CFS notes: surviving the dreaded relapse

Are you* having a CFS relapse?

Before you can deal with a CFS relapse, you have to become aware you are IN one.

You would think that would be obvious – staring at the wall, swollen glands, more exhaustion than usual, insomnia worse than usual, odd reactions to normal foods, a general feeling of being depressed and not being able to kick myself out of it – these are some of the symptoms.

Unfortunately, I have all those symptoms in greater or lesser degree most of the time, so I tend to try to ignore them, and soldier on. I have writing to do, and it is finishing Pride’s Children, Book 1, and I don’t let myself diverted too much by things I know I can’t do much about.

Aren’t you just undisciplined and lazy?

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.

Official confirmation: this writer’s life is circular

On the general principle that if you can’t find something to read, you should write something, I go to the list of ideas I have for blog posts, all, as in a seamstress’s workshop, in various stages of completion, lying around draped over forms and mannequins and furniture.

Treats!

A year goes by – everything is the same

I find this, from almost exactly a year ago: May 7, 2013 10:19 AM. [NOTE: I never turned it into a post, but I’m fidgeting because I can’t write, it’s raining (and I got the last of the garden fertilized this morning, and there is NO energy left and major brain fog), and it made me chuckle to see how little has changed.]

At Madgenius.com, Amanda Green complains It’s Tuesday, where’s my brain. I start writing a comment. It gets too long, so I bring it to my own place:

I’m feeling a bit snarky, too, it being Tuesday.

Before I comment, I want to say that
1) I am not minimizing YOUR pain
2) I do not want sympathy/pity/whatever. Okay?

Writing with CFS and brain fog: Tradeoffs

The old me

Since last year – at about the same time of year (!), when I posted my 3 part series, Rules 1-10, Rules 11-20, and Rules 21-30 – at the height of try to get control of my body and brain so as to get some reliable regular writing output – an enormous number of things have changed.

Because I finished taxes last night, and have a few brain cells still firing tonight, I thought I would post about how things have CHANGED. Yup, changed. Improved. Become better. Gotten reliable (sort of).

Update: vitamin B1 and benfotiamine to help write

The basics: I am still using vitamin B1 and benfotiamine to help me write.

Previous information on B1, energy, and writing

For those following along (use ‘B1’ in the search box), this is an update on what I’m using NOW.

My regular routine is to take my FIRST DOSE of B1: 1500 mg. of Solgar Super Potency vitamin B1 and 450 mg. of Source Naturals Benfotiamine (benfotiamine is the fat-soluble version of B1) first thing in the morning with breakfast (usually a protein shake).

Then I wait for my brain to turn on. My brain on waking is in better shape if I get a good night’s sleep (duh!), but no matter what I do, I can’t seem to get it to work very well first thing in the morning.

Mental dialysis, brain fog, preemptive rest – writing with ME/CFS

A tantalizing thought: a possible mechanism to explain how and why taking a nap clears out the brain of a PWC (Person with CFS – ie, me) so she can think – and write.

I have often wondered how a standard technique for us PWCs – resting after, and even before, energy is required – works. For me that energy translates to the possibility of writing: without a working brain, attempts to write, fiction especially, come to naught. I just can’t do it.

I can read – which is where surfing the web for SOMETHING interesting to read to keep me from going mad comes from. But I can’t write, and if I CAN write, it is usually not creative fiction.

Recovering from Christmas – with brain fog

Behind – again – still

When you have CFS, life spits things at you on a regular basis, and you do the best you can to drink from the firehose – and fail continuously.

That’s just the way it is – and there isn’t much you can do about it.

The list of broken promises to myself – and broken implied promises to others – merely gets longer every day.

I don’t STOP making plans, and promises to myself – it is human to constantly monitor oneself and one’s surroundings and to be alert for ways to modify what is wrong and improve ‘things’ – but I get further behind each day from where I might have been.

Holidays stress everyone’s coping capacity

People with CFS already live on the edge: it doesn’t take much to nudge us over.

ME/CFS and B1: resuming B1 use after possible overdose

I’m back on the stuff (B1), successfully so far.

One of the scariest things in the world is what I’ve just gone through: figuring out that you have a massive overreaction to something you ingested, but going back on it anyway – extremely cautiously.

How to proceed with caution

So far, having gone from no B1 (and being completely wiped out – back to taking lots of naps) very slowly to a lower dose than I was up to before (1700 mg total B1 vs. 2600 mg), I am stopping to analyze – and plan out the future.

The red lobster tale: ME/CFS and B1 overdose possible – CAUTION

From the PREVIOUS POST – and now I think I’ve figured it out:

The lobster tale

Today I woke up, and was a giant red lobster, fire-engine red from my feet to the top up my head under the hair, and down to the finger digits and thumbs…

—

It happened again – CAUTION

And it is important that I post this information, in case you are taking/considering B1 for ME/CFS symptoms OR FM symptoms.

NOTE: I will still try to take B1 because the positive effects are there, but there will be some figuring out going on.

The red lobster tale: writing in minor emergencies

For your enlightenment and entertainment, and in case it happens to you:

The lobster tale

Today I woke up, and was a giant red lobster, fire-engine red from my feet to the top up my head under the hair, and down to the finger digits and thumbs. Remember Gregor Samsa? Kafka’s hero who woke up converted into a giant bug in Metamorphosis? Except in red.

Red.

It didn’t itch, but it hurt. I thought for a moment I had contact dermatitis – had somehow gotten the wrong laundry detergent on my last wash. I took two Benadryl – but it didn’t seem to be making a dent in the lovely scarlet.

The B1 bomb: an exercise in hope for a writer with CFS

***PLEASE DON’T TRY THIS EXPERIMENT AT HOME – unless you’re me, of course.***
***DISCLAIMER: I am not a medical doctor, nor do I play one on TV.***

I am, however, a PWC (person with CFS) of long standing (24+ years), and can tell you that hope is a problem when you have a permanent disability or a chronic illness.

From Wikipedia comes a good definition of hope: “Hope is the state which promotes the belief in good outcomes related to events and circumstances in one’s life.”

I have always been fascinated by the concept of what happens to a person when a long period of focusing on illness is suddenly changed because the illness is cured, or improved.