"Getting the hang of it (mind the banisters)"

The five minutes an hour activity, with a certain limited flexibility, is something I seem to be getting used to, and appears to be somewhere near my sustainable limit.

I suspect if I'm going to get properly un-tired I may have to go at this rest business a little more strictly still, of find a way of accounting for, adding up, those minutes spent going between resting and not resting.

Passing those banisters going up or down stairs for example.  That does add up to a significant percentage of the day's energy "spend" but it doesn't appear on my time-sheets as yet.  Perhaps I shall have to note my average number of level changes per day, and the time they take, and knock off one or more hours (5 + 55) from each day's plan to cover these little "extras"

One good short coughing fit could cost me an hour, including recuperation in proportion.

My gardener comes for two hours a week, and we may be making headway against the weeds, but I'm just realising that unlocking  the back gate, greeting pleasantries and discussing what most needs doing is really another five minutes of activity.  Then going on to do five minutes in the garden myself, as I have tended to do, is really a double shift, unless I bend the rules and spend two hours crashed out.  Even then that's not the target pattern.

These little things add up.
What drops through the letterbox any given day may be no work, or several hour's worth.
Possibly just in the reading.

I'm a little way from shifting pianos.
Or is that a reference lost on a younger generation?

Marbles: not lost, just rearranged.

A good quiet day, with no need to fight to get rest, and no need to fight to do things either.

In A-Team terms spending fifty-five minutes in every hour in complete rest, or in something that's a good approximation to it, isn't that great a plan, but it has at least come together.
All the evidence points to it being the right one for now.  And ME /CFS isn't a problem that gets solved in one hour minus advertising breaks.
It's far more a long-running series but, if well-written, one precisely without sudden shocks and cliff-hangers.
(It's not going to attract much of an audience, then.  Just those who can't easily change channel: folk with CFS, and their close friends and relatives.)

Let's keep it slow and steady.
Today's episode of "Life with CFS" features a lot of lying down doing nothing much (sometimes the radio is on, and sometimes it isn't) interspersed with a few (and brief) highlights such as assembling simple meals, checking e-mails, Doing a little light experimental Dr Frankenstein work changing the frequency of a radio-control car, and yes, playing with some marbles.
Twenty-four to be precise, in a "knight's move" solitaire game.  This is proving a very satisfactory gentle distraction for when sleep does not want to come, and the brain does not want to sit completely still.

I'm not attacking it like solving a chess problem with a time limit, but playing gently, trying ideas without rigorously analysing them.
Toying.

Toy does very well as a verb, if you can lose the negative connotation of a cat being cruel.
After all, surely toys should be more for toying with than for obsessive collection-filling.
To my mind, anyway.
And now for some more rest, when I may toy with an idea or two, but nothing more.

One can overdo even playing with toys.

Today at the Olympics...

OK, I was impressed, even somewhat against my prejudices, by the opening ceremony of the London 2012 Olympics.
(Excepting the Arctic Monkeys who just made a noise, but that might be down to my age.)
Hordes of people, together, having a good time.
Fit people, too, and I'm not just talking about the athletes: the drummers and other performers as well.

Yes, I enjoyed it, but a bit of me was feeling an utter outsider.
I could not even have walked around that track, or walked to take a seat in the stand without dire consequences,
and as for joining in with hundreds of others in a cooperative effort... five minutes an hour of just being with people is my limit, without incurring "payback".

No, a life of essentially enforced inactivity ("If you know what's good for you...")  is not the same as an easy life of leisure.  I suspect some who have friends or family members with ME/CFS don't get this.  It's not effortless laziness (with official approval, yet!) at all.

The sheer Herculean effort of resisting the temptation to *do something* out of frustration, or out of desire to achieve, out of boredom, out of wishing to stop just for a moment the nagging of idiots who don't understand but are sure they do, perfectly.

It requires so much discipline and practice, subtly employed since fighting with yourself also eats up precious resources and is counterproductive, that maybe it could be an Olympic event.

But when it's being done well there is precisely not much to show, which is why it can look like laziness or depressive apathy to the untrained eye.  Hmm.  I can't see it ever being a popular spectator sport.






Ha!  I have just thought of a sport or competition which is distantly akin: slow pipe smoking!  
The aim is, with a given amount of tobacco, to nurse that pipeful longer than any other competitor.
At least there you can have the excitement of seeing whose smoke  gives out first.
Yes, it can be found on YouTube... The world is always stranger than can be imagined.
And the presenters of Top Gear with pipes... Now that's just hilarious.

With CFS you take the fun wherever you can find it.  It can be done.
Another challenging event, perhaps: finding pleasures in tiny things.
Some of us with ME might even have a competitive edge there, but I'm not sure how it could be fairly judged.

And Repeat...

Not a remarkable day, as reported to, or seen by, anyone outside.  It's only the details seen and felt from the inside  which make much difference.
Less pain than usual on waking and |"surfacing", but more brain fog for some reason.
An interesting variation: stood staring at the morning's pills utterly convinced I'd missed out one of the set, as happens, only I couldn't decide which one it was because I hadn't.
It just took some time for one bit of me to convince another bit of me that such was the case.

When you know your mind's thinking is likely to be suspect, what do you check it against, and how, because apart from anything else the bit doing the checking might be, just at that moment, the bit that's playing up.
Or it might be the bit that's utterly confident that nothing is wrong.

This can fill a morning with nothing happening except the brain playing entertaining ping-pong with itself, or the fogginess can be such that there is clearly(!?) nothing to do except lie down and wait for things to improve.
This usually involves falling asleep at some point.
Gosh, what an interesting life...

Following that three "fives" spent on the railway solved two track problems, and solving such is a pleasant pastime.
Problem one turned out to be a very short stretch of track off the level, easily re-packed and checked with a spirit level,
Problem two turned out to be a slightly longer piece of track heavily slimed by slug-trail, which is actually unusual.

Not world shattering, but my world.
Small, rather confined, but mine, mine I tell you!

The jury is out on whether I'll last (by either enthusiasm or simply energy failing) to watch the Olympics opening ceremony.
That's a totally different world.
Out of reach mentally and physically, measured from where I am.
(That's the ME *and* the Asperger's!)

Never mind.  I did so well today that it appears I'm going to be allowed to do the same tomorrow.  Or something very similar, anyway.
For now there's no room for sweeping change or galloping ambitions.

Don't Spend It All At Once.

Yes, today it feels as though I've been given something akin to a little bonus of pocket money.  And yes, that does come with a temptation, familiar from childhood, to rush out and spend it.
So much to do, so little energy.
(So many aching muscles!)

My sensible self appears to be winning, insisting on "banking" most of this seeming improvement by doing very little, if anything, extra.
And making sure plenty of "saving" by taking rest also occurs.
Cries of "spoilsport", "miser" and "you're no fun" seem to echo from the distance.


No, it's not easy having fun, or being fun for the sake of others, while sticking to a tight energy / activity budget.
About as much fun as having just one person at the Christmas dinner  table on a strict diet, I should think...
...and I can just imagine all the well-meaning folk saying (for the happiness of the whole gathering, of course ) "I'm sure you can let yourself go just his once."
However that may sit in the dieting world, and I hold no especial brief for party-poopers, with CSF that's an ill-informed invitation to hell.
For some just especially because they want to be able to join in, to be able to please their friends, to just be "normal" for once, for heaven's sake.
But the cost, the cost....

Just occasionally the small network and limited number of friends that tends to be a (far from inevitable) corollary of Asperger's syndrome is almost an advantage.
Especially when "I can give you five minutes" means you actually set the timer, rather than implying "do please note, I  am quite busy" in social code.
When things are that tight, "Don't spend it all at once" is very good advice, even if the "all" is hardly an impressive bundle of loot
(I mean, it could be "blown" in one good long conversation!)

Never mind: today I splashed out a little and had
three loose wires soldered,
two brass domes polished,
and a railway carriage roof stuck down.

Don't ask me about the higher numbers.  Not yet.

Remembering, forgetting.

Still running on very tired, though I got even more rest today.
My once-a week-cleaner and my gardener both came, so several of my permitted "fives" went while they were here, just in conversation.

It's a good job I don't have too many friends or contacts: I'd never be able to cope with them.  I've had to drop internet contacts and groups I enjoyed as it is.

Just coping with day-to-day looms much larger, especially if fatigue eats into concentration.  It's the semi-automatic things that seem most easily affected: the sequence for making breakfast or a pot of tea, for example.

Typing is a good warning sign of fatigue fog creeping in: the typos go up, quite markedly, but I have a particular quirk of starting to hit the space bar one letter too soo nleaving the last lette rof the word attached to the front of th enext.
A definite sign to stop, indeed that I should have stopped a while earlier.

Another notable forgetting: my medication, this morning.  That doesn't happen often, but it happens.  More serious than putting shaving cream on the toothbrush, but of similar origin: familiar routines cannot be reliably left on "automatic pilot" any more.  Which means paying more attention, which is, once again, demanding.  And a pain.
And gets forgotten too, from time to time, until the next "absent-minded" incident.

Remembering?  Well there's trying to remember when to be alert, and trying to remember to set the alarm which helps me remember when my time for activity is up.  Maybe I need an alarm to remind me to do that.
(Shades of Professor Branestawm, who had a pair of glasses to look for all his other pairs, (if anyone remembers him!))

That's part of remembering my current limitations, without getting obsessed or depressed by such.
Especially when presented with reminders of other days.
I remember when I could...
But let's not go there too much, unless it can be done as pleasant memories, rather than as sharp contrasts with the here and now.

Up Snowdon in the morning (and down), and five-a-side football on the beach in the afternoon?   That must have been a different person.
In some ways it was, and in some ways it wasn't.
I must give that some thought, and *that* hasn't changed a fraction.
Except through sheer practice and experience.

♞ An odd day, that...

Another definite ♞ day, which is a bit odd because quite a few things went right.


Mood, OK to good.
Accomplishments: a few small things.
A second train is now sharing the mainline, due to two five-minute weeding sessions and one track-cleaning one.

Groceries arrived and were put away (two fives.)

But throughout the day my arms and legs have ached and felt like lead.
I may be into "new experience" territory.
I'm certainly worse than I was last Tuesday, despite all the rest I've been giving myself, and I have.
A good number of "fives " were not taken, me staying horizontal for longer stretches.

I'm going to give it a few more days of more than target rest, but I'm beginning to suspect I can't just put this down to my (hardly demanding) outing last Thursday.
I'm beginning to think the limbo bar has actually lowered again.

Give it to the end of the weekend: that should give a clearer picture, perhaps.
The bar can't get a lot lower before I have some trouble looking after myself, living alone.

No panic, but I'm certainly noting the proceedings "with interest."

Keep Calm, and Carry On. Again.

If the sentiment is right in the first place, it's going to be so again and again.
Keep on keeping calm.

No need to put masses of thought into continually inventing new tricks, ideas or approaches.
It's far more about keeping to the basics.
Even if that feels boring, and there is the nagging thought insisting,
"You should be *doing* something.  Making a move.  Taking the initiative..."

Gnawing at the confining bars of my cage like a trapped rat?
I don't think so.

In any case I *still* haven't recovered from the trip out last Thursday, so I am trying to cut down my activity to below the current aimed-for five minutes in every hour.
We'll give that a few days and see if I recover.

Either which way, it seems that not only am I lurching around the rooms in my house like a mummy inside a pyramid, but I should also be spending more time in my sarcophagus.

To shift the image, If I don't improve in the next few days, it would, appear that the limbo bar has been lowered on me again.

Oh well,
Keep calm and carry on,
and we'll see.

I never did work out what panicking was supposed to achieve anyway.

"I've been working on the railroad..."

But not "...all the live-long day."

Much more trying to stay with the daily ration, doling out the five minute portions with miserly care.
Doubly so since I still haven't recovered from last Thursday's outing.
(That's firmly settling into a cautionary tale: "I wouldn't do that again, if I were you".)

I didn't manage more that three fives over three hours before discovering that was more than enough for me, this time.
Some weeds pulled, and two point indicators restored to functionality.

And the works train has worn the mainline shiny and clean.
We'll see what Monday gives, but I may have to opt for a couple of days of effectively bed-rest to restore my personal "par".
Not total bed-rest, as I have no-one to bring me food or bed-pans.
We'll burn that bridge when we cross it, or some such expression.

The garden is going to get whatever spare energy is available, while the weather holds.  Not to make progress, just to reduce the backlog.
And it calms my mind.

Little increments of things done, put right can be seen.
And with a train on the track, heard.

Putting my health right, well that's a big job: it's hard to see progress,
and the right tools to do it may not even exist, yet.
Beyond noting the accepted good practice, I see not too much point on dwelling on that.
"She'll be right" or won't.

The granite moorland stream, mill lead and waterwheel will be right too, sooner or later.
But that will be a whole series of episodes: about twenty-four, given there's at least two hours of work involved.

Nibble, nibble, nibble.

It should end up roughly as it did here:

One day.

The Call of the Wild.

Dry, warm, weather at last.
And some definite joy at the prospect of attempting some remedial work in the garden, or jungle, as it is in places imitating most successfully.
(When did "jungle" go out of fashion, to be largely replaced by "rain forest"?  Did "Save the jungle" not test well with focus groups?  Paying close attention to words, and what people try to do with them overtly or covertly, is a hobby and a life skill but it's another one that has an energy cost.  Though not being alert to words and their nuances can carry a very real cost as well.  My brain wanders off on this sort of thing, given half a chance.)

Back to the garden, and it's very clear this is going to be a case of "beware temptation".
So much to do, and so much gentle pleasure to be had in making good each little piece of winter damage or plant encroachment.

The kitchen timer set to five minutes is becoming essential, as I can get far too absorbed in the task at hand.
And set to 55 minutes too, as the related temptation is to trim the fifty-five minute sessions "just a little bit".
(That's my current target for the activity/rest ratio in any given hour.)

My cool logical side knows that would be a bad idea, but that isn't the whole of me.  No, not civil war, just peaceful protest by the bit of me that is frustrated and wants to cut loose.
At least, so far.

I'm not even fully recovered from my trip out on Thursday, so I don't think days out will be a major feature of the summer.


Judging by how I feel this evening, that is, somewhat over-tired, three five minute sessions in the garden over three hours is the maximum I should be looking at, and I'm not talking about five minute sessions of frantic earth-moving.  This is moving slow and steady even with the time limit.  No racing.


One train is now running around the main line, though.
And lying on the grass just listening to the wheel clicks is very relaxing, as a passenger train curls round the foot to the now derelict Wheal Strange engine house.

Someday the sound and accompanying trains may return to the branch line.

We've just got to find it, first.

One job at a time.

And that gently nibbled at.

Pressing buttons experimentally...

...is far from always a good idea.

Arthur Dent: : I wonder what'll happen if I press this button.


Ford Prefect: Don't.


Arthur Dent: (presses it) Oh.


Ford Prefect:What happened?


Arthur Dent: A sign lit up saying "Please do not press this button again."

But the driving and waiting around of yesterday wasn't a random experiment, and it did get an important job done.

Thing is, I don't think I'd care to press that button again, in anything short of most decided need.
Today has been dire, and tomorrow's auguring pretty badly as well.
Pretty much as predicted.
Poor coordination, poor concentration, headache, marked muscle pains in places I didn't know I had muscles, and zero stamina.

That's only recorded as zero stamina because I don't know how to notate negative stamina, even having experienced it: a sort of lower ground state of muscular and mental inertia that has to be overcome before any movement even starts.
Distinct from but co-present with the intellectual awareness of any impending movement that "this is going to hurt."

Let's step on this before it becomes too much of a whinge.
I did the crime, I'll do the time.
I just couldn't see a better option.
Knowing how bad a move this is proving, I'll have to work something out further ahead, next time.

"Work something out"
Extra effort called for, again, just when the resources to engage in such are reduced.
Catch 27?
But a range of "little jobs" loom larger when the scale of "significant effort" changes,  and also when mobility becomes more difficult.
Popping out for an haircut?
Putting a load of washing on and hanging it out to dry.
(forget ironing: that went by the board  some time back, in the early days of flotsam and jetsam.)

The 200 yards  each way to the village shop is not walkable. I don't think it would be were it on the level, which it decidedly is not.
Hence the car, but even so it's not a "on a whim" trip.  That's a whole morning spent, If I do that.  About once a month, currently.

My realm is my house and not even currently the whole of my garden.
Anything beyond that is "abroad".

With better weather forecast, the garden will be demanding more of those precious five minute shifts.
But not a full ration tomorrow, or Sunday, in all probability.
Still some debt to pay off from Thursday.

Let's see some more steady pacing.  
And the avoidance of reckless spending.

Breaking The Rules.

Granny Weatherwax: "When you break a rule, break it good 'n' hard."
(Even that one?)

My little hatchback was due for it's first MOT today, and service, and two new front tires.  (Meep!)

A look in the service book was interesting.
First year, 6,000 miles,
Second year, 6,000 miles.
This last year: 1,400.  And most of that early on.

I'm not ready to give up driving yet, since I can't walk the 200yds each way to the village shop.  So that's about a once a month run, as is my local town, 8 miles each way.
I'll be surprised if I do over 300 miles in the coming year, only on trips I can't avoid.

But to keep the car up and running  and legal meant driving it 32 miles, sitting quietly for two or three hours and driving 32 miles back.
(I did ask if they would collect and deliver it, whatever the cost, but "throwing money at it"  while sometimes an option to solve problems, wasn't an option this time.)

This was way outside my "five minutes and then rest for fifty-fives" schedule.

But I did it, and was not troubled by the driving: within what I could  do, safely, which is a datum worth having.

But it is also most undoubtedly a case of "borrowing from tomorrow" and going into marked fatigue and energy debt.
I've budgeted for "losing" tomorrow and Saturday as far as doing anything useful or productive is concerned.  I expect to be pretty much like a puppet with cut strings.

Now we shall see whether I am being pessimistic, optimistic or realistic.  Any which way something will be learned.
Possibly "Don't do that again, even if you can.  It's not worth the cost."

We shall see.
Done it now.

Hmm.  Legs feeling like lead and jelly at the same time:
How can they *do* that?

"Because it's my birthday, and I wants it."

Nah, I'm not turning into Gollum, living a dark reclusive life, muttering endlessly over obsessions...
(Did someone mention model railways? Not an obsession, just an interest, honest.)

But it is my birthday.
It's been a quiet day, but I did get a Skype from my brother in New Zealand and a phone call from my mother.
I'm still a bit tired from my OT's visit on Monday* so I cancelled the dancing girls and the disco.

If you are only as old as you feel I've been up to 94 on a bad Monday morning.
I can still get down to about 8 on occasion.


Tomorrow the five minute rule is going to get markedly broken, of necessity.
I'm budgeting on feeling pretty awful on Friday and Saturday as payback.
We shall see, note and report.
A once-a-year thing I've not found a low energy way to work-around, even with the "throw money at it" option in play.

Anyway, apart from Dr Pangloss did any one *else* ever say the world was just perfect?



*One hour, not stressful, spent talking: two days to recover.
On more pointer to the reserves, or absence thereof, that I'm working with.

"Keep Calm and Carry On"

That's become so popular an expression (with variations and parodies) that it may be heading for cliché status in record time, if it does not quickly fade back into obscurity.
Either are possible in this frantic modern world.

Frantic and fast-paced, however, doesn't suit CSF or a lifestyle aimed at managing it.
Something more steady is a better match even if that isn't what the mainstream of society seems to be, and approve of, and sell.


With the exception of Cadbury's Caramel, perhaps.

(Unfortunately too sweet and sticky for my taste).


But I'm used to being outside the mainstream way of doing things.  Especially in regard to speed, and noise, and bling...


The Asperger brain wiring and experience has actually come in rather handy, here.
Excitement costs energy.  Rage costs energy.  
Worry costs energy.  Speed costs energy.


I've always preferred placid and considered anyway.
And never quite understood what screaming and panicking in a crisis or disaster was supposed to achieve.
(Yes, I've been close enough to such to know it's not just an intellectual leaning of mine.)

I'll return to a favourite cartoonist, Bruce Bairnsfather, who illustrated "Keep calm and carry on" very, very well before it was ever put into a poster.

"Steady, lads, steady..." whatever is going on.

Well, trying for that, at least.   

Under Review.

Firstly, that fifteen minutes in three hours in the garden.
My body is telling me today that that was a bit too much.
Just a few extra weariness markers, and a touch of the "puppet with cut strings" effect.
Noted, for pacing, should another dry day appear in the next century.
(It's back to wind and rain again.)

Secondly a visit from my occupational therapist who, having quizzed me extensively seems pretty pleased, at least with my understanding of the condition and what we are trying to do to manage it.
"Progress" still lies in improving managing pacing and finding the sustainable baseline.
"9% living", at five minutes (mild) activity to fifty-five minutes (almost total) rest seems to be near the mark, but if anything it may have to be tweaked down to four rather than up to six or seven minute of activity, given the symptoms over the review period.

But I'm still learning, and finding where the flexibility lies, and also the firm boundaries.

"Wake me up every 15th of September"
No, not that drastic, yet.

But if thinking of any future plans beyond getting through each day dodging the potential frustration and depression, some considerable re-scaling is going to be required.
"If it takes one man a day to pull 24 weeds and the weeds are multiplying at a rate of...
...how long before he is fatally attacked by triffids?"

"No battle plan survives contact with the enemy"

(As popularly reduced from a saying of Helmuth von Moltke the Elder).

Well the weather did not quite cooperate, and neither did the CFS, but the day was not failure or disaster.

Demonstrated: that fifteen minutes of steady-paced gardening, in three five-minute sessions over three hours can achieve a significant difference to my garden.
Also demonstrated: While not pushing hard at the limits of my stamina, doing that every day would not be wise, even given good weather.  Let's aim for every other day.
Even with my visiting gardener's assistance this remains a "sinking slowly" situation, but that is better than the garden and the railway sinking quickly into wilderness.
Come the winter, if the weeds stop growing and I don't stop brief forays to pull weeds, the campaign will turn in my favour.  A long game, but at least I'm not, yet, having to resort to a literal "scorched earth" policy.

I've also had a little success examining the borders of inactivity.
Sometimes total passivity is required, even beyond merely paying attention to the radio (speech or music).
 But sometimes very quiet, very low impact distraction activities serve well.  A new marble solitaire puzzle seems to hit the spot, as long as concentration and calculation is not ramped up to chess-playing levels.
Similarly, restoring broken toy train locomotives, provided things are taken slowly and go well.
At the first sign of fatigue or frustration, walk away.
Or, more precisely, roll over and fall asleep, both these activities being pursued principally in the horizontal position.

So, in addition to the dead weeds, three rusty locomotive chassis, each over over thirty years old, have been restored to life.
In a manner reminiscent of Dr Frankenstein, perhaps, but such is my wont.
And precision, and perfection, eat energy.

Some earlier engines "risen from the grave", with much swapping and hacking of body parts:

Their own mothers' wouldn't recognise them.

So little done, but some little done.

"Get your Priorities Straight!"

A favourite saying of my dad's, that, when I was growing up, especially into my teenage years.
"Get your priorities straight" meant, of course, in perfect alignment with his.  It never really occurred to him that any legitimate set of priorities might exist which didn't match his, detail for detail.

It wasn't until I was 48 that I discovered why some of my priorities were such a mismatch for so many of those around me.  Even when I was trying to match theirs and "fit in".
A good solid case of Asperger's does come with seeing the world differently, and carries inevitably a peculiar perspective (mainly old sense peculiar, seen from the inside, mainly new sense peculiar, seen from the outside.)
As a friend at work pushed in my direction, many years ago:

Some distinct variation in priorities and preferences, too.
(This "fashion" thing: I never did understand it at all well until I had it explained by an evolutionary biologist.  To me fashion is largely a verb.  It means, for example, to fix several pieces of wood together with nails.  To fashion.)

And this before the CFS got thrown into the mix, distinctly changing the rules of the game and making some quite firm demands concerning priorities as well.

A quick Google for a few key words reveals...

My daughter is 15 and she usually takes about 3-4 hrs to get ready
 takes me 5 hours to get ready
 it takes me about 3 hours to decide what to wear
it takes 4hours to get ready 
I can never get ready under 4 hours
“It takes meat least an hour to do my make-up "


This is not my world, solar system or universe,
and I suspect if any of these individuals became affected by CSF they would face some stark priority choices.

I have to decide whether getting washed at all, or getting dressed at all, give a return on the investment required.
But tomorrow, the forecast is for a dry day, perhaps the first in a fortnight.
And I am going to make the garden a priority (no, not in the nude) while keeping to five minutes on fifty-five off pattern, and only giving up any of the five minute sessions to absolute priorities.
Because I can so choose and I do.
And also to set a benchmark for  what a new-style day in the garden can accomplish, be it little or much.

My priorities.
Straight for me,
for now.
However peculiar.

The Sounds of Silence meet Fagin

One of the things my occupational therapist left with me was a CD explaining relaxation exercises, to help getting more rest and stress reduction.

I've never been good at things in this area.  Getting my brain to stop and be quiet  is incredibly difficult.  I rely on thinking so much to cover for some of the areas where other people can operate more on instinct or reflex, and in social settings by picking up cues and clues I'm almost blind to.  After so many years locked to "on", anything near "off" is hard to achieve.
Years ago a clinical psychologist tried to get me to learn to juggle, just to try and set aside my forebrain processing, which is too slow for juggling.
Yes it is.  And I can't juggle.  I think about it too much.
I lost that one.

But given I accept the need to get the best rest, spend the least energy...   The attempt must be made, and again with that oxymoronic "trying but not by effort" which CFS seems regularly to demand.
This is fighting without fighting back.

So, lie down relax and follow the CD's orders.  OK, gentle leading.

Ah.  We start with silence.  Hiccup.
I've had tinnitus for 25 years.  I've coped with it.
But when the ME developed, the tinnitus changed in nature.  It's no longer a single high-pitched note.  Now it comes with added clicks and whistles.  And about three times the volume.


It's a tricky one, when it comes to getting rest.
No silence any more.   
BBC Radio 4 or the BBC World Service in the small hours does as well as anything I have tried, but it doesn't really serve as background for attempted mental relaxation.   And for white noise to work it has to be so loud it's intrusive in its own right.


Compared to the alien world I have become reasonably familiar with by observing, and by thinking hard, I'm finding this is a markedly alien territory.  Mental relaxation for me would be letting my mind into "cruise" or "play" mode, not an "off" one, or anything near it.  
And it can get into some very strange states and places if left to its own devices.


Nothing much to do, it appears, but echo Fagin:
"I think I'd better think it out again."


Anyone good at tangled knots?
In a foreign language?

Just Another Day.

They can't all be remarkable.
A load of washing done, and a wash and shave.
Five minutes working on a model railway loco.

Events, not exactly massive on any scale.  But they mark today.
A day got through without despair, and without frustration winning.
It is a defensive battle for now.
I wonder what will mark tomorrow?

Realising I am more fatigued even than I had previously thought, I still chafe under the idea of *not* doing things.
There is satisfaction in accomplishment, and in things put right.
And something remaining of "I am what I do".

But what is most needful to do now is actively(!?) seek out rest and relaxation.  It does not come easily, but I may be learning

"Your duty, soldier, is to keep still and rest."
"But I'd rather charge the enemy with a bayonet: it's more soldierly"
"Nothing unsoldierly about obeying orders, and yours are to pace yourself and get more rest.
Now lie down and soldier."


Robert Ludlum's Jason Bourne: "Sleep is a weapon."

♞ Where did that come from?

A definite ♞ day, for some reason or none.

Five minutes in the garden, five minutes attending to a load of washing, and a bit of time here,
For the rest, horizontal was calling, loudly.
And nothing of excess in yesterday's activity, using "excess" in it's purely CFS sense of :
"anything over the miserly ration which experience has shown is usually sustainable without marked reaction."

Either an odd kick, or the limo bar has been lowered again. We shall see.

"Which way I stagger is exhaustion, myself am exhausted;
And in the lowest deep a lower deep,
Still threatening to engulf me opens wide,
To which the fatigue I suffer seems energetic."

With extreme apologies to John Milton.

Asperger's at work, or at play.

Today is not the best of days.
The main difficulty with the "summoned by bells" routine has been rousing myself for the five minutes of activity every hour.  But there were things that needed doing in those brief periods: accepting the week's groceries from the deliver van, for one thing.  But only the frozen stuff get put away during the same slot: 55 minutes break before attempting to move items from the box on the worktop to their proper locations.  And definite need for rest after.
Accepting groceries = two hour task.

And just as an aside, how can legs feel like lead and jelly at the same time?

The Chronic Fatigue is what it is... it is certainly is overshadowing issues with Asperger's, currently, but an almost true saying (as he admits) of Tony Attwood's is that to cure Asperger's you just have to let the individual be alone in their room... they are then perfectly happy and functional.  
Even having to handle the CFS, this remains pretty true.  
So much hangs on this "rest of the world". Not least its expectations and demands, stated or unstated.
Time alone without social demands... 

Ha!  It's actually a give-away that first categorise social contact as a demand, rather than a resource or a need.  Demanding it is, even if the particular social contact is something I actually find fun, or want, it's still draining, tiring.  Even with best friends.


... back on track: time without social contact I can handle better than many, so it's not throwing me into depression as it might other people.   The consultant was quite concerned about that until reassured.




Similarly on another area which may be showing difference.

As far as I can research it (given effort limits), a range of estimates for getting better from CFS would mean I can expect another 2-4 years for me, if I'm anywhere near average.  It could be more.
And I've *at least* a 40% chance of not getting completely better.

No, I don't find that depressing.  I like to know, at least approximately, what the situation *really* is.

I find people building unrealistic castles of hope on unlikely statistics or none worrying and almost incomprehensible.  On of those blindspots where I can't see how the trick is done, or why it is.
(another would be "how to be part of a crowd")

That does appear to be my Asperger's in play. Or at work.

Size things up and live with them.  Or change them if sizing up that option reveals a more attractive and  viable possibility.
Cursing cruel fates achieves little.  And eats up precious energy in any case.

"...For Whom The Bell Tolls..."

John Donne.

Under the new regime it tolls for me.

I suspect I may come to hate that little kitchen timer, even if its iron rule is aimed at doing me good.
This may qualify it for it honorary admission to the guild of personal trainers.

It's too soon to tell how onerous 9% living is going to be: today was a day when I could miss washing and go for lazy dressing.
(Sorry if that's "too much information".)
I won't be able to do that every day, and that's an hour or more of the daily ration accounted for, in such basics.

The ease, almost eagerness, with which I collapsed at the rest periods just confirms what I knew: I am way beyond just "tired".  "Fatigue" is where rest does not immediately restore either energy or stamina.
Boredom while on enforced rest periods isn't an issue yet; I'm mostly quickly out of it: asleep or nearly so.
What will happen in a couple of weeks or months remains to be seen.
Will I have to fight myself to rest I can imagine my brain, at least, getting fractious.  And there is so much I want to do.

The remaining question to be settled smacks of school days:
is the bell the end of a lesson, and how long do you have to get to the next one?
Do I get preparation time?  An allowance to "settle down"?

One thing is for certain: there won't be any issues about "running in the corridors" any more as my current gaits are creep, shuffle, lurch and amble - the last being my top gear on a good day. 

Regime change. Or perhaps a coup.

Having been invaded, if only by the nicest and very well informed of occupational therapists, and with my permission to boot, I'm currently operating under a new set of orders.
Or call it an austerity energy budget.
Or  five-minute plan (no, not a five-year one, thank goodness.)

The objective: to balance my energy books and avoid borrowing from the future at punitive rates of interest (7%, nothing.  We are talking 400% and much, much more.)

OK.  It's quite simple and it goes like this...  for any hour, five minutes of activity should be followed by 55 minutes of inactivity.
Activity: anything that causes fatigue.
Inactivity: anything that doesn't.

But since getting dressed, getting washed, having breakfast, checking e-mails all fall into the first category (yes, each demanding a significant commitment of effort and energy, given what the total availability looks like), getting ready to face the day is looking like a three-hour process at least.
Unless five minutes and its entailed fifty-five is saved by ditching dressing, or washing...
One or both may be the best call on days I'm not expecting visitors.
But they will count as an activity too, and come under the five-minute rule, in principle.   That could be interesting.  It's a good job I don't get many.
My lady OT was here for over an hour on Friday, and the effects were clear through to Saturday at least.  I don't have much doubt I need to cut my activity down to about the level she's describing.
It's going to be interesting to see if I can prevent my brain imploding from sheer boredom.

But "inactive = does not cause fatigue" may allow a few odd things in apart from being asleep and listening to the radio.  I have a very old and very slow computer game that's going to help: it provides just the right distraction for my brain to stop it thinking about anything else  without stressing it.  Given that I can't get my brain to stop thinking that's going to be handy, thought it's not something to do for hours and hours.


And then, the trains.  I now have a little kitchen timer and I did couple of trials today.  Five minutes lets me clear weeds from between six inches and a yard of track, depending on the level of rain forest encroachment.


I have not as yet invested five minutes (that is, an hour) of calculation to work out how long it will take to clear the line at that rate.  Not given how fast the weeds are growing.


And I may have to work out (bang goes another 5+55) how to write shorter faster blog pieces.  
Or cheat a bit.  Or spin that as being "flexible".


It's going to be interesting.
And to think I thought I was living a cut-down life already.
"You ain't seen nothing, yet."

"Once I built a railroad, I made it run..."

I've certainly built ten of them, at least, in a range of sizes and scales,
even if I don't count the ones that never got finished for a whole raft of reasons.
(Counting those in would at least double the number.  Long stories, most, and not for here.)  


"Once I built a railroad, now it's done..."
Not the great depression wiping out my trains, nor the CFS, quite, but it has has markedly affected their construction, running and exhibition.
(N.B.  It has not "impacted" on them: a vile modern trend.)
A strategy and a lifestyle adjustment are both going to be required.

I was 18 months months ago, well before I was diagnosed, that I realised I was going to have to give up taking my exhibition layout out to shows...
Threefathom Quay now lies dormant (but ready to spring to life.)

The public drove the trains.

Threefathom Quay was supposed to be a temporary replacement for St Torpid's Creek, which after 14 years on the exhibition circuit was due for a rebuild into a fresher and improved version.  That's decidedly on hold.

Neptune pulling the seaside excursion across St Torpid's Creek.

Based on the cartoons of Rowland Emett.

And there definitely won't be a new window display for Halloween this year.  Last year's Dracula line was a make-do and mend itself, and will have to do again.  (A picture or two in season, I think)

Then there's the garden.

Moss captures the branch line

David Attenborough voice: ".. and so we see how, despite the heavy hand of human industry, given half a chance nature will reclaim its own..."

Definitely leaves on the line.

No, all is not lost there, and while with CFS it is very much a matter of selecting which activities to take on, and finding what pace and duration of activity is sustainable, nature is not going to win against the Wheal Strange Light Railway.

Five minutes of activity in the hour, the current approved ration.

Including for things such as getting dressed (if I do) or washed (if I do)

Enough, if I set it as priority, for a linesman to start cutting back the excess growth.   A very little at a time.

Because handling the CFS has to remain the top priority.

But the trains will return.  Because with CFS, there has to be some fun and some achievement, even if re-scaled to match current abilities.

The works train waits as No. 5 with passengers passes on the embankment.

Before I forget...

...having mentioned a couple of topics in my last post, I think I'd better cover them before that datum vanishes from my brain.

The slightly quirky features of attention and memory associated with CFS can wait until another time, if that doesn't get forgotten.
It's very likely to remind me, the next time I get the milk out of the fridge and put it away again before I've used it.

Books.
I'm one of those people who might just be found dead under a collapsed stack of books.  From a very young age they have been my most reliable companions (less incomprehensible than human beings, and Asperger's syndrome wasn't a possible diagnosis when I was young, to even begin to explain that.)
I have a valued Sandra Boynton mug expressing just that:

"A Book Is A Friend"

I have a few books that happen to be valuable, quite a selection of seriously odd books and a fair number of favourites that have been re-read to destruction and been replaced. 

CFS has almost totally put a stop to my relationship with my books.  It is, for me, almost the worst thing about the condition.   And to rub it in, with CFS the art of relaxing and resting is important: that's exactly where I would normally have turned to a book.

It's not my eyesight that's gone, exactly.  The eyes have sharp focus with good coordination.  As a former optometrist  I can assess these things.  But after only a few paragraphs, even if I'm relatively fresh (for me, now) when I start reading, something further back in mental processing starts screaming that it's had enough,  Words seen clearly are just not being absorbed.  Weird.

So my books are, for now, largely decorative features.

From "Scalded to Death by the Steam" to "The Defence of Duffer's Drift", "The Island of Sodor" to "Truth is Stranger Than it Used to Be."

I miss them, even if they haven't quite gone away.

But reading is too costly and painful on this energy budget.

"...the tale of the Stanley knife and the French motorway" pre-dates my CFS by years.  Probably.  

One run-up to Christmas, a good number of years ago, I was tired and stressed.

Work was not easy, and I was coming home from it not wanting to do much else except rest to be ready to face the next day.

But this evening a parcel had arrived for me, containing some unusual model railway bits and pieces, needed for a competition I was entering.

With a sudden fresh spark of enthusiasm I started to work customising  them.  With a sharp knife.

Now, If I'd been a little more alert I might have thought "now is not a good time, not when I'm this tired."  Or been somewhat more aware of the risks.  But as it happened the blade broke on me, the knife jumped sideways and put a nice deep cut in the heel of my left hand.  

Messy, a bit painful and needing a trip to hospital to get stitches.  I have a distinct scar to this day.

Not exactly front page news.

It was just a prequel.  Can you spot the key factors?  I didn't until afterwards, which is rather the point. 

A few days later I was due to drive to France to spend Christmas with my parents.  I was looking forward to the break, but not to the drive.

But as I certainly didn't like the idea of telling my parents that I was too tired to make the trip, I told myself I'd be OK, and that anyway I'd be careful.  Oh yes.

So, heading due south on a French motorway, I didn't actually fall asleep at the wheel, but I made three small but bad decisions in a row (they always add up in these circumstances, never cancel out...)

which left me bouncing the car off the central reservation at 75 mph.  I caught the skid and didn't roll the car or it would have been awkward.  Or quite possibly fatal.

The point?  And why I remember this pair so well apart from the scar?

Lesson to me:

"You make bad judgements and decisions when you are tired. 

And one of the most critical and dangerous of wrong calls is not realising or correctly assessing just how tired you really are.

Until you get you faced rubbed in it."

Which is something to try not to forget, with CFS.

Lest it or the world bite back.

However also remember that, whatever you do, some days things wouldn't go right even if you paid them:

"Reserves?" "None."

From the film "The Battle of Britain"

Air Vice Marshal Keith Park: [during the raids on September 15th] Is everything up? 
Wing Cmdr. Willoughby: The lot, Sir. 
Air Vice Marshal Keith Park: Reserves? 
Wing Cmdr. Willoughby: None. 
Air Vice Marshal Keith Park: That's what I've just told the Prime Minister. 

It's my oddly-wired brain: it pulls references, associations and connections from all over the place. From Herodotus to Heinlein.. I live with over a thousand books which I now can't read, but I'm not going there today.

It's more on having no reserves.

I was somewhere in the coping zone today, more or less, when I just got proof, as if I needed it, that I'm running close to the edge. Where tiny things can make a significant difference.

I got an E-mail notice that I'd won something on eBay, and could I pay for it.
Excellent, almost no competition, nice and cheap.
However, I hadn't noticed what I usually check for and thought I had: this foreign seller doesn't take Paypal.
I will need to do a more complex bank transfer.
Oh well, I needed to set up online banking with my bank anyway, since getting in to the branch is now very difficult.

Fifteen minutes later and the online forms have finally stopped fighting me and being illogical,
(to my mind, with Asperger's and the CFS fatigue encroaching, both)
but I need to security check on the phone to get it running ... more "press I for" etc. to get my head round and react to at adequate speed.
Which gets me to a live operator who sets things up, and tells me it will take three days for my posted password to reach me. Not a safe bet to keep my seller happy.
I need to send this transfer some other way, then.

Ten to fifteen minutes with another firm, reading very slowly and carefully, by now, to make things make sense.
And me, starting with no reserves?
Well I'm solidly in the red in energy terms though fortunately not quite in financial ones.

I'll be paying for this tomorrow and probably Friday too with extra pain and fatigue
That's from having nothing spare, to cope with the unexpected.
None of which had better happen in the next three days.
By order.

Not a big disaster.  Hardly a pint of spilt milk, but it comes with a fair old price, nowadays.
All because of a unlucky little slip, and not reading an eBay page in a foreign language as carefully as I could have done at another time.


But then, that's when another stray quotation surfaces and finds a place.  
From Alastair MacLean's "Force Ten From Navarone"

Andrea Stavros: "Luck deserts tired men".

Which could lead tidily to the tale of the Stanley knife and the French motorway, but that is also for another day as I'm tired and it's more than time to start giving in to the payback.  

Definitely no reserves.

Or at least not ones I want to call on.

"For the rain it raineth every day"

"When that I was and a little tiny boy,

    With hey, ho, the wind and the rain,

A foolish thing was but a toy,

    For the rain it raineth every day."  

And it has been raining effectively every day, with weeks of it to come by all the forecasts.
So, lots of literal days with rain in them which are probably more depressing for Cornish tourists, bar surfers, than for me.  As long as the roof does what it is supposed to, the literal rain is not much of a bother.
 
Metaphorical rain, now that's something else that raineth every day with CFS/ME.  The pains, the muscle weakness, the periods of brain fog,  the lapses of concentration and coordination,  the frustration at fatigue and inability, the discipline of careful pacing: spooning out tiny portions of energy and activity, and choosing what need is going to get the meagre ration and what desired thing is going to get none.

Finding a roof that shelters from that, now there's a challenge.
(Remembering that not much energy or effort must be put into meeting this challenge, as it's in short supply.  Catch 22 or nearby number.  If I had lots of energy to tackle the problem I wouldn't have it in the first place.)

Given time, probably years, there is a reasonable chance of recovery.  But not a certain hope, and unreliable hope can be a dangerous thing if counted on, or trusted overmuch.
I've had hope turn to dust on me before, in different contexts; let's not place too much weight there.

What takes some sting out of the rain is staying clear of any sense of guilt, or "why me" or "it's not fair" etc.  Stuff just happens, and there's no rule at all that it has to be fair.  A quick look up and away from one's own navel gives plenty of evidence for lack of fairness well spread around, and lack of unique grounds for "woe is me!"

Anything else?   A good measure of acceptance, quiet resignedness if you must, works for me and it has lasted so far.  No guarantees.
"You play the ball from where it lies" is a basic concept in golf.
Wishing it was somewhere better achieves little.  Especially as an illustration for life.  In golf you might be able to cheat.

And lastly back Shakespeare, in a way he probably never intended.  Finding those little bits of foolish fun to change the colour of a day, or even of an hour or a minute.
If one took this too seriously it would oppress even more.
Laughing at adversity, with black humour if necessary, is a long-standing  human resource.  Possibly a little out-of-fashion in these sensitive times, and the worse for it.

And there's always playing with toys.  Or kittens.  Or silly YouTube videos.  Or whatever provides a few moment's respite from the rain, to prove it isn't every day and all day.

"I'm going to hang out the washing..."

... no, not on the Seigfried Line, nor on any other line given the weather we've been having.
("The wettest June since records began" apparently, and I'm not going to argue against that based on personal experience.  It's been slug heaven for months.)

But the washing is done, and I too am washed.  What a thing to make worthy of a note, but down amongst the details we are.
I'm aware of the larger world (given a degree of insomnia common with CFS, and that speech radio provides the best background noise for handling my tinnitus, the BBC World Service actually keeps me very well briefed,) but interaction with it has to be limited.

I used to have a bigger world.  I've been round the world twice, walked the Milford Track and to the top of Ayer's Rock, Uluru. (I understand that's now discouraged.)  I've celebrated New Year in Toronto listening to live jazz outdoors at -10c, and had my model trains on show in Santa Clara, California (I'm not sure getting them through airport security would be so easy, these days: all those odd wires and switches on x-ray).  I've had dinner with friends on the Peak in Hong Kong...
No, this isn't a regret list.
But it may be an assertion that I'm no less of a person now that my universe has shrunk (barring the rare expedition of vital necessity, usually medical,) to about 700 sq. ft.

Plus the internet.
Thank goodness for the internet.
And the good people one can meet without ever leaving home.
No, that's not artificial or reduced contact, to me.

",,,Creeps in this petty pace..."

Creeping it is, rather, when the domestic round eats up much of the day, and it takes deliberate work and effort (Danger, Will Robinson, Danger!) to make one day feel at all different from the next.
Noting the variation of aches, pains, fatigues and disabilities really doesn't suffice, on its own, as there is always going to be some combination of these.  Add such to death and taxes, for CFS?

Today I did some washing, and to clear up a little energy reserve for that I didn't wash.  Or shave.
Yes, just that number of arm movements can count, and lifting wet clothes from the washing machine is best allowed for.

I wasn't expecting visitors, so no-one was offended, and with no washing to do I can wash tomorrow.

It is a petty-paced life: it can't be anything else really as the cost of a sudden burst of activity is crippling beyond the normal level of being crippled.
(Crippled and creeping belong together, by etymology... I don't object to the term, personally: it is accurate and descriptive.  Others may not be happy with it.)
That doesn't of necessity go to self-pity.  It's an observation. No more.
It does mean that victories, achievements and pleasures are going to be equally small-scale.
Except, perhaps, when measured by the scale of the rest of the day.

A few cryptic crossword clues cracked is an advance, a gain, a pleasure.

HIJKLMNO (5) :

Failure to ignite.

Not much risk of overdoing it today: my body really didn't want to get started.  Not much pain, and not too much muzziness lurking in the head, but limbs with a definite tinge of lead in them, and therefore the minimal daily rituals ate up most of the available energy.

With some sort of mental judo that was accepted and turned to advantage: if it's going to be one of those days I'm going to enjoy it.
A few pleasant  hours were spent mulling (not quite the same as perusing...) a collection of fragmentary model railway engines  (OK, toy trains) to see in what guise they could best be resurrected by me in my guise as the Dr Frankenstein of the model railway world.

Largely the subconscious at work, supplemented with one or two pieces of self-conversing at a conscious level.
"I" is much easier to type than to understand.

Low stress, low energy.
Even the ranting and bemoaning kept to a minimum.
A sort of no-score win.
(Thank you, Sir Terry Pratchett, for that expression.)

And so to the next round.  The sun will (probably) rise.
And I did so well today that tomorrow I'm going to be allowed to do it again.