"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.