Bumping along the bottom.

And occasionally the bottom gives way.

I'm still running on this new, lower, level of capacity and higher level of fatigue.  I'm curious about that, but not in a position to get excited about it.

I did get news from the ME services, today.  My occupational therapist should be able to come to see me in about three weeks...  or so.
(It'll all be over by Christmas?)

Still Halloween unfinished... that should be the priority for tomorrow, I think.
("Don't you just love it when a plan falls apart?" as Hannibal Smith never had to say in the A-Team.)  
Perhaps I'll light the stove in the kitchen to keep me there for more of the day.   That could work.    

I've not really got any longer term plans except the vague strategic aim of digging in and surviving, by whatever means come to hand.
I may need something more if I'm likely to be stacking up a couple more years of this at the least (rough estimate).  Something else to ponder during horizontal quiet times, but at first thought I'm not sure i have anything obvious to plan for.   Yes, that does need *more* thought.

I left the house today...

An expedition.  All the way to the village shop and back.  Wow.

"There and back again"
It takes a fair need to get me out of the house these days.
Not that I'm so attached to my place, or fear outside.  It's just that it takes so much energy, which I don't really have to spare.


However.  I made the other cardboard boxes today.  And addressed them.  The Christmas present for New Zealand could be finally be sent.
Only about a year behind the original schedule.   It was worth the excessive effort, as measured against my daily budget, to see that task done.  
If I've calculated correctly I'll just be a bit rough tomorrow, and back to whatever is currently counting for normal by Friday.
That's for noting, as it will feed into plans for going all the way (eight miles) to town somewhen between now and Christmas.  That's going to cost days...
Best done just after the week's food has arrived, I think, or I may not be in a state to order or unload the same.

These little molehills trying to act like mountains.

Sense of humour: intact.

Norse fatalism:  going strong
Buddhist detachment and calm: holding out so far.

And there's food in the cupboards, fuel in the garage, and water coming out of the taps (only when turned on).

I'm just taking a quick stock of resources since things aren't getting any better from the new low, and a bit of siege mentality maybe required.

Today I made a cardboard box.  Custom, to fit one-third of the goodies going off to New Zealand.   That was about it for accomplishments above and beyond daily necessities.
Not down to zero yet, but the "I did it"s are getting measured in very small increments, now.

And just looking at the Halloween train reminds me how much better I was twelve months ago, and how much I could do.
But I am determined not to give up on that, or on doing my part for Halloween.
And determination is a sort of short-term resource, though that has to be paid for several times over, if spent.

Which leaves one more.  I could always get angry.  Very good for a short burst of activity when all else has failed, but I suspect the price would come even higher than for cold, determined effort.
Let's leave that one in last reserve.  Very last reserve.

Zaphod Beeblebrox: "Ford, how many escape capsules are there?" 
Ford Prefect: "None." 
Zaphod: "Did you count  them? 
Ford: "Twice."

A distinct hiatus.

.. as one or two people have kindly contacted me to point out.

Yes, it has been the CFS interfering with me writing about my life with CFS.  In some respects an eloquent silence.

Again, I'm feeling like the bar has been lowered on me, once more.

My jelly legs have spread to my arms and my... torso
I'm also noticing a new form of vertigo sensation. Nothing too severe or debilitating, but it's a short jerky feeling as of a small boat in a chop, and most apparent when I'm sitting down. Odd.

Whatever I try, I don't seem to be able to get enough rest to quieten things down to my "normal" state of CFS as of few weeks ago. And this is with my low level of activities scaled back, and no wild (eg to ASDA) outside  expeditions.
Thinking is pretty clear, but in under five minutes with a craft-sized paint brush my hand begins to shake.  This is new, and not good.
(I'm finishing off the Christmas present for New Zealand two minutes at a time.  It's almost done, thank goodness.  I'm pretty happy with that.)

I need my occupational therapist back, but I have no date for that, as she's still ill! (no, not with CFS.)

Yes, I'm eating,
yes I'm up on vitamins,
yes, I've been getting a ration of sunshine.
My sleep is varying from no worse to slightly better than usual, so no obvious culprits anywhere there to deal with.

Given that, and no immediate action to take,
(My GP is aware, but it's not clear there is anything he can do.)
I'll just be crouching down in my foxhole for a while.

As for mood, it appears to be  holding out.  An odd sort of mix of Buddhist calm and Norse fatalism, I think.

I will try to be more regular in signalling that I'm still here.
Not that I'm likely to be going anywhere!

Trains, and coal.

The nearest thing I have to a guru, Mr Rowland Emett, (artist) was once asked what was the purpose, the final product, of his work.
"To bring the smallest smile to the eye of the beholder," he replied.

I can understand that.
From one of the last model railway exhibitions I was able to do:

Yes, I let the public drive the trains.   Children, as here, if they could get their dads to hand over the controllers.

And today I saw the grinning faces of two children at my kitchen window, looking at the little model railway I currently have there.
(I still need to get that Halloween one refurbished)
Their mum read the caption on my CFS Bunny model.

That's what it's all about as far as I'm concerned and that's going to last me several days, at least, outweighing any negative symptoms.  If I keep it in mind it could last me a lot longer.

Thus the trains (which do not run on coal).
The coal was me refilling two coal scuttles, one for each on my stoves.
Yes, do-able.  It hurt.  And I needed about two hour's rest to recover.

So it should have been one coal cuttle and rest, then the other.
Talk about "bitesize"!
A full scuttle, plus a dozen logs provides about a day's fuel for a stove.
But given I don't really get as far as having long periods in the kitchen or lounge in the mornings now, I don't think a stove will get lit until after lunch, and I don't normally have both on...

I think this could be manageable, if allowed for carefully.  It's just a matter of giving thought to something that previously hardly needed it.
Stocking and topping-up the stove was just something done "in passing" on the way to the next "proper" activity.   No longer.  Real activities in their own right .

"Do you have a hobby?" "Keeping the fire going."

Let's stay in this trench for a while.

Options of moving to another trench or digging a fresh one really don't appeal or seem practical.

Here I am and here I stay.   Let's not focus on aches, pains and fatigue... file that under "background", for now.  Take such as read.

(But apart from that, Mrs Lincoln, how did you enjoy the play?)

Today, other wise, then: my plans for the Christmas present for New Zealand have progressed well.  The time invested in experimenting with new materials has paid off in a much easier task.  (Rommel's dictum)

My brother has three children:  

So "My First Driving School" as above now has an extra radio control car on a third frequency and and extra crossover intersection and corner.  The only one in the world.

I should be able to get that posted of next week, one big job out of the way.  (I'd actually intended to give it *last* year, but my capacities were already slipping, throwing timetables off.)

Now, to get the Halloween train running.  It's passed all major checks.  it shouldn't take too many five-minute sessions to get the spiders and scorpions operational.

I still haven't worked out how to survive Halloween itself without taking a big hit... that's something for cogitation in the rest periods.  There's got to be a lazy way of doing this.

I'm not ducking out, though.  That's a policy decision.  

Anything serious on the horizon?   Waiting to hear from my doctor, Christmas has been settled as solitary...  No big moves or decisions to be made just for now.  Subject to surprises.  A holding action.

Definitely a bad feeling about this...

I'm not winning this little passive fight at the moment, trying to out-rest my fatigue.  I just don't seem to be able to rest enough to get back to where I was even a month ago.

Maybe it's a blip, or a bug that's that's giving me a bit of extra load, or subtracting a little more energy than usual.  My doctor's aware, and the county ME service, even though my own occupational therapist is out of action until early in November.

What else to do?  I don't see anything better than digging in, maybe cursing a little, or indulging in some black humour, and carrying on.

Ham and Jam time?
"Hold until relieved, hold until relieved."

That sounds about right.  I have food, water, heat...
(must check oil tank level)

Dig in and wait for Lord Lovat's Commando.
Or a phone call from my GP, at least.
A different sort of battle.  But real close-quarter fighting.