Saturday 29 December 2012

Review of the year.

It is looking as though this blog is not going to be daily, or anything like it, as initially planned, given teh current state of my ME/CFS.  While I have not given up on that idea yet, finding the energy and concentration, and having anything to write, is nothing like as easy as it was those few months ago.

We shall see.
However, nevertheless, notwithstanding...
My mood is good.  Surprisingly good.

Bolstered by a sense of humour still capable of feeding off the absurdity of it all, my subconscious mind seems to have absorbed my conscious conclusion concerning of the importance of staying a bit detached and avoiding despair, fear and panic.  
Keep Calm and Carry On, indeed.

The physical symptoms and limitations of my Chronic Fatigue Syndrome / ME have gradually become more severe.  Every time a benchmark activity has been repeated, such as a rare, brief, trip to town, I have been of worse performance or paid a larger consequence for making the effort.
"...dropping down the ladder rung by rung"?   

What activities are left to me are slowly needing be scaled back.  It's not obvious day-do-day, but thinking back in three-month chunks it is quite clear.  
I can have no real plans for next year.  It really is pretty much "hold until relieved."
(ham and jam, ham and jam?)

No panic, and if a better move or situation shows up, I'll go for it.
If not, I'll make the best approximation I can manage to snuggling down where I find myself.



Monday 17 December 2012

A whole two weeks, and more.

Or should that be "a state of abandonment"?

I keep looking at the shortcut button for the blog, and realising I just don't have the energy to produce anything worth recording or reading.

But it's not abandoned, and I want to get back to it... today, if this counts.
I made my final Christmas trip beyond the front door on Saturday: the last thing that had to be posted at the local village shop and post office. That left me *really* exhausted for the rest of Saturday, and Sunday.

I don't expect to leave the house again until some time in the New Year.  I have two Tesco deliveries coming before Christmas, so I'l be fine, or fine enough given the circumstances.
(Yes, very much the "better 'ole" principle.)

Having visitors staying would be disastrous.  I'd try too hard to interact when I should be crashed out resting.

The Christmas train (or loco) is running well.  More reliable in its adjusted version than previous outings.  Easier on the batteries too.

In the window there is a bit more distance between the cliffs.

At least six Santas still standing , at this point.

With added ceramic Christmas tree (with lights) in my kitchen window.

Job done.

Thursday 29 November 2012

A whole weak.

This is still not working well.  No, I'm not dangerously ill, and no, depression and low mood is not making any sort of comeback, but just the routine of getting through the day is leaving me so little spare that coming here to write is getting left behind (a couple of other internet support groups I find valuable are suffering similarly).  Rest, I always seem to need more rest.  Because my muscles get tired and ache.  Even just sitting.  Holding a magazine for more than a few minutes starts to pull on the biceps and forearms.

But I'm still here.  Still keeping going even if the world continues to shrink a little bit smaller.  And it's nearly Christmas. I must remember to have Christmas.
I will have a Christmas window.  Train is very nearly operational, problems nibbled at a few minutes at a time. Photos in due course.

OK.  Now let's see if I can't be a little more regular. Something happening in life to report might be good.  if other than dire events!

Thursday 22 November 2012

Not once a day, yet.

Still working on getting back up to daily posts.
Yesterday I made it to the local post office in order to send off a parcel of Christmas cards to my parents in France so they can fill them in and send them off to all their friends and contacts.
This sort of thing never used to be a job: I'd do it in passing while heading somewhere else.
Now it's laid me out, inactive for most of Wednesday and much of today.  A different scale of things.

Never mind... (If I starting minding this stuff I'd go completely doolally, so a policy decision was been made, some time ago.)

Meanwhile, I think that leaves just one more trip to the post office before Christmas.   The hiding in the bunker from the Christmas bombardment will start earlier than usual this year, is all.

The Christmas train will be ready.  On that I am determined.
A trivial objective, perhaps, but better than none at all.  
And quite big enough, looking at things from my current scale of disposable energy budget.

After that, we'll see.  Three or four bigger things drift immediately to mind, but I'm likely to need help with them all.  Inquiring after that may be the next project, in itself.

Tuesday 20 November 2012

But I've missed one, already.

I'm not sure what happened to Monday.  It was mostly horizontal, and and fatigue-laden, though I hadn't really done anything.

Certainly no progress on the Christmas train, or even anything as marginally active as watching TV.  Just a "routine maintenance day", then, though I at least kept up with incoming e-mails, so the backlog is no bigger.

Today includes the weekly highlight of having groceries delivered, and with the time being a little uncertain I will probably get ten minutes in the kitchen to work on Christmas, through being downstairs ready.

That'll be about it for today, I think!
Oh, apart from thinking: can't help but do  lot of that.   I've designed half-a dozen ingenious model railway layouts in my head, though of even one of them gets built I'll be a bit surprised.  
Getting one or more out onto the exhibition circuit would be an ambition: I can hold on to a ghost of that as being a bit this side of total fantasy given, say, five years.    I'd need to be at least that (reliably) fit, before I can think about getting back to working  with children and teenagers on the autistic spectrum.  Being able to manage my garden would be another benchmark.

Not this year.   "Dig in and hold on" is more the plan for the next few months.

Sunday 18 November 2012

It's alright, you haven't missed much.

Neither have I, it seems.
I'm having trouble realising it's has been a week since I posted anything, but so little has happened in terms of productive activity or events, and so much time spent horizontal and inactive I'm sure I've lost a day or two, somewhere, and I would have been stretched to find something distinctive to say about each day.

I think I will try a change of routine, and aim to put in a blog entry at the beginning of the day: I am usually functional, for some values of functional, at breakfast just as the first mug of coffee starts to hit the system (assuming I have not made it without coffee, or using cold water, or any of the other oh-so-possible CSF brainfog errors.)

To bring up to date: my Christmas will be alone as both parents have been cleared to travel to New Zealand, neither health scare being anything like as bad is it appeared.   This is undoubtedly the best option with things as they are.

I did manage a trip in to town on Tuesday, the one I knew was unavoidable.  I was losing so much energy trying to find a taxi company that could take my booking that I gave up and drove.
The driving was not the problem, even though I was beginning to ache coming back.  Walking just a few yards was, the discomfort building up rapidly.  But I am now fixed for not having to leave the house for months, if need be, though Wednesday and Thursday were pretty much "do nothing" days as a result.

Now for more rest, and I'm still waiting to hear from my occupational therapist...
No real plan for next week.  Catching up on some e-mails and forum postings would be good.  It's not exactly "conquer Everest", is it?   But reality is trumps so I shall have to see what is possible.

Sunday 11 November 2012

Still Here, But discovering new levels of tiredness.

A bit of me, sort of detached, observing the rest of me, is actually quite amused.
The rest of me is not frantically worried as the fatigue rather rules that out.  Frantic worry would take resources I haven't got.

Impressive.  Still waiting to hear from my occupational therapist, though I can't see what she will have to offer...  A bite from a radioactive spider?

What sent me to bed for effectively all of today was news from my dad that mum had suddenly been taken seriously (but as it turned out, briefly) ill: unconscious, Dr had trouble finding a pulse or blood pressure, but by the time the ambulance had got her half-way to hospital she had completely recovered, and the hospital checks found nothing...  That's good, at least, but from my end it showed all too well up how much energy emotions can eat up, and I have no reserves of energy to spare.  Fifteen minutes after the Skype conversation going horizontal was compulsory.

It wasn't too good realising, while lying there, that in case of needing to get to France quickly I couldn't work out a viable method, currently, and I'd need a wheelchair once I got there in any case, with havoc that effort would wreak.

I knew I wasn't too good this time last year, but this is pointing up a marked degree of change.

Hmm.  Reality being trumps, this once more is something to work with or around.
A teleporter for Christmas would be quite nice.    Unlikely.
I may have to settle for a new bean bag.   Or a foam floor so I can drop  anywhere?

Tuesday 6 November 2012

I see, I see.

In particular I've been seeing marginal hallucinations.

No panic: I've had them before though not with this frequency, and I know exactly what they are and what they mean.
Little ghost flickers at the edge of my vision means I am very, very tired.
I've only been there one or twice before: when backpacking, many years ago, and during a marked bout of lack of sleep when I had a chest infection and was coughing all night for several nights.   So having them now means the price for doing Halloween was even higher than I had expected.   Oh well.  
Nothing much to do now till Christmas, anyway, and it looks like "doing nothing much" is going to be the campaign objective!

Apart from these little ghostly companions, (who may be leaving me today: they seem to be less frequent) everything aches spectacularly. Who's a silly (or obstinate) boy, then?

If I don't get some improvement in the next couple of days, I'll have to go for *really* minimal activity for a few days to see if I can get inside the fatigue loop.  I've pencilled in a plan and timetable.  We'll see how things are by Thursday or Friday...    Not so much life in the fast lane, more life on the hard shoulder, with a puncture.

Mood holding up (touching on highly amused at my own absurd and pathetic state, at times, and if it works I ain't going to knock it just for now.)

And so to bed.

Thursday 1 November 2012

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.

Monday 29 October 2012

I Didn't Reckon On This

A level of fatigue where even keeping up a blog is a challenge requiring a distinct proportion of a day's concentration and energy.

As is just keeping a nice warming and relaxing fire going in a stove.
Or getting washed, or dressed.

Everything has to be on the ration
"There's a war on, you know!"
except collapsing to the horizontal,
and even there there's often a minor "police action" to get the brain to stay quiet.

No panic.
Apart from anything else  I've never worked out what actual use panic is.  Give me a reason and I might go there.   Until then it seems both pointless and exhausting.

Halloween should be OK to do, and I've already decided to take the reaction cost for that.  Bad behaviour as policy, once in a while.

The previous train is out of the window, and as a start the chapel, zombies and a UV light are in.  I'll finish that tomorrow, and rest up all Wednesday (no, not in a coffin) until it gets dark...

Thursday will see me lurching around like a half-decomposed zombie.
What the heck.

Friday 26 October 2012

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.

Wednesday 24 October 2012

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.

Monday 22 October 2012

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."

Friday 19 October 2012

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!

Monday 15 October 2012

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."

Saturday 13 October 2012

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.

Thursday 11 October 2012

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.

Tuesday 9 October 2012

"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.

Sunday 7 October 2012

The economics of fire

I am definitely worse than I was twelve months ago, and I've just had my nose rather rubbed in it.

It's the time of year when I'd usually be lighting up my multifuel stove at least for some evenings, and I've had a fair supply of logs and smokeless fuel delivered.
No question of going and getting them this year, for one thing, (and that adds a £20 delivery charge: one more little extra for being ill).

But I hadn't thought of in advance was the actual effort it takes to keep a real fire serviced and fed: my energy budget for a solid-fuel stove.
In previous years that would be part of a minimal, unnoticed energy spend.  Not now.

Ten minutes removing ash, stacking the day's logs and filling coal scuttle: that goes to two hours, including required rests.
And one hour's allowance every two hours for refuelling activity.
It looks like the fire is going to be for when I'm spending a day crashed out by the fire.  Not that that's unappealing.

(Darda toy cars, lower right, were part of what got me through last Christmas)

Time to check the oil-tank level: I'm going to be using more of the central heating than I usually do, this winter.

Money, money, money, must be funny...

Saturday 6 October 2012

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.

Friday 5 October 2012

For Thursday: Drop the Dead Donkey.

Or in this case, a daily blog post...  Still a bit jelly-legged from too much optimism based activity, a good proportion of my winter fuel arrived today: bags of Maxibrite ovals and nets of logs. The delivery man was very helpful but getting them stowed away took me well over my planned energy budget.

Two years ago I went a fetched them and loaded and unloaded my car without thinking about it.  Last year I spread the trips out and got help with the loading, and unloaded in stages.
This year, there was no question of fetching supplies myself:
"Bring me pine logs hither" it was.  With a delivery charge.
One little extra cost that this illness brings.
As far as the flesh and wine goes, Tesco supply the necessary, though I rarely drink alcohol.

If I ever get too fatigue affected to do my weekly on-line shop it will really be time to ring the alarm bell.

So, other activities sketched in for Thursday did not happen, being replaced by horizontal non-activities.  This to include the non-tapping-in of a blog post.
This is going to keep happening when there is just no spare capacity to match to unexpected demands.

Wednesday 3 October 2012

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?

Tuesday 2 October 2012

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."

Monday 1 October 2012

A nice, quiet, day.

Or is that more accurate without the commas?

A load of washing done,
and bedclothes changed (in one day, if three sessions),
and experimentation proved that my lazy idea for working on the Christmas present for New Zealand was extremely sound (the right material, one I've not used before).
I said a couple of things useful and a couple of things amusing in my  on-line support groups, judging by the responses.

That was a day's full, basically.
Feeling quite good, to be honest, I went for a deliberate measure of "don't push it", except I may have overdone the wielding of a Stanley knife.  The state of my hands and shoulders tomorrow will inform me, I'm sure.

For tomorrow, I just have to keep slots free for receiving and putting away my groceries.
Little things in a small world.  But's that's the budget I'm on.
"Reality is trumps".

Sometime this week the winter's solid-fuel is arriving: nets of logs and bags of smokeless anthracite.  Getting that put away will need to be spread over at least several days.
More of a strategic task!?

Sunday 30 September 2012


Spotting the difference is actually quite tricky if I'm not careful: no different mealtimes or activities, no weekend sports or social events to be a marker. 
Perhaps I should invest in a different set of lounging gear for Saturdays and Sundays... Weekend dressing down, or up?
(Sheesh, what would "down" involve? )

I've not lost track of the days so far, but I'm sure I will at some point.  It's got to be almost inevitable in this not-quite walled-in existence.
Sundays is "order the weekly shopping" day.
Monday evening is "prepare rubbish for collection."
Tuesdays is "groceries delivered " day.
Wednesday is normally the morning my cleaner comes, and I crash out alternate weeks on my bed and in the lounge, to free up each in turn.

Thus the regular events.   And that's about it.  No regular visitors, unless you count the postman.
"Visitors" is odd.   I could do with just a touch of a break from my solitary confinement, but it's almost impossible to keep the contact brief enough to be other than seriously draining, costing the rest of the day or more.  Even trying to explain that to folk takes me well over budget for a sensible contact time
My board-game collection is gathering dust.

Never mind.  "That which is, is." Charles Fort.
And I do appear to be on-schedule for my Halloween window display, and getting the big Christmas present finished and posted off to New Zealand for my brother's children.   With a snail's work-rate, the pacing for these sorts of things has to be worked out a long way ahead.

Friday 28 September 2012

Friday is not cancelled. Willy-nilly.

Days turn up, ready or not.
"creeps in this petty pace from day to day" as Shakespeare gave Macbeth to say (he having a bad day, month, year...)

It's odd.  Some times it doesn't seem to be a petty pace at all.
Prepare breakfast, eat breakfast, wash, dress (after a fashion), check the morning's emails and support group messages, taken with the appropriate and required extensive rest periods, and that's the morning gone.  Just like that.

On a good day I can open Skype to see if my family or one of my few other friend contacts is on-line for a brief chat...  but that is only on a good day currently: I was a little better a few weeks ago, and now it's evidence that I'm a little more tired than the coping level I'm aiming for.   I must think on that, and possibly work a bit more (more?) rest into my routine until I'm more certain I'm stable.  Are my duff batteries becoming more duff?   I have at least plenty of opportunity to consider this, when in horizontal mode.

And I'm not going to get excited or anxious about the idea.
"That which is, is." (Charles Fort)
And anyway both responses are high-energy luxuries I can't really afford.

Maybe shape a few bits of balsa and plasticard tomorrow: I still have the Halloween window display to get into shape, in five-minute bursts.

Not exactly a five-year plan, but it'll do for now.

Thursday 27th is cancelled owing to lack of interest.

No, it wasn't that bad, but with a greater than average degree of aching limbs promoting a larger than average amount of sleeping, or near sleeping, not a lot happened.

I'm not sure how to go about noting such: there are going to be a good number of these days in my life, as far as I can see.

Just to leave then out as "boring" immediately starts to distort how life with my CFS actually is.
Making several paragraphs out of some tiny event in the day also skews things.
I managed to post a few contributions to support group forums, and add a caption to the bunny picture.

No garden activity, no trains.  No DIY or housework.
Than goodness for Radio 4!

Wednesday 26 September 2012

On not being a Duracell bunny...

Highlight of the day.
My "quick and dirty" physical illustration of CFS has got to primary completion, and first photograph:

"Chronic Fatigue Syndrome/ ME
When you are not a Duracell bunny any more, 
and the duff batteries your body now has 
won't even recharge properly."

I may add text to the photos, or add a sign with text behind the bunnies.  I could do both, if I do it in order.  I will have a think during one or more of tomorrow's rest periods, when not actually asleep.
Unless my subconscious settles it while I am asleep.

Hmm. Who's "I" that's busy when "I" am asleep?
"I" is complicated.  A "Not tonight, Josephine", for that question.

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...

Monday 24 September 2012

Pace, pace, pace...

Slow and steady.  It's got to be the way.
Even if it is for a long, long haul.
And it's going to be a month or more before I see my occupational therapist again: she was due today, but is ill!

I invested in a serious bathroom session today: soak, shower, trim hair and beard... That was half the day taken care of with appropriate rest.

Later a few minutes part-preparing one of my multifuel stoves for the autumn/winter.  Some more five-minute sessions required there.
I haven't yet worked out how to stock up on fuel though and, rather amusingly, I think keeping the stove fed could come close to using up my activity allowance while it's burning!

But to report a little progress on something not at all essential,
conversion work has started on producing a Chronic Fatigue Syndrome bunny:

Original on right of picture, flaked-out one on left.  
Dr Frankenstein strikes again.

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.

Saturday 22 September 2012

And the results of the experiment, Doctor?

I left the house today.  Not counting making it the few steps to the garden, for the first time in three weeks.

I needed one or two things from the village shop, and, not feeling dreadful this morning it seemed worth checking for a benchmark.

I drove the car 200 yards down the hill, bought four items, and drove the 200 yards back.  Ten minutes, fifteen at most.
Legs were shaky in the shop, and I needed about three hours of rest once I got back, with not too much longer-term ache etc., that I've noticed so far: tomorrow morning may be the decider on that.

Good, and not so good.
I want to be able on rare occasion to go into town and do a few things, that can't be delegated or done on-line.  About an hour, maybe ninety minutes.
It looks as though that's going to be possible as things stand,
(and not as things fall over)
an hour "down-time" or rest is again coming out about right, for every five minutes of activity, but best done for every hour, not stored up.
Ninety minutes out is going to take two days to recover from, at least, assuming I'm doing essentially nothing for that time.
A fair old price.

And about the same as the last time I tried this.
Not much better, not much worse.

The game continues...

Friday 21 September 2012

Here, little bunny...

During one of my many rest periods my brain floated to other people not understanding CFS, as seems to be a frequent complaint judging from support group messages, and the various illustrations that have been used to try and get this across, from "spoon theory" to "the opposite batteries from the Duracell bunny".
The latter made me wonder about taking a Duracell bunny of some kind, and making a CFS bunny of it.

A very little bit of research gave me the "bunny at the end of its rope" (tether?) in this ad.

And while eBay showed me that some Duracell/Energizer (US) bunnies are incredibly collectable and expensive, I did find this small one at under £3 including postage.

Tempting even if, as ever, my inner energy budget is looking at me disapprovingly over its half-moon spectacles.

Oh, to heck with it, I'm going to get a couple.
You've got to let the humour out to play at times, even if black and twisted.

Results soon?

Thursday 20 September 2012

Completely drained of blood...

I woke up this morning,(after a better-than average sleep), not drained of blood because I'd all unwittingly moved Dracula in yesterday with his model, but with a level and type of sensation I've not met before.
No aches and pains or fatigue as from a feeling of tiredness or overuse, but simply a state as though my muscles were very largely not there, or were not responding.  Making breakfast was an incredible effort.

(I go at least that far, as a rule: some of these early morning effects don't last.  Some do.)

No great problem, one might suppose, given the unsullied snowfield that is my appointments diary. Unfortunately it wasn't quite as simple as that, as in addition my brain was refusing to shut down, having locked in to some unusual "high awareness" state.
No just drifting of to sleep or half-sleep.
Lots of half-listening to the radio, then: about all I could do.
The "high alert" feeling in the brain was not matched by any enhanced clarity of thought.
This from about 7am, and it was still present, though fading, at lunch time, after which it turned into the body demanding a real sleep rest.
That I could cope with and was a relief.

The image I have, though I know it wonlt mean much to many, is of a small DC motor fed AC current.  It's very live, but it just vaguely twitches, unable to do anything.

I don't want that experience again in a hurry, though I realise I may not have much say in the matter.

I'm still not quite done with it, or its after-effects: my typing here has been much worse than usual, and taken a lot more correcting.

Being drained of blood might be simpler.
You called, Master?

Wednesday 19 September 2012

Enter, Dracula...

One railway swap was accomplished today at least, and a few weeds pulled in the garden, but this morning I was *still* feeling the effects of that one wretched tablet.
One more "emergency only" option noted.

So, the Sylvanians are on hold and the Transylvanian is back,  with three weeks or so to get the Halloween line working reliably.
Preferably with a little added horror compared to last year.
(there's something of an arms race about this: each year a "better" performance is expected.  In about fifteen years there will be nothing for it but to nuke the village.)

And I do have an idea or two for a really low-impact participation in the delivery of sweets and scares, involving small remote-control winches. If not excessive in time and effort to *set up*, it may fit my requirements.  Plus, it will be new.

Christmas looks like being settled, with my parents joining my brother and family in New Zealand, and me on my own here in the UK.
No, it's not ideal, but falls under the "better 'ole" consideration.  I can't think of a better move, or we'd try it.
The Asperger's does mean I'm relatively well set-up for coping alone.
Those with CFS with a large and active family all around them are likely to have extra difficulties.

Meanwhile I must check if the demon engine is still working reliably, and see if Dracula rises from his coffin correctly: or whether work on the undead is required by the half-dead.

Bite me!

Tuesday 18 September 2012

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.

Monday 17 September 2012

1/11th living. Or thereabouts.

Between basic chores surmounted by doing a one load of washing, I didn't get far along in the plan of making some space in the garage (which has never seen a car) in order to shuffle activities so as not to be taken by surprise by Halloween or Christmas.

"I'm going outside, and I may be gone... for five minutes."
And that was enough to notice a fatigue burning in my forearms and biceps, even though I was not shifting sacks of coal or nets of logs.
A few relatively light cardboard boxes was all, be for the five minutes was up, and the fifty-five minutes of rest cut in, and I was ready for it.

The same in the afternoon, and that was it for the day, as far as tasked activities went.
(Beyond making supper, getting the rubbish ready for the collection tomorrow, etc. The routines which eat up repeated precious five minutes with nothing lasting to show for it.)

There's always tomorrow.
...and tomorrow, creeps in this petty pace...
No, lets not go there today.

Today when resting I did have a nice nasty idea.  I wonder of i can find a cheap Duracell bunny and convert him to the Brand X naff battery version as an image for CSF?
The idea appeals but, as ever, my energy budget is looking at me disapprovingly over its half-moon spectacles.

But you've got to let the humour out to play at times, even if black and twisted.  I do fancy a CSF bunny of some sort.
I shall turn it over, gently, in one  or more of my periods of rest tomorrow.
Rommel's dictum applying:
"If you have a difficult job to do, give it to a lazy man.  He will find an easy way to do it."

Or just, with CFS, some energetically economical way.

Sunday 16 September 2012

I'm reviewing the situation...

"...Better settle down and get myself a wife."

Well, I think we can knock that one on the head, for starters.
No, more reviewing the period from here to Christmas in the light of what might laughingly be called my rate of activity.

So many demands on my time!

Autumn and winter coming, six weeks to Halloween, roughly.

The Sylvanian railway window display is not going to be ready before I need to have the Halloween one working.   And not so long after that the Christmas one, improved and working.

Therefore the Sylvanian one should go into abeyance, and Dracula's come out into the "working on" spot.  Now.
But how I'm going to manage being on traditional duty all Halloween evening I can't work out yet.
I'd HATE to duck, but if I don't that's going to cost.  Days.

The big present for New Zealand also needs work before posting.
That's probably enough on toys and trains.
The is some exterior work needed on the south wall, which I can't ask anyone to do, and I can't afford to pay to have done.

And then winter fuel: the smokeless coal and the logs and kindling for the stoves.
Last year I made that it in two separate days with the car, resting up after each.  It will easily cost me an entire week now, and not a comfortable week at that.   Delivery?   Not at a quick first look.

But I'll need at least one town/bank trip as well... some things can't be done on-line.  And another day or two's rest.

Putting that lot in sequence, the first task is making enough room in the garage for the Sylvanian railway and all the winter fuel.
A week?  Two?

Tearing into jobs with enthusiasm is not a viable option anymore.
And pacing means that's going to be a full life, for certain values of life, until Christmas.
I could have knocked the lot off in a couple of weeks, back in the elder days.

For Sat 15th. I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

I must learn not to overdo it.
I must learn not to overdo it.

Actually with cut and paste this doesn't ram the idea home as much as it might, and doing it by hand, with CFS?
That's just a silly, self-contradictory idea.

Saturday 15 September 2012

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.

Thursday 13 September 2012

Just thinking...

I do a lot of that.  I always have.
I have even more time for it now, even if I have to take some care on not pushing myself into fatigue with concentrated effort.
A more easy pace is required: I'd not be able to play chess well, pursuing down chains of moves, that would be far too demanding.

Solitaire marble puzzles are proving a good level of distraction when rest is required but the mind will simply not lie still.
I've got to playing with new formations, just for the variety and fun.

Words and language also get considered: watching language drift and change.
If enough people use a word wrongly, the same way, does that become the real meaning?   Meanings have migrated in such a manner in the past, and some modern ones can be spotted.
Then there are the modern fashions, and words that need retiring, or rescuing, or putting up against a wall to be  shot.

No, I am not a grammar Nazi, I am a grammar Rommel: while I fight in the cause of good language, I may turn on my own side if it becomes too tyrannical.

Poor "ultimate": popular, but  rarely if ever truly meaning ultimate, these days.  It just gets pushed into place as stronger than "new" or "latest".
"Your ultimate holiday destination/experience"
Do they shoot you after the holiday, or ban holidays so you can have no more?

Poor "affect": a perfectly good word, but the usurper "impact" has almost totally taken over, even where it is a poor fit, simply because it is thought to sound more forceful.
Or worse because many now think it is correct, or the fashion.

The Olympics and Paralympics television commentators were almost without exception fond of "quicker" when standard grammar would require "more quickly", "easier" instead of "more easily".
It may be what would have earned me a black mark in my English lessons is now normal practice.
In which case it's another marker of me getting old.
I must do some more careful listening and reading.

No, I don't spend my days actually thinking about my CFS.
It doesn't dominate me that way.

Wednesday 12 September 2012

A louder Sounds of Silence.

A generally peaceful day, as I found I needed to sleep and rest an awful lot.
If optimistic, I could take it as a possible precursor to a more active tomorrow.  We shall see.

But, lying down and hugging pillows, in between the actual sleep and the listening to the radio there was more than enough to meditate, contemplate, mull over or just think about one big irritation with my CFS.  One that's hard to be neutral and accepting about, even if that's the best approach.

When horizontal, still and comfortable the muscle aches and pains are minimal, the fatigue is not really apparent, and there is no significant issue with balance or vertigo: a gentle rocking sensation can even be filed under "nice" at such times.

But the tinnitus.  That does not let up for being still and quiet.  Almost the reverse.
Snap, crackle, pop, and whine.
Much louder and more varied than the constant even tone I had more or less become accustomed to in the previous thirty years, before the first symptoms of CFS (or possibly its precipitating virus) appeared.

Masking, background sounds... headphones, I've tried a variety, but with little success.  White noise loud enough to mask the tinnitus is pretty much akin to standing under a major waterfall.
(I've actually done that:
..the bottom of the Sutherland Falls, near the Milford Track, New Zealand.  But I digress.)

I'm OK, so far.  But of all the bits of CFS that have the potential to drag me down, the new tinnitus is the one I suspect is most likely to prove difficult to cope with in the long run.  And I hear no sound of cavalry hooves from just over the brow of the hill.  Just the usual.

I am OK, for now, honest. 
The stoicism and the black humour are holding out.

Tuesday 11 September 2012

Reality is Trumps.

There's nothing wrong with a good fantasy: Tolkien, Gemmell. Pratchett, Adams...
I've enjoyed many varieties.

But I'm not at all keen on mistaking fantasies for reality.
Not even, or perhaps even especially, when the fantasy would be a lot more pleasant than the reality.

God knows 'twere better to be deep  15
Pillowed in silk and scented down, 
Where love throbs out in blissful sleep, 
Pulse nigh to pulse, and breath to breath, 
Where hushed awakenings are dear...
From Alan Seegers' "I Have a Rendezvous with Death", where the speaker has a fantasy he might even turn into reality, did not other realities such as principles, and promises made, already exist.

But what has fantasy to do with CFS, and the daily round of managing it?
For one, for me, it means that I can't use unrealistic projections or undue optimism as means to create or sustain a positive mood.
Grounded optimism, fine.
A view plucked out of nowhere that "everything will turn out for the best."  (or any of its relatives) sounds nice, but with my autistic analytical brain such sayings do not survive critical analysis, and critical analysis they get.
I'll be very happy with any castle in the air whose foundations pass building regulations.

Reality is trumps: two conversations today, one with a neighbour, and the second with the driver delivering my week's groceries, took me to my activity limit for the day, though neither were long or in the slightest demanding.
Extra hours of rest were required, and no wishing or pretending it were otherwise would serve to make it so.
Whatever I would like.

"That which is, is."  Charles Fort.
Very much said in the context of attempts to set-aside reality for some preferred alternate world-view.

My limitations today are what they are, likewise pains and aches.
I start from here.  I wouldn't suggest anyone else does, unless they have to!

Monday 10 September 2012

Sport For Everyone. Possibly.

I wondered if there would be a major outbreak of enthusiasm for sport for the disabled following the (admirable, successful) 2012 paralympics in London.
Or even a meme lodged in the public mind that everyone with a disability could and should be in some sense athletic.

No, I don't want to detract from the dedication and achievements of paralympic athletes.
Or differ from the view that many with disabilities can be encouraged, with very positive effects, to take on activities they had not previously considered within their abilities.

It's just that I don't want to see the pendulum swinging to far the other way, where anyone who is disabled and not engaged in sport is obviously just not trying.  Or are merely invisible and forgotten, since they are not out being sporty in clubs and venues.

This has been on my mind while seeing all the paralympic sports in which I could not compete or participate,  and was crystallised by a piece in the BBC "Ouch" blog:

"Boccia: A sport for all."
But is it?

My comment there:
"I'm thinking...  Could I play Boccia?
Yes, if I allowed for it taking over much of my life.
An evening's activity I'd be paying for, heavily, for the next three days at the very least.
That's standard payback, with chronic fatigue syndrome.
Competitive Bonsai as a sport? The pace would be about right!"

No, I don't want to be negative, or to depress people.
But I don't want to be miscategorised, misunderstood or overlooked, either.

Sunday 9 September 2012

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.

Saturday 8 September 2012

One Prediction Comes True.

Not a terribly long-ranged or extraordinary prescription: I did need, and did have, a quiet day today.

One train did get running, with a reassuring click of wheels,
a few weeds died.

But not much else.  Too much muscle ache, too much muscle weakness.
Even more need for stillness and rest.
It's an odd game: aching and feeling tired, waning to rest comes easily,
But actually getting free of necessary activities, and getting still and relaxed and staying in that state are not trivial tasks.

A phone call, the need for a trip to the bathroom, the brain starting to think rather than to quieten... all get in the way of getting *really* still and inactive and relaxed.

Yes, there are worse and far harder levels of inactivity:
In a dugout under shell-fire, with nothing to do but wait.
And, proverbially,
"To stand an' be still to the Birkenhead drill is a damn tough bullet to chew."
So let's not exaggerate the toughness of lying on a comfy bed.
But when one wants to be doing: fixing things, contacting people, pursuing hobbies and interests...'s fair to say it doesn't always come instinctively or easily.
A strange enemy makes for strange battles.
That's Chronic Fatigue Syndrome, right enough.

Friday 7 September 2012

A Weed Too Far.

Well, the  tree surgery wasn't a problem.
(Not me doing, it, of course.)
A couple of minutes of conversation and not only is the overhanging tree well pruned back, the nice people even took way the dead wood from my own trimming efforts of about eighteen months ago.
(No, I was not climbing ladders even than: I have a pole lopper from the time I had a mad Californian lilac, in a previous garden, that didn't know when to stop.)

Getting a couple of trains running wasn't too much of a problem, either.
About three hours with proper rest (i.e fifteen minutes!)

Trouble was I blew it on the lying on the grass, listening to the relaxing clickety-clack of the wheels.
Yes, I got that far, and it was good.  And I did five minutes of weeding at the appropriate time.
But then there were the weeds right next to the ones I had pulled when my five minutes was up.  And the ones next to those that also needed culling...
At least I only went slightly mad.
I could also see where I need to work on the stream and the watermill lead; and on the camomile, trimming and transferring cuttings.
And on truing the track in three or four places, though it isn't disastrous.
It nearly all needs the ballast topping up, though, and I've got an untouched sack of chippings for that.

And that's even before I start to think of making *progress* with new station buildings..., I've not yet completely acclimatised to my new limits of activity, where an afternoon's railway work now takes two or three months, assuming nothing of actual importance and priority turns up.

I've mostly acclimatised, and can usually plan on the correct scale and timetable, but just occasionally the difference really strikes home.

And now, due to the weeding  binge, tomorrow must be a *quiet* day.
Perhaps I will be able to listen to the clickety-clack, and leave it at that.

Thursday 6 September 2012

Visitors, a CFS marathon.

Two lots of visitors due tomorrow, so absolutely minimum necessary activity today, ensuring I am as fatigue free as possible.

Didn't wash, for instance.  A wash and shave will be required tomorrow, of course. (1 hour.)
Breakfast, dress. (1 hour)
Early in the morning, a couple of people are coming to do some tree surgery: strictly my neighbour's tree, but parts of it are more accessible from my garden.  Five minutes of admitting and conversation?  (1 hour)

My, how the hours just fly by.

The bigger demand will come in the afternoon: a neighbour has asked if some visiting children can see some trains running in my garden, as they loved it so much last time.

A test loco did manage to get round the main-line this afternoon, so I should be able to have a couple running.  With about fifteen minutes work.  (3 hours)
And if they are not here too long, say ten minutes (2 hours)
and allow for lunch and supper, going up and down stairs two or three times, say (3 hours), and looking at this computer for ten minute's worth. (2 hours?)

If I keep track of that carefully, it may show if I can actually average five minutes in the hour without payback.

I have a suspicion, now, that I can't, and that I've got a bit worse.
But this shouldn't be a ridiculously over-the top test.

And since the nearest person I have to a guru, Mr Rowland Emett, when  asked about the final product of his work, said it was "to put the smallest smile in the face of the beholder", I like to think the same, and it's worth putting some effort in that direction.

I mean, if I can't even make a few people smile occasionally, justifying why I continue to take up space gets more tricky.
And to avoid confusion, that thought comes half-seriously.

Wednesday 5 September 2012

Two steps back?

Very much a do-nothing day.  Marked muscle ache just from doing too much yesterday means I did little but assume a horizontal position today.
No work on house, garden, trains...  It was very little more, indeed, than letting my cleaner in.  I was fast asleep when she left.

But yesterday was not full of physical activity.  The main unexpected demand was handling a phone call from the BBC and thinking about what to say, and considering variations and options, and how to be brief.
(I hate phone-ins where people waffle or don't speak to the point.)

No, not physical activity, but mental: concentration, hard, conscious, focussed thought.  And that's very tiring too, and comes under the "limited energy budget" limitations.
That's why reading is now very tiring: it's not principally an eyesight problem but an information-processing one.
I live with a thousand friends, but they now have a very limited ability to speak to me.

Emotional activity subtracts from the same tight budget too... getting excited, or getting angry, costs.
Raging against CFS only exacerbates it.
Bursts of enthusiasm can very much feel good: why should they not?
But they cost, they really cost.

It seems that a Buddhist-like calm is the way to go,
as long as it doesn't take too much effort or concentration to achieve it.
Did I mention Catch-22?

Tuesday 4 September 2012

Not according to plan...

So while I was, this morning, largely recovered from the modest excesses of Sunday (i.e., having visitors) the idea pencilled in for today did not survive contact with reality.
No garden, not trains.

Rather, an unexpected phone call from the BBC "You and Yours" about an e-mail I'd sent, and the possibility of my contributing to today's programme on Radio 4.
("Will the Paralympics challenge negative stereotypes around disability?")

(I'm at 13.40)

We used the e-mail rather than putting me live, in the end.
But that was enough activity for one day.
Pretty much for the whole day, when added to Tuesday's regular two-hour (including rest) task of taking in and putting away the week's groceries.
Ah, well, the only "must" for tomorrow is being awake enough at the right time in order to let my cleaner in.

Hardly Paralympian heroism.
But then CFS doesn't really fit that paradigm.
Let's not get this wrong: the Paralympics coverage is positive and inspiring.  It's just that lots of people operate with "soundbite" mental images and idea, and the Paralympics gives only a very partial image of life with disability.
The other images, and more complex ideas need to be communicated as well.
(I did my "event", and posted an e-mail that got to air.)

Monday 3 September 2012

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.

Sunday 2 September 2012

Plans, not even well-laid.

I had some unexpected visitors today, for half an hour or so
Ex-neighbours who moved north at the end of last year for better jobs.
If t was good to see them, but it's wrecked my activity/rest plan for today, and tomorrow: 
I've got to find around 3-4 hours extra rest to balance things out.

And that's not just to make the schedule come out right on paper.
I'm feeling it. Forty minutes, low stress, with friends.
More than I can budget for, cope with,  on any regularity or frequency.

I'll scribble a bit while resting tomorrow morning, juggling the "have to do" things, so it's not all boring necessities.  A little bit of cliff and plasticine work, I think, somewhere.
(Subject to phone calls, visitors or meteor strikes)

My mood continues at least stable, edging towards positive.
I at least know what I'm trying to do or not do.
Yes, I could do with someone to give me hugs, or mop my fevered brow, but it's clear that company, never mind a girlfriend, would be liable to be a disaster.  
I'd go straight into attempting reciprocal "doing", which is just not on in my current situation.

At least my parents understand that, as we've had the first tentative discussions about Christmas, and it being OK to leave me alone and for them (possibly) to go to New Zealand.
I go by my Bruce Bairnsfather.  It's not a brilliant 'ole I'm in, 
but in lieu of a better one being visible and accessible I've got nothing too much to whinge about.

I can think of much worse holes I might be in.

Saturday 1 September 2012

Back on track.

Provisionally, anyway.
Or tentatively, which is not quite the same thing.

A day going to plan where 9% active and 91% resting worked, and allowed a few things to get done without excessive fatigue either preventing the 9% or showing up in the 91%.
It's not exactly working like a navvy, or sixteen to the dozen.
(A term originally applied to a steam engine considered to be working  efficiently, rather than at frantic pace.)

A good wash and shower, and a little productive work on indoor railway projects:
three pieces of cliff cut to size and spray-painted.
One purple station-master's waistcoat fitted to Sylvanian bear.
One driver's cap shaped and fitted to smaller bear.

It's not exactly a blitzkrieg advance, more creeping by millimetres,
but I'll settle for that over the struggling to simply hold the line by getting through the day, as it has been lately without anything measurable being achieved apart from that.
"Well, we're still here."

Maybe a few more bits of cliff tomorrow.  Yes, this is the trivial.
Take it as training exercises, perhaps.  The bigger stuff comes later, an' all goes well.  Going cautiously.
If the weather holds a few ferns and dandelions may die.
But no trumpets calling the charge, if you please.