You need your brain ON to write

The title of this post is a truism: you can’t write without your brain working in creative mode.

What do you do when your brain won’t turn on?

For me, ‘creative mode’ requires an alignment of planets. There is a mental component to it – fear, or not wanting to write today, or any one of a million distractions or responsibilities – but the main component is physical: I have CFS, my brain doesn’t work very well a large part of the time (we call it ‘brain fog’), I can’t think analytically, and I can’t make decisions.

History repeats itself

I have blogged about these little problems in the past. I’ve had them – and their cousins (the ‘dog collar’ of swollen lymph nodes, mild fevers, a fair amount of a weird pain, and a long list you don’t even want to hear about) for 24 years.

In some sense you get used to it – you don’t have a choice, and spending time with a bad attitude helps nothing, improves nothing, and wastes your remaining good time.

In other senses, I wake up each morning, and for a second or two, if the pain isn’t too bad, I feel ‘normal’ and ready to tackle the day. A feeling which is rather fleeting. But also reassuring: I haven’t lost the memories yet.

Don’t pity me – everyone has problems. We all have something every day that would be very hard for someone else, and most of us do the best we can.

Hope springs eternal

BUT – and this is the big one – I live with the wait, first for a cause, and then for a cure.

Most of the time I don’t bother even trying to educate my doctor. It isn’t worth my time, and she’s not interested: she makes sure my heart is still pumping, etc. I do routine maintenance, grumbling, but I do it: it would be really stupid to die from something preventable like colon cancer.

Writing fiction with CFS brain

But to write I need more than I usually have to function with. I fiddle with all my control knobs – sleep, pills, caffeine, habit, pacing – so that each morning I can sit in front of my computer for a few hours (with a couple of half-hour naps carved out), and have my brain in as good a state as it’s going to be for that day. And I write fiction, the hardest chore I have set myself, and my greatest pleasure.

I discovered over the past year (type B1 in the search box), that really massive doses of Vitamin B1 helps me think.

The mechanism seems to be that my cells don’t take up/make energy through the normal metabolic pathways, but if I flood my bloodstream with massive amounts of B1, it is available, sort of, to the cells anyway, and I get a bit more energy.

I’ve estimated 20% more energy, but, because I always run slightly below ‘functional,’ what it does, in effect, is to kick my brain up over that minimum needed for writing – for a couple of hours.

It is never anywhere near enough.

Is ‘better’ available?

Normally, I don’t bother with many of the supposed ‘cures’ or ‘treatments’ for CFS – most work for a small subset of people with CFS, and the many I’ve tried over lo these many years haven’t worked, and each one of them took time, money, and effort just to try, plus played havoc with my spirits (you always hope this will be the one which works).

Until the B1. Which seems to work a bit for me – oh, surprise!

So when I hear about a new study that was combining a stimulant (Ritalin – which I tolerated when I tried it, but didn’t get much benefit from) with a concoction of vitamins (like the B1) intended to ‘support the immune system’, I got my hopes up. Again.

The Chronic Fatigue Syndrome Research Program was having trials at four locations, including Stanford (!) and NY (which I’m close enough to get to by train), and was recruiting people with a whole host of requirements for what they could be taking, etc., but I sounded like the ideal candidate: only on one prescription med, fairly dysfunctional, rather standard, middle-of-the-road, garden-variety CFS. The trial people claim to have had good results with their 1st and 2nd generation trials (small). I got my hopes up – and then it turned out I am five years too old for their trial. Bummer.

I think the mechanisms by which it could work, that my metabolic pathways simply aren’t up to transporting things properly, and so flooding the bloodstream with the necessary bits for metabolism – so they’re available – as a potential way around the non-working bits – is a real possibility.

After all, we supply insulin to people whose systems don’t produce it right or enough, don’t we?

Doing my own version of the protocol

So I called anyway, ended up talking to a representative of the pharmaceutical supplier, and she mentioned that they had a non-prescription version of their protocol – using caffeine instead of Ritalin – available on their website. And, said she, some people actually like that version with caffeine better than the Ritalin version, because the Ritalin left them feeling more ‘wired.’

Fine. It’s expensive for vitamins, but not that expensive in general (a month’s supply for around $100). And an indication that some people have gotten it paid for by insurance if it works for them and their doctors will certify that it’s ‘medically necessary.’

So, on May 25th, I stopped taking my B1, and substituted the KPax protocol, with the following note to myself:

“Crossing fingers that it works at least a bit, and better than the B1. And that I don’t get TOO far behind in Pride’s Children because I’m trying it.”

Well, I tried. Not only didn’t it work for me (not a huge surprise if you have CFS), but in less than a week I wrote:

“The last six days have been a version of hell, which is a very odd thing to say about days in which there was time for a couple of bike rides, and I spent time pulling weeds quite happily in my garden, and I got my time in front of the computer, first thing every morning. I even got reasonable sleep – plus 3-4 daytime naps each day.

Then why the doom and gloom?

Because I got nothing written. No blog posts, but more importantly to me, not a single word of fiction.”

Massive fail

My brain went completely AWOL. No kicking over. You should see the pile of extra mail I haven’t even been able to open, much less process.

It not only didn’t work, but it reversed the positive effect of the B1.

I stopped taking it – I couldn’t bear to feel that brain-dead a minute longer. I lost a wonderful week of spring weather, and had those morning sessions where I sat happily at my computer all morning – and managed to write a few comments – but produced not only no fiction, but nothing else, not even a blog post (which I usually pop out fairly quickly if I have an idea).

NOTE: this does NOT mean the combination won’t work for other people. It does NOT mean that it might not work for me if I had been willing to go on longer (I had intended to do three weeks at least). I wish the trial well. Maybe the Ritalin version would have worked…

I just couldn’t take it any more.

Reversing the fail

I’ve spent the next four days, up until this morning, building the B1 back in. For the first time in ten days, I had a bit of a useful working session this morning, and made a good dent in a scene I’ve been incapable of writing, physically incapable, for ten days. I managed to put up my weekly polished scene last Tuesday only because it was already written, and I’ve done the upload a lot of times.

And I’m sitting here putting these words onto the page, and when I’m done I’ll add a few headings and post it on the blog, as I have done over 200 times since September, 2012, when I started blogging.

I hope tomorrow – and future days – back on B1 I will get at least that 20% effect which I so callously risked.

I quit trying ‘better’ to ‘work with what I have’

I will not be trying ANYTHING that doesn’t have major science behind it until I finish Pride’s Children, Book 3 – don’t ask when! I’m still hoping to finish Book 1 in time to publish in September.

I am doing everything I possibly can to stave off any more back surgery – that horror is for another post, but it would cost me (from experience with the first), so much pain and brain-fog that I would be taking at least a year off from writing.

So, if you’re healthy, and you write – Celebrate! Don’t let stupid little things like TV and eating, showering, and reading, get in your way until you’ve finished the day’s writing. (Or whatever works for you.)

Don’t pity me – please! – this is my life and I’m going to live it.

But don’t suggest I try ‘healthy eating’ or ‘exercise’ or ‘these wonderful vitamins’ or ‘ginko biloba’ or ‘probiotics’ or ‘NADH’ because I simply can’t afford to lose more time – and feel as if my mind is not my own for such a huge period of time.

There. You’re up to date.

Please feel free to comment – as another blogger says on her blog (and which guilts me into leaving comments): Surely you must have an opinion about this?


14 thoughts on “You need your brain ON to write

      1. clairechase51

        Whew!! This must have really been hard! Well, as I wrote on FB…at least you tried it, you won’t need to wonder if you should have tried it, you did!


        1. Alicia Butcher Ehrhardt Post author

          Exactly – and glad it didn’t take me the length of the study. ‘Course having made a commitment, I would have felt I should keep it, and there is a possibility it might have helped – but there would also have been some support, other participants, etc.

          That’s the worst thing about this disease – the state of ‘official’ medicine being zero, you end up a guinea pig – with no guidance. Imagine trying to manage diabetes that way!


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