficiary of ‘old lady medicine’ (the kind of treatment which assumes that after a certain age, you aren’t worth saving).

Kary is NOT me, except in the small details and the normal amount of characterization that writers use: details such as outlook on life, a background we either have or research, a house in a place I’ve visited, a life in a place I know well enough to portray realistically for the purposes of the story.

Kary’s story is not mine: other than sharing a disease and some vacation landscaping and a proximity to Princeton, my life is routine – I have been happily married for 41 years now (Happy Anniversary again, dear husband), have never lost what she loses, have not had the experience of having big publishing pick up a historical novel that happens to go best-seller, have a different professional and personal background, don’t have the capacity to get through Anatomy…

Maybe we share having been affected by a particular set of books – but we grew up in different countries, so there can’t be that much overlap.

Wandering minds and brain fog

I’ll stop here, and list a few links to places doing a far better job of staying focused on real-life ME/CFS.

Me, I keep shying away from letting it have any more of me than I absolutely have to cede.

Links for ME/CFS International Awareness Day and CFS in general

  1. ME/CFS Action is doing a protest in Washington on May 25th (the day they could get a permit?). I have sent a pair of shoes which will represent me – if it isn’t obvious by now that there’s no way I could go there, park, walk, protest, …, you haven’t been reading this post or the blog.
  2. Some background on Jennie Spotila’s blog about the highly controversial PACE trials in Britain which in 2011 claimed to prove that all we need is behavior therapy to stop seeing ourselves as sick, and exercise therapy to get better. The British health system would love nothing better than to state there is already a ‘proven’ therapy which costs them very little, and that patients with ME/CFS are lazy – and sweep the whole thing under the proverbial carpet. BTW, when you want one-payer health systems, one of the things you get is a single-therapy for everything approach – and entrenched cost-cutting measures because of rationing.’ Look well, oh wolves,’ before you sign on. Budgets are ALWAYS getting cut.
  3. If you want to find out how many ‘solutions’ have been proposed, spend some time at Cort Johnson’s Health Rising blog – and you will be immediately depressed at the enormous number of unproven methods and supplements and ideas that have been put forth over the years, none of which have fixed much.
  4. Last one for today is also Jennie Spotila’s: she keeps track of one of the indicators of how our National Institutes for Health spend research money. When researchers, and administrators at government agencies, don’t believe something is real, they have no guilt about diverting money to their pet projects (some diseases have WONDERFUL PR – PR agencies and lobbyists riding the gravy train completely out of proportion to the number of people affected and the severity of the illness). And every week she points to one of the indicators of research money AGAIN being zero for a major disease.

I don’t mean to disparage all the researchers who ARE doing good things – without them we wouldn’t have ANY awareness to celebrate/memorialize/trumpet today. Some of them have been downright heroic.

I do mean to warn about the abundant quackery that rises up when the diagnosis isn’t known and there is no treatment that works for a ‘condition.’ People need hope, even when it dumps them with nothing, and money, time, and effort spent.

Depress you enough yet?

Not my intent. ‘Awareness’ is all we’re going for here today – readers here are no more responsible for fixing things than I am; if anything I am more (except that I can’t – but for the fiction).

I believe mightily in the power of fiction to change hearts and minds.

And a final plea: if you haven’t, consider reading Pride’s Children. And giving it to people or recommending if you like it. And writing a review.


MY GRATITUDE TO STENCIL for the ability to make images with quotes. If you use a lot, try them out.

 

 

 

 

 

2015 update on megadoses of vitamin B1, CFS, and writing

MEDICAL RESEARCH STILL HASN’T ‘SOLVED’ CHRONIC FATIGUE SYNDROME

Whatever they call it, CFS, ME, ME/CFS, CFIDS, SEID… they still have no answers I can believe. I can’t go to a doctor in my state (NJ), get tests which determine what I have and how severe it is, get a prescription for medicine which helps my symptoms (brain fog, pain, post-exertional collapse, swollen lymph glands, and perpetual exhaustion, among other things), and have a doctor titrate the right doses so I get better.

Or, heavens, get cured.

Grasping at the available straws

Vitamin B1 in megadoses (plus Celebrex, a cox-2 inhibitor used mostly by arthritis patients – which helps with pain) is the ONLY thing that has helped of the many things I’ve tried in 25, almost 26 years of having the disease half of all doctors (including my primary) still believe either doesn’t exist or is all in my head.

I’ve gotten used to that state of being – I can’t change it myself – and I refuse to let it take the rest of my life away from me.

For all the posts I’ve written about this over the last couple of years, type ‘B1’ into my search box. There you will find out where I got this idea, why it seems relatively safe, and how I’ve experimented with it.

How much is a megadose – and what do I actually take now?

I’ve been meaning to update the B1 information for a while, because the B1 posts (type B1 into the search box) are some of my most popular, but I was hoping to have a better report.

I tried a couple of things which I will discuss after reviewing my ‘protocol,’ but they didn’t work for me, so I have little new to report – except that I tried them and what they were.

I AM TRYING TO FINISH A BOOK – PRIDE’s CHILDREN, Book 1 is almost ready to publish – and moving slowly and relentlessly in that direction, but that’s why there haven’t been many blog posts.

And, curiously, I don’t seem to have much to blog about, except when, in the process of getting Pride’s Children, Book 1, ready to go up on Amazon, I run into a wall, and have to figure out how to get through it. AND haven’t seen anyone else solve that particular problem for me in a way I can use.

I seem not to think in blog-size chunks when buried in the minutiae of chasing plot holes and typos.

But I’ve wanted to do this update since I did the failed experiments.

Anyhoo…

Vitamin B1 Protocol I use (self-invented):

I set out five ‘doses’ of B1 every morning.

A dose consists of 500 mg. of Solgar Super Potency Vitamin B1 plus a 160 mg. capsule of Piping Rock Benfotiamine (fat-soluble B1).

Why the change in benfotiamine? Because my original pills, which came from Source Naturals, had a bad batch, and the pills (150 mg.) would crumble when I set out my five doses for the day, something which hadn’t happened before.

We went around with the company who sold them to me, and they replaced them with another set of bottles – from the same batch, and with the same problem – so that was that. I can’t be without it (I think – I haven’t tried), and I can’t in clear conscience take pills that crumble into dust.

EVEN though the capsules may have the exact same dust – they were MEANT to be capsules.

I have that as a reason – your mileage may vary. For the year and a half before that, the Source Naturals were fine – and they probably will be again. I may try them again, but right now I need at least the illusion of consistency – I’m trying to finish a book!

So how do I take my doses? Note change:

On the basis of learning that the B1 is supposed to be a co-enzyme for the metabolism of carbohydrate (of which I eat as little as possible), I take one ‘dose’ with each meal or snack.

That’s it – simple.

I often find, at the end of the day, that I’ve omitted one or two doses – the brain forgot. I don’t notice enough of a difference to know it there is one – but then the thing that does the noticing is the same brain that doesn’t work.

The REST of the Protocol:

I’m taking 3-5 naps a day. Again.(See below on what I tried to get around that.)

Some of those naps I spend doing breathing and gentle exercises, stretches, and isometrics. Other times I crash into a deep sleep. It depends on many things, including whether I got a good night’s sleep, and whether I’ve been fighting to put the nap off as long as possible. The brain fog doesn’t help.

My naps are 35 min. with a timer. Except that sometimes I go a lot longer. I let myself sleep if I need it – nighttime sleep is erratic, but doesn’t seem to depend on how many naps I take, or how long they are. So I just listen to my body if I can.

Failed experiment #1: STIMULANTS

Long story, but I was getting useful effects from taking half a Bronkaid tablet (ephedrine as a bronco-dilator, OTC). I would take only a nap or two, and even thought my peak brain efficiency didn’t seem appreciably higher, I seemed to be in my best state for longer every day.

That was good – and I loved it, and I used the extra good time to make writing progress a bit faster.

The bad part was that 1) my blood pressure started rising, and 2) the muscle pains got horrific – razor blades embedded in my flesh.

After some internet searching, I found that the first effect was not uncommon in older people like me.

And the other one ditto – except that some people suggested drinking more water, and I tried that – but ultimately it didn’t work.

Horrific pain was the killer – I stopped taking the Bronkaid that way (off label – do not use unless you are prepared to accept the consequences, or don’t get them). I could NOT get rid of the pain, and spent a lot of time doing stretches, yoga, etc., and was taking way to many extra pain pills.

But it DID work, and I miss its effect. It was nice to be a bit more coherent, take fewer naps, and get more done.

Failed experiment #1: MANGANESE

Portkelly, who commented on one of my early B1 posts, mentioned that he takes 10 mg. of manganese with the B1 – I think every time.

THIS IS WAY TOO MUCH FOR ME.

APPARENTLY, if your system doesn’t process the manganese (source: the internet), and if you are older this cn happen, it ACCUMULATES – and again raises your blood pressure.

This getting old is not for sissies – when I tried adding the manganese, just 10 mg. a day (not a dose), MY blood pressure started rising.

As soon as I noticed it, I cut out the Mn – BP dropped in a week or so to normal.

So now I add ONE 10 mg. capsule to my pills ONCE a WEEK, so I have a small amount available (think I), but don’t have the BP effect.

NO RECOMMENDATIONS TO ADD TO THE B1

I am NOT recommending either of these experiments. I am reporting on them.

I realize I am in the older demographic – and probably have compromised everything, and so get the side effects.

But I cannot, in due conscience, recommend anything I’m not using, and that actually caused me problems.

Maybe somebody younger will be luckier.

Will I keep taking B1? YES – daily

The B1 has not had any side effects, and I still think it give me that remaining one daily period in midday where I can actually think and write.

When I’m finished with this book, I may try again to see if the effect goes away if I stop taking the B1 ‘doses’ up to 5 times a day, but right now it’s in the category of superstitious behavior needed to get me through to publication, and I’ve done al the experimenting I’m going to do for the foreseeable future – I can’t afford the side effects of my failed experiments.

So, yes, I’m taking it.

Is it working for me?

In general, comparing to before, I think it helps 15-20% part of the time.

But I also realize I’m a more mature writer, and have made the effort to be professional about it, getting to that chair every day to write.

I may be fooling myself, but it’s not as if anyone has come up with anything else that I can be sure works.

Be careful with all this stuff – pray for SOMEONE to figure this disease out. If we had medicines that worked for pain, brain fog, post-exertional collapse, swollen lymph glands, exhaustion – and all the rest of our symptoms – we wouldn’t be looking for anecdotes.

Feel free to comment – but I have no additional information, no expertise, and no medical training.

What would I do if I got well? Guest post by Gay Lyon

GAY LYON – ANSWERING A CFS SURVEY HAS A COST

This week I once again answered one of those surveys asking “What would you do if tomorrow you were well?” I did it because I know it helps put a human face on this disease. In a positive way, it shows policy-makers that we’re just ordinary people, and it lets them know that ME/CFS prevents us from doing things that healthy people take for granted. It’s designed to tug at their heartstrings, much the way the poster child did for polio.

But I find that answering that question takes a toll on me. It leaves me sad.

In the years I’ve been sick, I’ve learned not to dwell too much on the past, or to think too much about the future. I find it easier to maintain a positive outlook when I take each day as it arrives.

To ask “What would you do if tomorrow you were well?” is really rather cruel. It asks us to revisit the life we imagined we’d have, the life that this disease prevents. It reminds us of the dreams and plans we had, which we’ve had to abandon.

I feel the same deep sadness sometimes when I get a chance to visit my former life for a time. If I’m having a good day and manage to do something I used to enjoy, I find that the pleasure I have in doing it is mixed with sadness. Even something like watching travel programs or cooking shows or home improvement shows, which I used to enjoy, aren’t really enjoyable when I know I can’t actually do those things. Or visiting with an old friend, remembering the things we used to do together and the things we planned, which they now do without me.

I’m generally a cheerful person. And I work at staying that way. I find things to enjoy in my life as it is, here and now, even if they’re small things, like the way the light shines through the leaves, or how my cat bosses me around. I like to think that what my life lacks in breadth, I make up for by noticing details that give it depth.

But every time I’m asked to think about “What if…”, what if things were different, what if I were well, it makes me focus on what’s lacking, instead of what I have. And it leaves me sad for a few days, until I can forget about those dreams and expectations I had, and get back to cultivating gratitude for all that I have.

I’ll probably continue to answer the question when I think it will do some good. But I wonder if the people asking the question know the cost of answer it.

Or maybe it’s just me.

—————————————————

Thanks, Gay. I don’t think it’s just you.

Early morning writing: becoming ME again

STANDARD WRITING PROBLEM: GETTING STARTED, BUTT-IN-CHAIR (BIC)

I have been battling early morning starts.

I got to the computer chair, but I wasn’t making the decision to block the net for several hours and get my writing done, even though that’s what I always want to do, and it’s the only time I can (before the world crashes in and demands things).

So I stopped to have a think – usually a good idea.

DATA: What is actually going on?

And I found that the first thing I was demanding of my bleary-eyed self was a huge decision: blocking out all my writing time, and getting to work.

And I couldn’t make that important a decision – yet. So I’d surf for a while, check the emails, searching for something ‘out there’ that would get me started, all the while dumping the vast garbage dump that is the internet (even when you confine yourself to a few well-known blogs) into my brain for composting.

Don’t even ask me to do yoga or go for a walk – the decision-making engine isn’t on yet, and I wake up stiff as a board.

It occurred to me I was going about it wrong: what if the answer wasn’t ‘out there,’ the trigger, the jump start, the on switch? What if reading and commenting and bookmarking – just because my brain wasn’t up to full speed – was actually physically counterproductive.

One of the most difficult jobs we do is to mine for gold nuggets from the tons of ore – because it takes brain power to mine, and the brain ends up loaded with stuff which must be cleaned out before it can think.

Copying my writing process: who am I?

I do that when I switch pov on my characters: I take some time to ‘become the character again.’ I re-read the character’s last scene, and the end of the previous scene (if the previous scene was a different character). I take the time, think it through.

What if the first thing I have to do every morning, as in every scene, is to become ME again?

Instead of looking at the early morning planning time as: check the to do list, pick the important stuff, load the brain up, whip it into action, hurry, time is running out – what if I see it as (though it doesn’t feel this way – maybe from years of assault?) time to remember who I think I am, and to let a positive attitude (preceded by smile and prayer) to creep into my brain BEFORE I subject it to the long list of things I WOULD do today (most of which won’t get done)?

Am I reinforcing my own brain fog?

What I really want: to write

I am a writer. That is a constant PLEASURE.

Regardless of how my writing time is spent, in principle I allow myself some each day – because that’s what I’d do if I had no pressures on me.

Writing is ME.

Writing is pure JOY – and I do it playing in my own mind, with only myself for company.

Wow.

I don’t need those people I keep looking for on the internet, in my family, in emails which sometimes come but most often do not.

My best play time is spent alone, unless I’m too tired to enjoy it.

Writing is how I communicate with my soul, though I will confess: NOT all of what I think will ever get written. Someone may later read my words and be hurt. I can’t keep frustration – we all have it – completely out, but I try not to do it deliberately, and certainly don’t want people to be hurt by what I really think – which I do only part of the time, anyway. We ALL have relationships with other people which VARY by the minute. Relationships are the sum of what we feel and think PLUS what we let out, conscious that we are not perfect ourselves.

Now that I know what I WANT, what do I DO?

Behavior – which includes speech – IS in our control.

Even thoughts – indulge the thought or work to replace it with a more loving Christian one?

Think of a pink elephant in the room.

Now imagine painting nice blue spots on it with a big brush.

Controlling your thoughts isn’t that hard.

And not having to deal with the huge playground/temptation/bottomless pit that is the internet before I’m even human seems to help. A breather. For my soul.

Update after a week: It is working!

I block the internet for a half hour only, and use that time to just sit at the computer, wake up, start the day by becoming ME again.

I’m starting the day with a brain just a physically muddled – that has to do with the disease, and there doesn’t seem to be a way of modifying it (yet): not caffeine, not breakfast or skipping breakfast, not sleeping little or a lot.

But, the same way I become a character before I write from that pov, I’m becoming myself before I have to face the world with it.

After the half hour, I take a superquick (less than 10 minutes, with the timer on) look through the emails and ask myself if things can wait. 99% of the time they can – and it seems so much easier to re-block the net for a bunch of hours and get to work than it had been.

Lesson: keep watching yourself.

Somewhere in your own data may be the answers to your questions. You know yourself better than anyone.

Does any of this resonate with your process for getting started – and around you wasting your own time? Or is it just me?

Careful proofreading is painful – but doable

WHAT DO PUBLISHED AUTHORS WANT?

I want to:

1) have no typos in my published work, and

2) avoid pain.

These aims are incompatible.

Proofreading your own work: a professional promise

I just proofread an important letter I am writing to a corporation for a subject of public advocacy that is apparently something only I can do (if it fails, you will hear about it).

Two pages.

I’ve been writing it for two years.

A very nice German fellow who discovered something similar and wrote blog posts about it, requiring a major worldwide corporation to mend its ways, was kind enough to help me, and worked with me on the letter. A year ago. Yes, I’m that slow.

Needless to say, with that many iterations between two people, in English but with a German correspondent (whose English is far superior to my almost non-existent German) on one end, the document had a lot of tiny gotchas where things had been moved around, edited, deleted…

I almost rewrote from scratch – but would have lost many of the nuances we’d built in. No go.

Add in brain fog. It took a long while.

The mechanics of proofing, newbie version

So I threw it up, latest version, on the screen.

And I started into it with all the tools of the proofreader:

I changed the font – edited, took a screenshot after making the corrections [s].

I changed the font size [s].

I changed to italics – found out the new font didn’t have italics – lost all my formatting. So I replaced with a different font, and located the things which needed to be bolded for emphasis again [s].

I turned on Speech in Scrivener, and went bonkers trying to turn it off when it brought the first error into my ken. Speech is at the bottom of the edit menu, and has no keyboard shortcut.

I went into the preferences, edited the formatting bar to include the Speech icon.

I selected paragraphs one at a time – then Speech only reads the selected text. Whew. Much better [s].

NOTE: hearing your text read to you, even by the pretty-good speech facility, is excruciatingly painful.

I printed it on paper – oddly enough, that didn’t work for me, no more typos found – or maybe I should have started there.

It hurts – the pain is probably good for your character

I couldn’t face the job. Procrastination, according to Alan Lakein (How to get control of your time and your life) occurs for two reasons: the task is Overwhelming. Or the task is Unpleasant.

This was both. I’m only doing it because it is my duty as a citizen, and said corporation could squash me like a bug merely by waving an attorney or two at me.

I hope they don’t.

The results of proofing are worth the effort.

I did the job. Two letter pages, closely argued. Trying to sound intelligent and committed and with further resources to sic on them if they give me trouble (y’all will help, right?)

The letter is in the outgoing mailbox (snail mail).

My stomach still hurts.

Celebrate! Always celebrate victories, however small!

I celebrated with mozzarella sticks for lunch.

I cannot imagine proofreading a 150K word novel this way.

And that’s next week’s task. Ouch. Even with lots of promised help (thanks, Lily).

Proofing tips that have worked for you but are not on the regular lists? Favorite tips for proofreading? Thanks!

Thanks to Quozio.com for the quote software with the pretty text and pictures.

Early morning fear: write through process

WHAT IF THE WRITING BRAIN NEVER TURNS ON AGAIN?

I fear, every morning, that today will be the day when the brain DOESN’T clear.

There are days like that, but I most fear the day when IT stops happening forever.

With an illness like CFS (or whatever the heck they’re calling it this week, other than CURED), you never know what the progression will be, whether when you come back – if you come back – it will be on a lower level of functionality, enough, maybe for brushing your own hair, but not enough for intellectual work.

And, trust me, writing is intellectual WORK. What goes on the page is the product of research, reading, studying craft, and creative thinking. I don’t seem to have the angst much any more (except to worry that I’m producing melodramatic trivia), and I know that the only way is through writing the next piece, IF there is a way through.

Trust the writing process

I do the things I do every day: I take my few meds that sometimes work, I get the can of caffeine dripping into the veins, I sit in the chair (butt-in-chair has its own acronym all writers know: BIC), I turn the computer on.

I am ready, but is the brain ready?

The brain fog is thick, murky, viscous.

I wait agonizing minutes. An hour. Another half hour.

I play games of Sudoku, gauging my mental speed. Nope, not there yet.

I can’t make decisions. How then could I possibly write?

Finally, something clicks. The magic number is 7. If the hard Sudoku is done in less than 7 minutes, the brain is ON! I feel the click. I don’t really have to spend 7 more minutes to test it – I can feel the synapses firing faster AS I do the puzzle, locating the numbers and the patterns and filling in the boxes, seeing connections, REMEMBERING where that 4 will go.

I CAN MAKE DECISIONS!

That is what I’m waiting for: the human capacity to make a decision. To pick one word and not another. To see a pattern and sequence in the story I’m trying to tell: this goes first, that goes later, and this is how she would say it.

The fear is allayed for another day. Maybe. This is just the BEGINNING of writing, that feeling that I can.

I still have to DO it. The most important decision, the first one, is to block the internet.

Am I procrastinating?

No. I’m sitting here. I want to write. I know what comes next.

Why can’t I do it sooner? I can – but not on the day when the actual writing happens, the assembly, the effort to launch.

Because my brain insists that, if it no longer works, it wants to spend the rest of its life stroking itself, looking for SOMETHING online to make it feel better. It doesn’t want to do yoga and stretch and breathe or anything useful (that would be against BIC). It is petulant, wants brain junk food. I won’t let it have sugar, so it wants the next best thing: endless surfing.

See now, brain. We are capturing reality, creating out of nothing, observing our self. Surely it is good enough?

Now can I go write?

Finally something happens. It is actually on again. I only required patience. And sitting here.

I block the internet. I locate the right files. I try.

End of day

It is night, and I’m posting this.

One more day of beating down the fear – the writing came mid-morning, and the scene I’ve been agonizing over for days finally cracked the shell and emerged. It showed me its path – a different one from every other scene before it. Again, as seems to happen as I get near the end, I will ask my readers, “Is it too much?”

They have been kind.

Me, I don’t know – once the pieces are assembled like molecules in beakers on a bench in a chemistry lab, the result seems to determine itself by some rules I don’t even know I’ve invoked.

All I did was assemble, mix, and add fire.

I now have a fine hard-boiled egg.

Can you feel your brain turn on in the morning?

Another new name for Chronic Fatigue Syndrome

SEID THEY SAID – HOW DO WE PRONOUNCE IT THIS TIME?

CFIDS, CFS, ME – all names for the same thing they can’t figure out. Changing the name is like when the school districts keep changing the annual test they measure performance by: there is no way of keeping score, and all kinds of deficiencies get swept under the rug, because one year cannot be compared to another. They like it that way. It keeps them from having to be accountable. Yuppie flu. Chronic Mono. XXXXX

They are now proposing SEID: Systemic Exertion Intolerance Disease. Try remembering that.

WHY?

Now maybe someone could please look at WHY we can’t tolerate much exertion? What do we lack that normal people have, or have that they don’t? What is it that interferes with the body’s normal energy production mechanisms, or possibly the debris of such mechanisms which accumulates?

I take a half-hour nap within every 3-hour period. I call it ‘mental dialysis’ because if I’m quiet, and in the dark, and horizontal, something clears out of my brain better while resting. I use megadoses of B1 because it seems to replace something needed for an energy pathway in cells that can’t process uptake of B1*. It’s taken me 25 years to find even this little bit which allows me to function a little bit. And write a bit.

DO SOMETHING INSTEAD OF JUST CHANGING THE WORDS

The medical profession just keep changing names. No accountability. NO cure.

No wonder I have to write a novel about it. The ‘real’ people do nothing.

I pronounce it ‘frustration.’

Excuse me – it’s my nap time.

Please add your opinion.

—–

*B1: type into search box for more anecdotal information from my own experiments. And I may be all wet.

I write to hear myself think

DEPARTMENT OF ODD FACTS

I will be looking for someone to study my damaged brain.

Brain research

Brain researchers get opportunities to study how the brain works, mostly by accident. In a civilized country, we don’t destroy part of a human’s brain to see 1) if said human can survive without the damaged part, and 2) what effect having a particular part missing has on thought processes and the ability to function in our increasingly complex world.

So researchers have to depend on those poor souls who have a part of their brain destroyed by disease or accident – and who are willing to let said researchers poke around and submit them to endless testing. They have studied people who have no short-term memory, or people who have lost their sense of smell, or people who cannot recognize themselves in a mirror.

Brain research subject here

Other people take notes when they write, before they write, after they write. I take a LOT of notes.

Why do I think I might be useful to researchers? Because I seem to think outside my head, and store endless notes before, during, and after the process of writing fiction.

My average seems to be somewhere around 10 to 20 external words per word of finished fiction.

That’s a lot.

How much verbiage are we talking about here?

When I stopped to think about it, it means that for 10,000 words – a typical chapter – of Pride’s Children, I have written 100,000 to 200,000 extra words. When I finish Book 1, at around 150K words, I will have, stored in files, on the order of 1.5-3.0M words. And when I finish the whole story, at 400-500K words, there will be 4 to 10 MILLION words in these files.

Those are my ‘learning to write’ words, representing the more than 10,000 hours I have spent on this project, and what will be my first published work.

I keep track of everything in writing – personal and story – as it occurs to me. This clears it out of my brain so I can think of the next bit. So the files are closely reasoned bits of why a character would or would not do something – mixed in with bits of how I slept last night and why my brain refuses to kick on this morning.

Increasing writing speed – NOT

You’d think I’d get better at it, wouldn’t you? That I could figure out how to shorten the process of turning ideas and outlines and spreadsheets into a story.

Instead, what seems to have happened is that I have gotten very fast at producing those 10-20 words. I let the imagination run free – on the computer – getting it all out where I can’t lose it, because my in-brain storage system is damaged, and I need to use an external hard drive.

What might this mean for researchers studying ME/CFS?

I’m pretty sure all this happens because of the CFS – the brain is actually damaged in some important way, and I have found a way to operate around the damage, so I can write.

Surely this means I might be of use to SOMEONE in the medical research community?

And the best part for all involved? I won’t have to actually let them study me. I can give them my files, my best wishes, and let them go through all that stuff for hints of useful bits. There should be some grad student somewhere who can figure out how to handle the deluge without getting wet.

It’s already digitized, guys! Except for the twenty or so packed notebooks, and reams of early drafts printed out, it is in a digital form which someone could invent a bot to read, AND I am a tidy person: when I learned Scrivener (where all this stuff is stored in projects), I realized that the most important thing I could do for posterity was to date-stamp every entry.

And most of the files are in strict chronological order.

I can’t see how much more useful I could be to medical science than if I went out and purposely put a hole in my brain.

Let me know.

How about you? Are you a useful subject for brain study?

Writing can’t compensate for no sleep

If your only problem is procrastination – or having to work a real job or take care of children, and that’s why you can’t write – some notes I took a couple of days ago will show you why I can’t write today – and why I’m so d*#&^d slow. Maybe it will make you feel better!

Note carefully: this is NOT a whine. It is an attempt to manage myself better. I try. Honest, I try.

January 5, 2015 at 10:48 AM

My REAL problem is and has always been that I want the appearance of making a free choice at all times – knowing perfectly well that my mind is subject to all kinds of constraints AGAINST free choice most of the time.

For example: right now. I resisted blocking the internet for over two hours, because I was unwilling to admit that I’m operating on autopilot, an autopilot set by a lifetime of bad habits.

How did this particular morning qualify as NOT free will?

Well, I finally forced myself to go to bed at 3AM. Not good.

I woke up at 8:30 (do the math), got out of bed (to keep me getting up as early as possible: one of my goals), took my pills, and told myself I would get right back to sleep asap, because that was the logical thing to do.

I didn’t turn on Freedom, and block the internet so I could start writing – because that requires willpower, and there’s no willpower possible in my mind when I’m this tired.

So, of my own free will (operating on what?), I decided to just check my email (not much there new since 3AM), catch up on anything new on the blogs I follow (thus stuffing my head with my debris I don’t have the capacity to process right now), and run a few Sudokus (KNOWING they would show horrible times which merely confirms what I already know: I’m too tired to write).

I think my mind does this because it knows perfectly well that I can’t write when I’m too tired.

But I hate having to rest, thus taking my mind out of the state of being in control for more time (the mind likes to be in control).

So, instead, the mind decides to use its control time ‘as well as possible.’ Which means… this is getting circular.

The root cause

For me, with the CFS and the brain fog, it is a constant battle between ‘taking care of myself’ like a baby, and ‘feeling human.’ Adult human.

My limitations don’t necessarily impose NEW constraints, but they definitely push me into the realm of overwhelmed much sooner and harder than if I were in my right mind.

Getting real control of my mind and myself involves doublethink: give up control and get some rest, and MAYBE you will get some time ‘feeling human.’

I hate resting – because even though it usually works, it feels like going backward.

And it comes down to the most basic part of being ill: I shouldn’t have to be. I’m still battling the basic facts of my life: I am not who I used to be, and will probably never be that person again, and I resent the heck out of that.

I don’t WANT to be noble and inspiring and writing IN SPITE OF CFS. I want to NOT HAVE CFS.

The consequences: I only hurt myself.

Da rules

Sigh. Again.

Okay. I’ve been up over two hours, so that means, according to the rules of my existence, that I need a nap.

I’ve managed to drink the protein shake BEFORE the nap – another rule – so that I’m not starving when I wake up, and then lose more time because the shake is cold and that makes me sleepy.

I turned the heated mattress pad on – another rule – so I’m not too cold to sleep if that’s what my body needs.

I’ve written SOMETHING – this – another rule: get started with the writing SOMEHOW.

I’m starting a new scene, which means – another rule – that I finished one yesterday, YAY/I’m awesome/fist pump required, and I’m slowly moving in the direction I insist I want.

I’m focusing on my mental condition and writing something down about it – another rule: get data whenever possible, to mine for long-term information about the self, to be used to refine that self.

I’m turning off the lights, sleeping the computer (so it doesn’t beep at me), putting the cellphone near me (so I don’t have to get up to answer it if it rings), getting the eyemask (so the light doesn’t keep me from sleeping/resting), making sure the industrial-strength noise-and-light-blocking headgear is next to my bed (in case some other human decides to make noise, like my neighbor with the leaf blower, or the garbage collection folks, or the tree-cutters-and-grinders – or the wind): rules. Rules. RULES.

Aargh! Please excuse me while I put myself to bed for my next nap. I’m getting grumpy again, and it might help.

When I get up, I’ll run through the ‘at least’ list – to revive my sense of gratitude because things could be so much worse – and get to work.

Scene 19.3 isn’t going to write itself, you know.

January 5, 2015 at 12:43 PM

Two hours! Two hours! That’s how long it took (not really surprising after that short a night’s sleep, but…Two hours!).
I’m more coherent, peeved at myself, woken up from a violent dream where I was trying to integrate all those pieces, and behind.

And since my housekeeper/assistant/whip-cracker comes at 3, I can’t just extend the writing time to compensate.

At least – 19.2 is finished – YAY!

At least – I don’t have to go to work.

At least – I don’t have a crying baby, or a sick kid, or a current crisis in the family (not an urgent one, anyway).

At least – I live in a heated house (the wind was a front which blew all night, bringing New Jersey’s temperatures down from 60 to 30 overnight).

At least – my lovely and capable spouse has us well supplied with food.

At least… the list is ENDLESS for the things I am thankful for and appreciate and don’t take for granted.

And one more piece of data – this post – registers the change before and after sleep (pay attention, Alicia!), showing how useful those darned naps are when your brain is brain-fogged and iffy and refuses to accept that we – it and I – are not the same as we were 25 years ago.

Not bad.

Maybe some day I’ll actually win this battle.

How about you – what do you keep having the same argument about in your life?

Writer’s consequences: why writers hate Saturdays

The conspiracy reigns

I am convinced there is a signup list somewhere.

We have 7 neighbors on the Court, and 5 close ones on the street that backs up to ours. There are probably another 20 or 30 close enough to participate in their favorite activity, ‘torture Alicia while she is trying to write.’

How? Remember the list? It has 60 minute slots from 8am Saturday morning to maybe 6pm Sunday evening (or two hours after the end of daylight unless there are exterior lights), during which each neighbor is allowed to sign up, exclusively (and that’s the key), for lawnmowing. The idea is for the horrible racket of man’s best friend (the other one barks all night – I think there’s a list there, too, but not everyone has a dog), to be a continuous roar for the two weekend daylight hours, and make sure that only short breaks (for those whose lawns are too small to take a whole hour to mow, and who are too lazy to do it twice just to fulfill their time obligation (slackers)) are allowed to happen.

Requirements for membership

You ARE allowed to use a leaf-blower, edger, or weed-whacker outside your assigned time slot, or to finish using up your time DURING your allotted slot, so that the constant mowing note of one neighbor MAY be punctuated with other sounds at random. Extra points are earned (which I believe can be traded in for a more favorable time-slot the following weekend) when the weed-whacker is gas-powered or when you hit the fence slats repeatedly with the string cutter thingy, producing the lovely and desirable ‘washboard effect.’

You ARE allowed to turn your machine off periodically, ostensibly to refill it with precious fossil fuel, so that the tortured think, ‘Ah, it’s over!’ when, in fact, it is not.

Scheduling

The earlier slots are granted in order of horsepower, descending.

In all the years I have observed this ritual, I could count on the fingers of one hand the times when two or more of the shadow congregation were outside simultaneously.

Yup, it’s a few minutes before the noon-to-one slot, and there’s C’s lawnmowing service, turning up to un-cart their industrial mower, and be ready to start right on time.

My own husband, this very weekend, almost gave the whole thing away, when he incautiously asked if C next door had finished with the leaf blower, so he, B, could go out to mow our lawn.

Defense mechanisms for the writer

I have some. I’ve written about my industrial-strength hearing protection (Sensory Deprivation Tank). I should mention, though, that wearing headgear pressing in on your head for hours and hours while writing creates headaches.

And that when I take the naps require to support my filthy writing habit, wearing full headgear means it’s very hard to get comfortable.

We writers suffer for our habit – and for our readers.

Ultimate effect?

It reinforces brain fog.

It makes it hard to focus.

It makes it unpleasant to write.

And it makes it possible for household members to sneak in (they claim they knocked) and touch my shoulder, and make me jump several feet straight up.

But I’m going to finish Pride’s Children regardless of the efforts of the shadow organization of neighborhood lawnmowers and commercial associates.

Just you wait.

Living with CFS: approaching the anniversaries of deaths

Days that remind you more of loss

One of the hardest things to do in life is to face, every year, the days that remind you of the death of someone loved and dear.

This will be our first year without my Dad for Thanksgiving.

And to see how that interacts with the things that are still going on in YOUR life, good and bad, but still in life – and not after it.

And no matter how close you are to someone else’s family, no matter how much you thought it affected you, and you shared someone else’s pain, when it is your own pain you have to deal with it all over again.

It is impossible to do enough

Another guilt? Wondering if you have done everything you can for the person whose grief you share, but more remotely. Don’t worry. You haven’t. Maybe you can’t.

There are deaths in the family I’m removed from – the hidden cost of living far from home. If you see someone rarely, you are less affected, by definition: there are simply fewer moments that remind you of the loss. You see the grief as if reflected from a muddy surface. You can imagine – but, even with empathy, imagination is not experience.

After you see Rosemary’s Baby, and experience the intensity of loving a child even if its father is the devil himself, you go home. If you have children, they are NOT the devil’s spawn. The emotional intensity the moviemakers confer is of limited duration. The most they can hope to achieve is an intense moment or two during and soon after.

Maturity consists in going there, not hiding. Realizing how little you have helped someone else, at the same time you realize you cannot be helped yourself: grief will have its way and its time. Wishing you had done more, could have done more, could still do anything that might really help someone else’s grief.

Grief and loss are self-centered – for everyone

It all comes back to ME: if someone else dies, I can die, too. WILL die, too.

It does no good to try to distance yourself from that thought – even as you tell yourself not everything in life has to be about YOU. We are creatures who see everything through the light of our own consciousness. Because that’s all we have.

And all of this hurts, will hurt, never really stops hurting: every human on this planet must deal with the deaths of all loved ones who go before. Which sounds lovely and general and lofty. Until it is your own parent. Or worse, your own child.

It is harder for those who can’t afford grief

This is harder for people with CFS. A PWC (person with CFS) has two bad choices on how to react. Don’t take my word for it: I will explain.

The first choice is to react the way a normal person reacts: many different ways, but most of them involving feeling the emotions, the sadness, the knowledge that nothing will ever be the same – and then having to deal with the aftermath of that reaction for far longer than a normal person would.

The second choice is to mute your own reaction, to avoid the triggers, to grieve very slowly and mildly – so you can survive. To know yourself, remember your own limits, and push away what you can, suppress, minimize, avoid, circumvent.

For me, with CFS as a constant anchor around my neck, I grieve that I cannot grieve more. Normal grief is paralyzing to ‘normal,’ ‘able’ people. To me, the aftermath of the adrenaline is crippling. As I have gotten a bit better over the years, I can take more without coming to a full stop – but not much. Normal grief is cleansing, as are tears. I can’t afford normal grief. I don’t cry any more. Not really. My body is extremely limited in how it processes the metabolites of grief. I have learned to guard – I remember too well how the aftermaths have been.

The appearance of unconcern is just that, appearance

It makes me appear cold. Unconcerned. Uncaring. When all I wish is that I were able to just let go, I’m doing the self-talk that makes the stages of grief go faster: “If I can’t change something, I must reach the acceptance stage sooner.” And there is nothing more unchangeable than death. I hate it. Moderately, of course.

It would be stupid for me to let my grief go on longer than the grief of those who are the primary mourners – but experiencing even a fraction of their grief will, in effect, do exactly that – because it takes me so long to recover from even a portion of normal emotions.

You don’t see this discussed much: how the disease affects the ability of otherwise empathetic people to experience both the emotional experiences, and the healing thoughts that need to follow. A stunted emotional outlook BY NECESSITY is another cruel twist to add to the effect of the disease: I can choose a stunted response to what happens, and still be felled by the recovery – or I can choose (or be forced into) a proper emotional response, and pay disproportionately for it and be seen as exaggerated in my response. Not pleasant choices to contemplate, but ones which must be acknowledged.

Just as eating a lot of sugar and putting yourself into a diabetic coma when your parent dies would be seen as a possibly logical but really stupid action, letting in all of the waves of grief is a really stupid action when you KNOW, from previous experience, how much it will cost – and how, if you truly give in, you will be seen by those who have to deal with you as a diva? prima donna? person having an emotional response they are not entitled to? More Catholic than the Pope?

Anniversaries – when it’s harder to ignore loss

There are anniversaries coming – there always are. A few this year are being hard to deal with because the grief is so fresh – and because it reminds me so strongly of the intensity of previous ones. I thoroughly hate that I must continually mute my own feelings. Writing them down helps – at least I can acknowledge them before trying to ruthlessly suppress them.

It is NOT all about me, but this disease has a lot more to answer for than is realized.