Thursday 30 August 2012

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.

Wednesday 29 August 2012

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.

Tuesday 28 August 2012

It is Monday 27th August. Here is the news.

There isn't any.

Monday essentially did not happen.
Having not slept well for a couple of nights, I took a sleeping tablet, prescribed for such occasions.  Or rather I took half the prescribed amount.

Not only did I get a good night's sleep, I got most of a good day's sleep as well, was incapable of doing any real activity and at nearly noon on Tuesday I'm still feeling the effects.
(You are seeing this text after three clean-ups.)

It's a different sort of "call to the horizontal" from my usual CFS fatigue, though I decline trying to put the difference into words.

I won't be doing that too often, though I'm going to come out of it all quite well-placed.
It's an odd thing: I've tried a range, via my doctor, and finding a medication and dosage that will give me reliable sleep without doping me for the rest of the day has proven a very difficult quest.

But quirky reactions to medication are a feature of both Asperger's and ME, so I'm not dreadfully surprised.  Been there with anaesthetics, too.

Sunday 26 August 2012

Not... quite... there.

It's a slow game, this recovery from a visitor.
Good job I was never part of a busy social whirl in the first place.

No visitors planned for this week at all, barring deliveries, and I'll see my cleaner for a few minutes: I pick one room and crash out in it while she's here.  Staying around to talk, or help, is just not on.
Not what I wish, but what is.  Reality is trumps.

But if little unexpected is expected,
(Remember to allow for the unknown unknowns, as far as possible),
this may be a good week for being very orderly about routine, rest and activity.
With the help of one or two or three novelties, perhaps.
My occupational therapist suggested using markers to help keep track of my activity spend, and I've put something together a bit more attractive and less likely to be forgotten than a piece of paper with marks on it:

Six used, somewhere near lunchtime.

The trick is going to be using it enough that it becomes routine.  Otherwise remembering  it, and counting up, is going to be a chore.
And sooner or later start getting left undone.
Ah, well, the experiment will tell, one way or the other.

I may also have found some ultralight activities to help with resting.
The adding Plasticine to Sylvanian figures is actually very low stress.  No glue, and easy enough to correct anything that doesn't look right.

I've also found a small second-hand peg-board with pieces so I can have a play with inventing different forms of solitaire.
No hard concentration and calculation, just "toying".
What else are toys for?
(He said, having a slight dig at collectors who take it all far too seriously.  A toy that has never been played with is a sad sight to me, not a marvel.)

I'm not sure you'd quite call that a plan for the week, but it will do.
A bit of me will perform it, while as usual, a bit of me watches and makes notes.

Let's see how it goes, with very small steps.

Saturday 25 August 2012

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.)

Friday 24 August 2012

Go with the flow...

It's got to be more like judo than boxing.

And I'm still not back to par from my visitor on Wednesday, so it's a matter of going with that. 
The day really didn't start until about eleven o'clock: not so much pain this time as distinct dizziness and lack of coordination.  This thing is so variable!
Any plans or ideas have to be made "wind and weather permitting", and with the equivalent of dodgy weather forecasting, to boot.

What is inevitably going to provoke a reaction is getting more predictable, (subject to the rules changing once again) and this current example of the consequences of seventy minutes of solid conversation and concentration has added more information to that.
Call it progress, in a "mapping the territory" sort of way.
That's positive spin I can live with.

Things done?  Still not much, inevitably.
A very few posts to the CFS group, a model railway query answered,
and heresy or just possibly an abomination committed on a Sylvanian families rabbit.
Well, one has to grab fun where you can find it, and this could be done lying down and with very little physical effort.

The police can't touch me for it, but I might get lynched by Sylvanian collectors if they find out.  Which tempts me to declare my vile act, and see what the reaction is.
Photos in the Sun in a few day's time?
Probably not, but I may post them here.

It's the little things that cheer you up and keep you going, and from an idea found in Neil Gaiman's Sandman:
"It's the madness that keeps him sane."

Thursday 23 August 2012

Still in debt...

...and running on about half the target schedule: two hours off for every five minutes on, approximately.
Not my choice, unless I count my body as "me", in which case it's my choice.

"I" is very tricky concept, except typographically.
When I'm stuck on some cryptic crossword clues I find I've often solved one or two while I've been asleep.
So there's an "I" that wasn't asleep?  Start thinking from there.

Things done today: a few postings to a support group, a checking of e-mails, and here.
One piece of balsa *half* cut to shape for a model railway loco. One missing parcel tracked down by phone to the local delivery office.
No TV watching, no gardening no DIY, no Skype conversations, no paperwork or housework.

But I can have better hopes for Saturday, for being back up to 8.3 % living, give or take a few percent.
Today wasn't a bad day, just one loaded with a response to being weary.

From an hour or so with a visitor, two days ago.
It's hardly a labour of Hercules, is it?
Except this is the reality concerning what can scale out as Herculean, with CFS.

Wednesday 22 August 2012

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.

Tuesday 21 August 2012

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.

Monday 20 August 2012

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.

Sunday 19 August 2012

Just checking the armoury.

Several exchanges on a CFS / ME site I inhabit have highlighted the issues of depression and ME, in the last couple of days.  A lot of people are struggling.
And I have a lot of history in the area, though I'm not in the depths at the moment.

A good low impact activity for  my "rest" mode is mulling, as long as concentration and excitement are avoided, so the discussions (with many people far worse-placed than me) prompted the idea of doing a quick observation my mood and check on my tools for monitoring and managing it.

My mood is generally fair, I reckon.  Hardly elated, but that was a rare event even before the ME came along.  I can get up to "pleased" fairly reliably, if the situation calls for it.

Pills.  No change since an unorthodox combination was tried on me by the consultant in charge of the ECT suite I had been referred to, my depression then having got that far.  Most effective I've ever had, so we're leaving this well alone
Only issue there is making sure my repeats reach me, as collecting my own is becoming less and less a good idea.

Talk therapies?  Don't need currently, but little worthwhile available locally: I was better-informed than the last two therapists who tried to help.

Social life and company?  Well, I'm odd of course.  Much social interaction is a drain, not a resource, for me.
With the significant exception of physical hugs, the internet really does provide what I seem to need.  Especially since I have so little energy to invest in contacts and relationships.  Two support groups, a couple Skype contacts in addition to my parents and brother.  A small world indeed, but mine own.
More might be more than I could cope with.
Except for hugs.  I have no answer there.

Routine versus variety?
Day-to-day chores and activities are stable, for now, with help.  I detect that the  lack of variety of things to do is a risk to my mood. Not easy to stretch that.  Something to have more of a mull on.  I'm good on my own, but reading and model-making, major hobbies, are very badly curtailed by the ME. Garden work and DIY too.  Colour this orange.

Bloody-mindedness.   Check.
Black and twisted sense of humour. Check
Appreciation of the absurd.   Check.
Self-esteem safely disconnected from job status or income.  Check.
Unrealistic perceptions of fairness of world eliminated.   Check.
Illness accepted.  Check.
Possibility but not promise of recovery understood.  Check.

Hmm.  Apart from the actual situation, it's not looking too bad.

Saturday 18 August 2012

Apropos of nothing much...

.. how do you treat a sparrow with OCD?

With CFS one has to make the most of little events, to distinguish one day from another and give little treats of stimulation or entertainment.

And no, I have not gone completely mad.
I'm keeping that in reserve for now.
(At least unless I imagined the whole thing, in which case would someone call the relevant authorities now.)

OK: one of my chimneys has a cap on it that some sparrows like to sit under (not when I have a fire going). Just very, very occasionally one of them loses footing, slips down the chimney and ends up fluttering inside my multifuel stove.

Provided I'm in the lounge to hear this before they die, I can release them, having opened the front door of the house  to give a clear and obvious route out.
Currently, the front door of the stove is cracked open for ventilation.

And indeed today I have had to assist a sparrow that has got inside the house and started fluttering at window, trying to get out.
Five times.
The same window.
I'm assuming it's the same sparrow with habituation problems.
But why would you keep dropping down the same chimney and getting trapped over and over?
Is this a sparrow with a death wish, compulsion issues or other problems?
Could it just be attention-seeking?

The only other option I can come up with is that my chimney and stove has suddenly become some sort of sparrow fraternity initiation "rite of passage".
That's possibly more disturbing.

But if this continues can you do CBT with sparrows, or have I got to go to mere Skinner-type conditioning?

Ah well, it's made for a different, if slightly perplexing, day.
And with CFS anything that breaks the dull routine is a bonus, providing it's not too demanding of time and effort.

I wonder what tomorrow will bring?

Friday 17 August 2012

Not so bad, really...

I was at least present for most of today.

(Jeremy Hardy: I try to live each day is if it was my last:
lying in bed, drifting in and out of consciousness high on painkilling drugs.)

Some people said some nice things about posts I'd made in different support groups, so bits of my mind are working, and I'm not totally useless.
I sorted out a bill over the phone, and bought a pair of slippers on eBay.

Such are markers and milestones, as things stand.
For tomorrow the plan, subject to contact with reality, is to budget for doing a load of washing.
Changing the bedding is a "spread over two days" job.

Progress on model railway hobbies grinds to a complete halt on such days, at the moment.  No spare five minutes tend to appear.
And on that September's railway allocation will have to go to renovating the Halloween train window display...
Sheesh, even handing out scares and sweets will take me over the activity allocation, as things stand.
Hmm.  I must give that some thought, in those rest periods when I'm drifting in and out of consciousness.  Me and my subconscious can be very fruitful, when we swap and change like that.

♞ Missed due to not being awake, mostly

For Thursday 17th August.

No trouble at all sticking to the 5/55 divide today:
my body really didn't want to get going at all, and fighting it didn't seem like a good idea as it was presenting muscle ache, especially around the upper body before anything happened.

Not quite in the Jeremy Bentham mode of "present, but not voting", but I was not a million miles away, in terms of things actually done.

Wednesday 15 August 2012


A useful word, but one very varied in meaning.

My Aspergerness wanted to know (as it often does) where the word came from and what it really meant, so as to be able to use it correctly and well.
What are coping stones anyway, and what do they have to cope with?

"Cope" comes from the Dutch for "cape", and proper coping stones at the top of a wall are wider, allowing rain falling on them to drop to the ground rather than simply run down the wall.

So if I'm coping, I'm using a cape.  Protection, shelter, or shrugging off the rain and storm.  But I've detected two versions of modern usage.

"How are you managing with the Christmas rush?"
"Coping quite nicely."
(resources are holding out... there are no nasty surprises, the system is not under stress: it's doing it's job and coping)

"How are you managing with the Christmas rush?"
"I'll cope."
(resources are barely holding out...   tricks or shortcuts or short-term effort beyond the sustainable are being employed to get by, the system is under stress, and there are some things wriggling under the cape that are best not looked at, now.)
But they had better be, later, or coping gradually becomes more and more messy.

Where am I?  Bits of both, I think.
I've definitely acquired some positive, sound, coping strategies and attitudes over the last two years.
But I'm not sure where I am now is truly sustainable.  There's still some make do and mend, some "for now" in my getting through the day which I don't think I can keep up for ever.

Which requires me to get somewhat better (in due course) or learn even better coping with the way I am now.

Neither of those is exactly assured.

Tuesday 14 August 2012

Second helpings, unrequested.

Today was another one with marked brain-fog and jelly legs.

Just receiving and storing the week's food was a major task.
No opportunity for clever words, allusions or pictures, this time.
Everything including that is very had work, today.

Let's hold out a little hope for tomorrow and note that today, at the least, has been got through.

Monday 13 August 2012

Nothing happened. Twice.

Having had several nights of poor sleep (it occurs, irregularly) I took a tablet last night.  Just one, only half the dose recommended on the prescription I have been given for such circumstances.

Today didn't really happen:  I woke around ten, feeling like a zombie.
Bed was the only safe place for me, barring the most necessary brief excursions.
I slept most of the rest of the day, and was not properly awake for the remainder.
I won't be doing this again in a hurry, and it hasn't even made noticeable inroads into my muscle pains.
I wonder what tonight and tomorrow morning will bring?
I still feel somewhat "spaced out."
Experimenting and experiencing all the time, on a small scale.

Sunday 12 August 2012

"Knowledge is power"

So, lack of knowledge is weakness, or vulnerability?
Or being alone in the dark with the  compass spinning?

How to handle ME / CFS  (and there's enough just in those preceding characters to let the mists of uncertainty start rolling in, if not the fog of war) is going to depend on what it is, where and what the underlying cause or causes.
Without that one is stumbling in the dark metaphorically as well as literally, and facing a very big extra headache.  Just when one doesn't need it.  Like a Balrog, really.
"A Balrog," muttered Gandalf. "Now I understand. What an evil fortune! And I am already weary."
Another classic "I wouldn't start from here".  Far better to attack the question of CFS when one doesn't have it.  But there it is.

If gathered in the drawing room of the country house, who will be there?
Adrenal stress.
Thyroid issues (T3, T4),
and these are somewhat shifty in manner, as they are not regularly tested for, as yet, by the NHS.
"All in the mind": considered a popular suspect, by a good number of detectives.  The victim did it to himself, all unaware.  Now there's a plot twist.
But some sleuths appear to have made up their minds on this in advance of the evidence.  Sherlock Holmes might have a word with them about that.  However, if guilty, then the steps to be taken to recover the stolen energy and stamina will be very different than if a different culprit is actually guilty, and just needs locking up or a judicial execution.

Gut bacteria: bad ones, or unbalanced ones.
Hydrogen sulphide from the above: the body is continually being gassed.
Fungal Candida.

Other food suspects: toxic reactions and autoimmune ones.
Outsiders seen lurking locally:
Lupus, the Epstein-Barr virus, Lyme disease.

Further, as in a bad novel, the actual guilty party might not even have made an entrance yet, to be suspected.

With a variety of detectives pointing the finger in a range of directions,
we're nothing like at the final chapter, yet.
And yet the poor victim has got to trust somebody and their advice on the right  path to pursue*.
The wrong one, of course, quite possibly making the whole thing worse.

Who to trust?
Now that comes back to epistemology.
Where the honest man (correct), the honest man (mistaken) and the conman all have no trouble in saying "Don't worry, you can trust me."

Has anyone got the last chapter?
And can also convince me it's the right, genuine, last chapter?

If not, this wretched thing is still an improvisation, for the forseeable future.

*unless predisposed to just lie there passively.
And suffer the gratuitous insults of local villagers who are certain there was no crime, except fraud.

Saturday 11 August 2012

"A man's gotta do what a man's gotta do."

Even though not fully recovered from doing too much on Thursday,
to the extent that it wasn't difficult to detect that I wasn't fully recovered, I went out today.

There are some things, even in this era of enhanced communications, that cannot be done from home, or handed over to friendly neighbours.
(If I get that bit worse, such will become interesting.)

I was out and about for less than an hour, with about half of that driving, which I don't find particular tiring, on the easy roads I need.

I accomplished several things, so I'm comfortable house-bound for the next month at least.
(Interesting that that feels better than facing going out, given I have not the slightest trace of agoraphobia.)
So, jobs done: doctor's, bank.

And, at least as important, a benchmark for me should I think to go out more.
I'm starting to pay now, and Sunday will be another "do very little" day, possibly Monday too.   That will be worth recording, especially as in September I'm going to be offered some group therapy work on the management of ME, about fifteen miles away (the nearest possible centre).
As things stand, I don't think I'm going to be well enough to do either the trips or the sessions, never mind the two together even going by taxi, which I could probably squeeze out the money for.

Well, not and have any sort of life for the rest of the week!
My occupational therapist will be visiting in ten day's time, and it will probably be discussed then.  The the trip today will give me a useful perspective, once I see how it leaves me, but given I find anything  over five minutes of activity tiring (barring certain excepted categories that I've found minimally demanding) it is not promising.
Groups I find tiring with my Asperger's anyway: it requires operating at high alert to understand other people well, and if the sessions are as I understand it, to include Cognitive Behavioural Therapy, that's going to be seriously draining.

Not least because when it comes to CBT, there's the good, the bad, and the downright ugly.
Been there, done that, know the difference.
And know it's something else to stay alert for.

Friday 10 August 2012

I must be psychic

Because today has gone exactly as I predicted it would:
limbs all made of fire, lead and jelly at the same time.
A good Japanese animator might be able to justice to that, but otherwise it's difficult to convey.

Therefore I have wobbled around the house moving as little as possible. (Consistent with basic necessities).

In the afternoon, as the shade moved to the right position, I did get to lie down in the garden, and listen to the rhythm of the rails as a passenger train found its way around the main line.

Little more to say, as I'm still running on low activity, except to remind myself, again, of the dangers of optimism and overconfidence.
"You won't get away with this, you know."

Yes, I know.

Thursday 9 August 2012

"I can resist anything except temptation"

Doing, done, overdone...

I was tempted by the positive change in the weather, and some lavender plug plants arriving in the post.
And a wanted to see a train running in the garden.

So I put in some "five minute" sessions which were a bit more than that, even if I did my very best to rest between them.
I can feel the "burning  weight" in my arms now, after 30 minutes of  gentle effort spaced out over the length of a whole day.

And I'll be paying for that tomorrow, and perhaps Saturday as well.
My fault, no-one-else to blame.
But it just tells me what the sensible bit of me already knew: enthusiasm and optimism gets you into trouble, with CFS.
The wrong sort of positive attitude is positively dangerous.

Positive as in not giving in to depression or despair... that's fine.
Positive as in "can do", "she'll be fine, no worries"... that's a distinct wrong call. Unchecked optimism as a trap.

More self control, more discipline.  More steady, cautious pace.
Undisciplined enthusiasm in some of his troops cost Harold the battle of Hastings, his crown and his life.

I knew this.  Tomorrow I'll have the lesson rubbed in.

Wednesday 8 August 2012

"I didn't do it. It wasn't me."

That's pretty much for certain, today.
"We didn't do nothin'. "
(Unnecessary film reference, just because I felt like it.)

A carry-on from yesterday, I think, but still for no obvious reason that I can see, except the CFS being capricious.
The weather hasn't even been tempting me into the garden.

However today, one event required me to reach inside, stiffen the sinews and summon up the blood.
(Actually some of those sinews felt pretty stiff to start with.)
But the Herculean (Olympic, Titanic?) task was faced and undertaken, and I was at least washed and dressed before I had to open the door to my cleaner at 11 o'clock.
But I was pretty much heading for unconsciousness on the bean bag in front of the television by 11:15.
And I neither heard my cleaner leaving, nor the postman trying to deliver a package.
In one sense, I suppose, I was "out" when he called.

Just over a week before my occupational therapist visits again, to find out how I've been doing.  Coping?
"Coping" is an interesting word, when you consider its differing usages and origin.  And I do, since I like to use words properly.

Am I coping, or only coping?  But that's for another time, and noting that is itself more evidence of fatigue, because I don't put down special interests that easily.

Tuesday 7 August 2012

Or perhaps not start at all.

My body (or if it's all in my mind, my mind) really didn't want to start this morning.
And it's not as though there was a difficult meeting with my boss, or a classroom full of noisy kids, or a long stressful commute or (insert your personal nightmare here) looming on the horizon, giving me some sort of cause to wish to avoid facing the day.

Just me and my body, and my mind, and the day: currently more than enough hard work.
So, I've fallen slightly further behind on my e-mails, distinctly further behind in the garden (the plants love this weather), and done exceedingly little.  Receiving my week's groceries was the highlight and heaviest workload.
Putting them away was a two-session job, so two hours, including rest, well used up.

I soldered a couple of wires on a defective model locomotive, put a spray varnish coat on a model car heading for my niece and nephews in New Zealand, and chopped a couple of pieces of urethane foam to size, for what I plan to turn into a little window display railway, if I don't grind to a complete halt.
(there's no need to plan for that, because if it happens there'll be nothing *I* have to do about it: one of those self-solving problems!)

The day went by pretty quickly, actually, apart from when the aches and weakness were calling too much attention to themselves.
Most of it, including those times, spent horizontal.

Some other little things done and not done, and thought about.

But, overall, I did so well that I'm going to be allowed to do it again tomorrow.
I don't think you get a medal for that.
Or even "mentioned in despatches", unless you do it yourself.

Monday 6 August 2012

I definitely wouldn't start from here.

I'm trying to do a little more by way of understanding my condition: its origins, nature, management and treatment.

Hmm.  I might have picked something a bit more straightforward. Especially since the CFS itself has markedly reduced the ability I used to have, to tear into research with enthusiasm teamed with a voracious reading habit and an analytical mind.
This has to be tackled at an entirely different pace.
That for one thing.

And then there is the consensus of medical opinion.
Or rather, then there isn't.
Apart from the authorities being tentative, conservative and cautious
(but understandably in consequence not giving those of afflicted the clearest of pictures or guidelines), there are those with firmer, more definite opinions firmly holding that the key issue is psychological, psychosomatic.  And those who maintain entirely different paradigms, some of them pointing to particular chemical processes or cellular anomalies.

Describe these, weigh them, decide between them?
I've only just arrived in this country: I'm a long, long way from mapping it, and through that discovering the best trail for a pilgrim.

I have, however, already discovered numerous brightly-lit signs saying "This way".  Unfortunately they do tend to point in diverse directions, and are often high-charging toll-roads.

This at least is relatively familiar.  I've met it in another country, where various understandings, and interventions and treatments and cures have been proposed for autism.
It's not so long since "childhood trauma" or bad "parenting" were mainstream medical explanations for autisms nature and origins.

No, it's not just a matter of trusting the man (or woman) in the white coat.  They can be drastically wrong from time to time, too.

This could take a while.

Sunday 5 August 2012

Watching the Olympics

I've not watched that much of London 2012, firstly because sports have never been a big thing for me, and secondly because under my current regime, determined more by experiment than by dogmatic imposition, watching TV counts as an "activity" and is under ration, although it is one of the "stretched" activities which don't have to obey the strict five-minute rule.
Unless fatigue symptoms say otherwise (and not infrequently they do) even a whole football match may be possible viewing.
To be honest "watching football" can mean only looking at the screen when the commentator starts to sound more excited: it works.

Some incredible athletes.  A marker for what the human body can be capable of.  
No, I'm not hitting notes of envy, or sour grapes.  Seriously, as far as self-examination holds good.
But as I am, now, I couldn't walk from the changing rooms to the podium and stand on it for three national anthems without suffering badly for the next several days.
That's without doing any event at all.

I couldn't even get to the paralympics to spectate.

Wow, there are some different worlds out there.
It's not surprising some people mainly located in one find some people in some others difficult to understand.  Common experiences and viewpoints help.

Than goodness for internet support groups, where some of us rarities can make  contact.   Otherwise we'd feel even more isolated, and odd.
I just have to make sure I don't overdo it, even there.
Where's my snail lifestyle coach?

Saturday 4 August 2012

I've had this deja vue before.

A day suspiciously like some others.
Not too surprising, and the will be more.  My menu of things to do and see is not that extensive.
No, I'm not going to be thinking "Groundhog Day" any time soon: food disappears from the fridge and cupboards, for example, and goes off if I don't keep myself reasonably organised.
One more item to eat into "activity" time, every day or so.  These little things didn't really come over the horizon in more normal days, being taken  "in passing", but thought and planning comes with a definite cost, now.

And what do I do?  Think.  And think about thinking.  And at least one  level higher than that which can start a tricky spiral if an escape clause cannot be found.
This used to be recreational, and fun, but is now is best avoided,along with other excessively demanding activities.
Except if trying to rest and be generally inactive, physically, this leaves a massive gap for my brain to start gearing itself up to think, lest it get bored.
The normal escapes from deep thought aren't readily available: sport, for instance, or most computer games, or reading...  ruled out by being themselves too active and demanding either physically or visually.

A tightrope to be walked, without putting too much effort into it.
(This working on a budget creeps in everywhere!)
So far I've found a couple of old, slow, simple computers games that serve quite well.   And the marble solitaire, and certain carefully selected bits of model railway work, mainly the mad stuff which avoids the problem of obtaining precision or requiring great concentration.
Some radio listening, though that can fall off the tightrope on either side and become too demanding or not sufficiently distracting.

A few more items to go on the "things to do which don't quite amount to doing things" menu would be nice.
Or I can look forward to a lot more deja vue.

Friday 3 August 2012

Playing limbo, or perhaps "guess the beans"?

Doing things right, as far as I am aware, which involves doing very little.
But that still involves aching arms and legs, which basically complain if asked to do *anything*.
Last night involved a case of "yes, I'll be more comfortable if I roll over, but do I want the pain that getting there will involve?"

Yes, doing less, and yes, I'm doing whatever I do as gently and economically as possible, but I'm still getting the impression that the the bar is being lowered on me.
The temptation to rail against the five minutes in an hour, or to break that rule (it's only a guideline, really), is less that it was.  Any time I do stop, solidly, my body likes it.

And that's not just laziness because my mind is having its own battle with frustration, and wanting to be busy.
Most of it accepts that the current duty is to rest and recuperate, to give my body a chance to find the resources to start making itself stronger.
But there is definitely a loyal (so far) opposition which rarely ceases making its own perspective clear.
 "Let's get busy: you'll feel so much better for knocking things off your 'to do' list, less of a nothing and a nobody."
A dangerous subversive voice, too, which suggests pushing too hard just to "show everyone that I am really ill, and do fall apart if I'm active."  This, to counter the niggling nag that keeps suggesting "this isn't a real illness, you're just lazy and dodging work."

No, I don't actually hear them and I'm not mistaking them for separate bits of personality.  But I'm used to considering arguments and situations from a range of perspectives, and that's not going to stop any time soon.  It's more a reassurance than a danger, even if it can be tiring.
I'm rather more concerned about being comfortable and easily dogmatically certain, and wrong.  I'm not quite ready to throw critical thought and doubt overboard.

Thursday 2 August 2012

In the News.

Not me, but my condition.
In a nice, confusing BBC article.
Chronic fatigue syndrome: Brain training is most cost-effective treatment
(not so much confusing to someone who doesn't know enough: the more you know, or think you know, about CFS /ME, the less clear and the more ill-defined the article becomes.

Enough to make one, or at least me,  think hard, even when I should be resting.
Describing CBT, Cognitive Behavioural Therapy, as "brain-training" is bad enough: it gives the impression you just need to play some of these "improve your IQ" computer games.

That's before what isn't stated, that there is very good, good, indifferent, bad, and downright harmful CBT, depending on the practitioner, their technique, experience and mindset.
I've experienced some of the range of it in my time, connected with my Asperger's and depressive illness.
A lot can go wrong if an unhelpful paradigm is lodged in the *practitioner's* head.

Not quite the article's fault, but part of the confusion (and argument) comes from different groups using the same words with different  meanings.  Not helpful for someone who is ill (and doesn't have tons of energy any more to investigate and assess) and wants the best advice, and not quackery or medical in-fighting.

This article has had me thinking too much (given fatigue issues)today.  About epistemology, essentially.  Who can you trust for information, to know that it is reliable?
I caught my parents lying to me about Father Christmas when I was five or thereabouts: traumatic.
Later it was teachers, text-books, history as "popularly understood".
I learned to cope, but also not to trust unthinkingly.

My CFS is  different from getting my Asperger's diagnosis, though.
I don't have the resources to study, research, evaluate now, the way I did then.  Everything is tiring.
Even reading.
I live with a thousand friends who are losing their ability to communicate with me.

So "tearing into" the topic of CFS as I did with autism (350+ pages of solid information absorbed in a weekend) is not now an option.
Another in the catch-22 family, I suppose.

I've gone direct, and sent an e-mail to one of the professors named in the article.  That was a good proportion of my "five minutes an hour" used up for today.
Time will tell if it was time well spent.

In one sense I'm not short of the stuff: I'm not exactly going anywhere, just at the moment.
But at five minutes in the hour *top* speed, things happen slowly, and even small things clamour for their share of limited active time in the day.

This blog's interesting, there. Tiring on the eyes somewhat, but restful on the mind.

Wednesday 1 August 2012

"Look on the bright side."

My cleaner was just  a bit surprised, today, at how little of what she had cleaned last week needed cleaning again (we are still working on some bits of the house that have not had attention for "some while".
(The Holmesian suggestion that the depth of the dust is part of the filing system did not pass muster.)

There's a reason of course, and it's not because I've been doing lots of cleaning as well.  Rather, that I've been doing very little of anything ever since I had my trip out, and such masterly inactivity doesn't generate that much dirt or mess.
The little patch where I have been disassembling and rearranging a small radio-control car shows how much mess I could make if I was operating at anything like normal levels: little patches of cleverly contrived order emerging from seas of surrounding chaos would be the historic norm.

This semi-hibernation is also not too bad for budgeting.  My car has not had any new petrol since April, possibly since March.  Shoe wear is minimal, too, and I'm hardly affected by passing seasons or fashions as far as clothes go.
Even my book-buying has dropped right off, since I cannot read for any length of time.

Yes, definitely a bright side.
To a very limited, uncomfortable and generally unsatisfactory lifestyle, seen from almost any other perspective
It is, however the lifestyle I have, so I try to see it from within the playing field I currently have to work with.

Swapping imagery, a very small canvas does not admit of massive  expressive brush strokes.  If a picture of some merit is to be painted on such, different techniques are required.
(And no, not exquisite miniaturism: that pushes the analogy too far,  and would take far too much effort and concentration.)

Stringing a few words together, perhaps.
or a few pieces of wire, balsa  and plastic.
It must be a lifestyle since I'm alive and doing it deliberately.

♞ What happened?

This for Tuesday 31st August.
A definite black knight day as it mostly went in a blur.  Brain fog, it's commonly called.
The day was spent principally horizontal, recuperating from...  well, what exactly?  I hadn't done anything especially demanding, not that I can recall.

Lets see how today goes: will I still need to play "catch up" in a race with an invisible opponent?
(Who is probably using a taxi.)