"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."