So here we are.

I woke up this morning and, just for a moment, thought I'd got away with it.  Then I moved.  The new data flooding in required an instant and major reappraisal of the situation.

It felt as though I was wearing a suit of armour.  Someone else's from the fit and comfort level.  Impressive levels of ache and fatigue.

By mid morning the issue of the armour not being a good fit was being sorted out with large hammers.  While I was still wearing it.

But I get the Halloween train running satisfactorily, just in time.  And Dracula rose from his coffin to order, reliably.

The only real change for this year was added UV light and UV paint highlights, though that was effective.

But the rain wasn't too severe, a good number of visitors came by, and I got some shrieks and some smiles.  Which as far as I'm concerned is what it's all about.

I ache, I'm exhausted and I'm grinning.   In an odd way, I think I now understand Olympic athletes a bit better.  Why for them it's  all "worth it."
I wonder if they would equally understand the odd reason why I've had that insight.


So here I am with a fraction over a month to get the Christmas train operational.  Christmas to be spent alone... I couldn't cope with company.   But I'll cope.

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."

"I've got a bad feeling about this"

Not a desperately bad feeling, but I'm aching more despite having done less in the last couple of days.  Has the bar been lowered on my again?

I'm aiming for a very quiet and inactive week (measured as against my usual quiet and inactive weeks!) and I'll see what results.

Observation from today records that running my stove in the lounge does take a very significant proportion of my day's activity ration, but in compensation it provides a very warm and comforting environment to crash out and fall asleep in.  Real flames and the Stirling engine "Heat Wave" fan on the stove-top circulating a nice gentle warm breeze.

Apart from that, and accepting the week's groceries, very little physically active happened today.  My mid is being kept from vegetating by occasional forays to support groups on the internet, and also, a new diversion, the feedback pages of the Times of India.  Some real culture shock and new perspectives on India, Asia and the rest of the world.  Stimulating without being very demanding on energy cost, I'm finding, so far.  A good move.
Anything that adds interest without too much drain is very welcome indeed.  I'd almost say refreshing, which it is for my mind, but nothing beats lying horizontal in quiet stillness for the whole of me.  This can involve not listening to music or Radio 4, such sort of drifting past, not really attended to.
It masks the tinnitus, somewhat: a positive effect, if not really what the composers or broadcasters were aiming for.
"Collateral benefit", perhaps.

Invisible vampire attack.

No doubt about it, I've been mugged by an invisible vampire.
A little concerning, really, not that there's much to be done about it.

For the last two days (hence a missing post from my planned daily reporting-in) keeping to my planned five minutes of activity in every hour has not been an option.   My body has been putting in quite firm requests for rather more rest, two to three hours at a stretch before admitting to the capability of doing any activity (without marked protest).
No obvious signs of an infection to bring this on, and I've not gone mad on activities, unless my memory has gone haywire too ("What's this half-built motorbike doing in my bedroom?" would be the sort of worrying clue, there.)

I've got to write a letter to my doctor (GP) anyway, tomorrow, so I'll bundle that all up and pass it on.  Writing a letter because neither of us wants to make the trip to see the other unless we really have to: he's incredibly busy and I'm incredibly fatigued.
I've not left the house for about three weeks now, and I don't plan on it, except that between now and Christmas I've got to make at least one trip to town and a couple to the local village shop.  The town trip is going to be a "cross off the next three days on the calendar" job.

Old theme... well, if I could arrange the world for my own personal benefit, boy would Angelina Jolie be surprised.  She hasn't been, so I therefore conclude I can't.

"And so to bed."
I'll be trying even more of that, and see if can find an improvement that way.

Put it away, you don't want to play with that...

Today I've been aching and weary, real "lead and jelly" legs.
So on my last couple of bit better days, even with what I thought was restraint, I was overdoing it.

Hmm.  Time to put that optimism away, as it seems a bit dangerous to play with for someone in my condition.  Turn on a bit more scepticism and doubt, to steer me away from the edge of doing too much, and having to pay for it.

While we're at it, it might be a good idea to return Hope to Pandora's box of all the woes and evils of the world.  It's always been a bit odd, just what it was doing there in the first place, unless the interpretation that it is not an evil or woe is actually mistaken.
Like optimism, it can definitely be dangerous if misplaced or trusted beyond reason.  Hope that turns to dust is seriously painful.

And personally I don't have a great need of hope.  I don't know if that's my autism or some Norse stoicism and fatalism creeping in.
Having a bit of hope is nice, and doubly so if it comes good.  I'm not quite in the Private Fraser mould with "Doomed, doomed, we're all doomed", but neither am I in denial and thinking that this situation I find myself in has to have a happy ending.   This is no fairy tale.

Never mind.  Back to my favourite Bairnsfather cartoon.  This is the 'ole I find myself in, with no better one to go to, or I would.   Situation resolved.

How about a brew-up?

I think I'll sleep on it.

I've a long history of poor sleep: it's common with Asperger's so this goes back well before my ME, but the interaction has come up for thought and action once more, in the last few days.

Trazadone and Mirtazapine have both been effective for me, in terms of knocking me out, but it's not uncommon for those on the autistic spectrum to have atypical reactions to medication, and both of those at my prescribed doses left me essentially non-functional for at least the next day, if not more.  Thoroughly doped.

A 1/4 of my Trazadone Rx turned out to be the titration, but I never did find a small enough Mirtazapine does to lose the unwanted effects.

I still use the Trazadone if I've had several poor nights, which applied over this weekend, to prompt this post.

It demonstrates that poor sleep is certainly not the key cause of CFS: "tired from lack of sleep" is way too simplistic.  Good sleep does not appear to reduce or eliminate any of the CFS symptoms, with the exception of "brainfog" (Or, lack of sleep alertness failure, which being similar in many respects would overlap nicely): same fatigue levels and poor stamina, same muscle aches and pains, etc.

What decent sleep does shift, however, is my ability to cope with my CFS.  The same level of symptoms don't "get to me" anything like as much.   More tolerance, less irritability.

That's worth having.

I shall think about and monitor sleep a bit more, now I've made myself aware, again, of what I've rather been missing out on.

A half-serious bit of me still thinks that two or three years of induced coma is what's needed.

"Sleep that knits up the raveled sleeve of care, the death of each day's life, sore labour's bath, balm of hurt minds, great nature's second course, chief nourisher in life's feast."

Step, step, step

CFS Bunny, advance two steps.
Dracula train, advance one step.

Grocery delivery stock up, two steps.
Stove now ready for winter, three steps: more than I planned, and I might have overdone it there, but one piece really didn't want to go back where it came from.

At an hour's rest for every five minutes activity, the day gets used up before very much happens, once meals and routing chores start getting counted.

A James Bond novel it isn't.
Oh well, I was never promised it would be.
I'd probably have preferred a Desmond Bagley, to an Ian Fleming, anyway.

There have been films with autistic central characters, but I'm having trouble seeing how one with CFS would work, and draw an audience.
Oh, of course, I forgot the Hollywood effect: facts and truth don't matter.  A character who is forever ignoring his limits and, having been heroic, collapsing into the arms of of the female lead, exhausted.

Sheesh, that's worse.  I'm sorry came up with the idea.
I half believe it, though, seeing what Hollywood has done with autism, and history...

Determining the correct dose... (For Sun 23rd)

With many medications, as well as a therapeutic dosage there is the distinct possibility of toxic overdosing.

More than once (understatement) I have been accused of thinking too much, essentially overdosing on thought.
But I'm having to do some thought on another possible variants of overdosing: on optimism and hope.
Now, I don't think there's much disagreement that these entities can be positive therapeutic tools in many circumstances.  And that a deficiency in one or both can in at least some situations promote depression, apathy and passivity.
No need to argue there, that much.

But what about overdoing it?
The immediate prompt was my condition on Sunday, when optimism on Saturday was not mixed with adequate caution, and so I ached, and could do little.  
Proposal: too much or ill-placed optimism can be harmful, even downright dangerous.
"Of course it'll take my weight"
"That gap's plenty big enough to get the car through."
or in my immediate case, "I feel fine: five minutes more won't hurt."

No point in undue pessimism, but finding the right dose, optimism  correctly titrated, is not a trivial problem.
I've not much in the way of spare resources, physically, to give much play in the matter and, with a distinct desire not to be too optimistic, I'm counting myself as a little brittle, mentally.  Not disastrously, but just to where I'm not betting on having a lot of spare resources there.

It feels a bit like a tightrope, but I think there's one side I'd rather fall off than the other.
Similarly with hope: too much, or wrongly placed, looks good right up to the point where it shatters.  And that's nasty.
Been there, done that, and so I've got more work to do on getting the right balance for hope, as well.
Though with my odd mind, I'm not convinced I need any, of a necessity.  Nice to have some, though.

Phineas Fogg and I...

...both saved a day by travelling around the world east to west.
In my case I  had two November 23rds, but the advantage was not that great as a fair proportion of the notional extra day was spent flying across the Pacific and queueing at LAX, Los Angeles international airport.

Today, however, I  have pretty much lost a day.
After a run of nights of poor sleep, common in Asperger's and CFS both,  I took one-quarter of a dose of the sleeping tablets I have been prescribed for such occasions.
I got the sleep, and woke up two hours later than I usually do, and have been completely doped up for the rest of the day.
I looked uncomprehendingly at the makings of breakfast, and managed to make two pieces of toast instead of my usual one.
Taking my morning meds was a major task.  It took me three goes to arrive at the correct total of pills (8) without worrying too much if that contained examples of all the types required.

And so very much back to bed.
I was asleep when my week's groceries arrived at noon, and was not roused by my doorbell, but fortunately I did respond to the driver calling my phone.

This has taken quite a while to type as I'm making a lot more errors, and I'm slower to  correct them, than is usual.
All from 7.5mg of Mirtazapine.
Effective, but I won't want to be doing that too often.
Finding a sleep-aid that is effective without laving me dead the next day remains something of a problem.

Mind struggling, now: bed is calling.
On a positive note, as the CFS goes, decidedly a restful day.
I always said being put in a coma for a couple of years might be the best move.

Another preja vu. For Friday 14th

A usage from Terry Pratchett?
"A sudden feeling that you are going to be here again in the future."

In this case preja and deja: I've overdone it, and it now feels as though I'm wearing a barbed wire shawl around my shoulders.
(I'm typing this with my elbows against my sides, and movement from there on down, only.)

The usual trap: feeling a bit better and, pushed by the so many things I want to do, doing a bit too much of the things that need doing.
and paying for it.

An unusual posture too, didn't help.  Just checking one of my two stoves  to make sure it was clean and sound for the winter: a bit more ash in the wrong places than I expected and a plate removable for cleaning that didn't want to budge.

As per usual with CFS, the warming bell alerting you that you have done enough didn't go off.  And with my Asperger's if I'm concentrating on one thing, I can so easily forget how long I've been doing it.

More discipline required with the little cooking timer.
I bet I'm going to tell myself that again in the future, too.

Wrong Planet Syndrome.

Wrong Planet Syndrome is sometimes used as an explanation and illustration of how people on the autistic spectrum can feel, surrounded by a massive majority of human beings who seen to be a rather different life-form, with peculiar priorities, values, customs, modes of speech and levels of emotion.
Measured, that is, from the thinking for the person with autism.
The majority, forming the local dominant social norm and perspective will measure things  differently, and if told often and strongly enough the autistic individual can soon cone to think there is something "wrong" about their being "different", and can come to see conformity to "normal" as the only proper objective.
(if only to avoid social ostracism and bullying...)

There are other ways of handling that, and understanding "normal", with its variety of meanings.  It can still make it difficult to see "here" as my home planet, to truly be "at home" and relaxed with the world around me.

And now, with CFS I am scoring on the "difference" meter  with a new range of non-standard symptoms and behaviours.  Oddly enough several of them hitting asocial or even antisocial markers, when measured by average cultural expectations.  Around here, anyway.

Be social, mix?  Talk a lot, join in and contribute?  Hold down a job?
Some quotes from a BBC have your say form, on benefit reform.

"let's face it the majority of people on benefits are total scroungers, out for when they can get and no intention of doing a days work in their lives.".

"Most people on benefits are lazy scum with no intention of making a positive contribution to society."

"Come on most of claimants can afford large 50 inch TVs and Sky"

"I do not pity those on benefits. How lucky are they?? Money paid out for you doing often very little."

Not perhaps the majority view, or even highly approved of by others, but another element of "my society" which adds to me feeling isolated and on the wrong planet.
Life on benefits is fun, and easy?
I'm definitely not on the same planet as anyone thinking that, but there are people out there who seeing me on their planet and not working, and now the latest thing of not being athletic, either, will quickly paint me as "lazy scrounger."

I'd do a strong line in re-education and paradigm-shifting, as I did with some ill-informed people with odd ideas lodged in their brains concerning autism.
Except with CFS the energy and focus to explain these things clearly and forcefully is so rarely available.
It's terribly sad to leave the uninformed, the badly informed, and the prejudiced folk wallowing in their ignorance, but what can you do?

Fighting one's corner is a very different game now.

The correct use of "anticipate."

As I fully and correctly expected, I have had an extra lot of fatigue and muscle ache to deal with today, due to my (very pleasant)time with visitors yesterday.

Absolutely no way to anticipate that, though.
No real way to intercept it, head it off, prevent it occurring, which is what anticipation is about, not just "seeing it coming".

When you see it coming but cannot anticipate it, that can be tough.
"For what we are about to receive... " was allegedly the blasphemous grace of some Royal Navy officers of the Napoleonic era, when sailing in towards enemy broadsides.

"I'm going to have to pay for this" is the classic knowledge of the person with CFS, engaged in excessive or overenthusiastic activity, and what constitutes excess varies from individual to individual, and can be very little indeed.
So, today: no model railway fun, not even five minutes, no housework or fragments of DIY.  I did five minutes of gardening as my gardener came to cut my grass.  That was possible too much.
An awful lot of lying still, not quite asleep, with aching limbs.

I can't quite guess for tomorrow, but it's time to receive my week's groceries again, so that's two hours of the day accounted for, right there.
It's supposed to be decent weather for a few days, so I may try lying on the newly cut grass, and for five minutes in every hour, roll towards the nearest dandelion or weed and attack it.

Ideally with a train running happily round the track providing a relaxing sound.
This idea may not survive contact with reality.
Let's just leave it pencilled in.

On not watching the Paralympics...

Well, not yet anyway.
I got as far as inspecting the available coverage, and noting some of the events I will want to watch, mainly the less-mainstream, if C4 actually cover them (the online availability appears as nothing, compared to what the BBC managed to deliver.)
But then the headache and dizziness set in and I was set for another essentially horizontal day, and television was not a preferred activity whatever was on.

Looking back, it's really not been a good week!
Never mind, no pressure, no records to break, and "personal bests" at the moment are more in the area of "coping", and maintaining good cheer in adverse conditions.
Without the shouting, flag-waving crowds for encouragement.

"Hold until relieved", as Major Howard's orders gave it.
I don't think they specified "and look happy while you're doing it."
That would have been a bit much, all things considered.

Tiny increments of ground gained?
A brown bear got a boilersuit, and I did use my marbles time-keeper correctly.
That really was about it.  Hmm.

Let's see if I can make a couple of engine driver's hats tomorrow.
Or some such tiny marker to prove the day actually happened.

Today my house was cleaned.

Except my bedroom.
I knew little about it since after welcoming my cleaner in I retired to said room and was dead to the world within about five minutes, only waking up some time after she had gone.

Not a lifestyle for a thrill-seeker, this.
No model railways work or DIY or gardening achieved today.
I'm pretty certain today actually happened...
...Yes, the kitchen is tidier.

And now the paralympics are starting.
There will be some events worth watching, and I admire the whole aim.
Just feeling a little left-behind, with nothing in the listings I could compete at.  Not even the Boccia, currently.

And while there is a plan for people to protest at ATOS being a sponsor of the paralympics, there is some very mixed irony in my Atos medical passing me 100% for for work while I'm absolutely incapable of getting there to protest the unfairness and idiocy of their procedures.

Bizarre.  Is there a sane world out there somewhere?

Tuesday 28th August. Missing in inaction.

This is starting to get silly.
I only just managed to get up, washed, dressed and rested in time to take delivery of the week's groceries and household stuff, ordered on-line and turning up at noon.
(without modern buying on-line I would have needed at least a part-time carer some time ago.)
Accepting the delivery and putting it away are separate five-minute activities (exception for the frozen stuff), needing, and it was needing, two more hours of rest.

And a bit more.
I am definitely going to push(!?) for maximum rest for the remainder of the week to see if I can't get the right side of this fatigue.

Nothing happened, then nothing happened again, and the two were so close together that they almost seemed one non-event.
Spike Milligan would have understood.

Are we nearly there. yet?

Better today, but still not quite back to the pretty reliable five minutes of activity in every hour, which was the norm at the beginning of this week.

But meanwhile, just some hints of movement, or life.
Mad life, some of it, but that's what helps keep me sane.
It could be dangerous to take this situation too seriously.


From yesterday: "and heresy or just possibly an abomination committed on a Sylvanian families rabbit."

Oh yes.  And pictures taken and and an e-mail discretely sent to find out just how much of an anathema I have created.

Working on a plan for a small window-display railway, and needing to do this more lazily if I was going to do it at all, it struck me that the size of figures I needed would fit quite well with the Sylvanian Families range, and having checked that used figures and indeed some battered and broken buildings were available very cheaply on eBay I have proceeded with this idea. It's not finished yet, progress being very slow for the obvious reasons.
However, and this is where I may have turned evil in the eyes of Sylvanian fans, I needed a couple of engine drivers and, having made an attempt, I cannot in fabric produce such dressed as I want.

I know my skills, however, and found another way.
Another however, however: doing a few google searches, I cannot find anyone else who has done what I just have, and I am now wondering if I have crossed the line and gone where no true Sylvanian families fan would ever go.
It's just that I thought some one other person, at least, would have done it first... ...or are plasticine clothes anathema?

No longer a naked rabbit, as acquired:

(I have just sent a discrete e-mail to the owner of a Sylvanian Families website, to gather an opinion.  I await a mob with torches.)

Having a quiet day.

Strictly by necessity, but still not such a bad thing.

Legs of jelly and lead, and a brain not that much better-placed: I was barely awake and functional enough to let my cleaner in.   I was asleep about ten minutes later, and didn't hear her leave.

Things done today, minimal.  A few postings to a support group, a checking of e-mails, and here.
Apart from aching, of course, when not asleep.  I'm not sure if that counts as something done.  It was certainly something happening.
(Not severe or agonizing, just "there".)
No TV watching, no gardening, no model railway work, no DIY, no Skype conversations, no paperwork or housework.

It's a significant price, for an hour or so with a visitor and some serious conversation.

Here's hoping I'll be "paid up" by tomorrow, so I can run a more normal(!?) five minutes  out of sixty activity pattern.
But no point in bemoaning or ranting if I can't: expensive luxuries, those.

And I'm most decidedly on a budget.

Service and M.O.T. For Me.

Or to be less cryptic, a good long visit from my occupational therapist.

She's happy with what I am trying to do, (and not to do) and the way I'm thinking about my condition, and about life with it.

("Life?  Don't talk to me about life. Hate it, ignore it, you can't like it.")

But it's still all about pacing, working on getting rest enough by quantity and quality, while also finding (without devoting excessive effort) enough acceptable activities and distractions to make life at least tolerable and help avoid a tailspin into hopeless despair and depression.

"You know you have CFS, when you can't even make it to the Paralympics as a spectator."
What would a suitable Paralympics event be for me and those like me?
Undressage?  (no, not stripping: the challenge of looking cool and dignified while wearing battered pyjamas or lounging outfits.)

So: so far, so good, nothing drastic to do except what I'm doing, and maybe a bit more of the same, keeping an even more careful track of when activity is eating into those five-minute slots.

On which, since the positive, helpful and necessary visit was that little bit over an hour long, I'm in debt for thirteen hours of pure rest.

That's not a practical thing to recoup, so I'm going to be significantly below *my* par tomorrow, and perhaps on Thursday too, even as I try to keep my activity very low to afford some compensation.

Such is the cost of a visitor.

Going by the book

Two fives spent on loading and unloading the washing machine,
two five minutes spent in the garden.
Two fives (actually stretched fives) trying to cut down my e-mail backlog.
Two fives working on a model railway locomotive.

An eight-hour working day, and a couple of hours in getting up and washed, and a couple more doing odd housework things such as the washing up.
And a couple of extra hours resting, because the 5/55 spit isn't quite holding up, especially with going outside.

"We're busy doing nothing working the whole day through, trying to find lots of things not to do...  "

Plenty of things not getting done, right enough.
But I don't think that will bring on the end of the world.
And anyway panicking takes so much effort.  It's really not worth it.