Saturday, 30 June 2012

"Careful, lads, it could be a trap."

Which is of course where it becomes double-edged as soon as you wake up feeling better than average.
Not better than the average human being, merely better than the run of fatigue, pain and brain-fog filled days that have gone before.

A serious temptation to celebrate and *do things* follows almost immediately.  Just because they seem delightfully possible, and because there so much that has been put off or abandoned that could be usefully done, on this fine day.

It's a trap, I tell you, but how many films have we seen where characters (often minor, disposable) refuse to heed the warning or follow the sensible advice, and just don't stay where they are or don't leave that package alone, or any variant out of dozens.

Falling for it in this script doesn't generally mean getting written out, or off, even if one is wearing a red top; it just means getting reminded once again that there are penalties for crossing almost invisible lines.
My Aspergic side butts in here to remind me: "just like social interaction, then," and is not far wrong.  Spotting these booby traps, learning to manage chronic fatigue, requires a whole new set of acquired skills.  Acquired through the painful accumulated experience of setting off boobytraps, mainly.
There are no up-to-date, accurate and comprehensive maps or guidebooks.
And studying and learning new skills requires concentration and energy.
Catch number whatever.

Good game.
Next week it's pogo-sticks in minefields.

Friday, 29 June 2012

"This is your zombie, speaking."

It feels like it anyway.
Today I've been pretty much as much a puppet with cut strings or a zombie as I've managed in the last eighteen months, but without doing anything in the way of excessive physical activity, though getting up, getting washed and dressed and having breakfast did take place as an event: in three distinct stages with intermissions.

No, the new discovery today was that the invisible vampire that sucks all the life out of me whenever I take physical activity beyond its (miserly) daily ration has a cousin.

And that my (miserly) daily ration of available energy has to cover the powering, processing and coping with emotions, too.  Good and bad.
Lest this new relative lay me flat out for days with the life sucked out of me.

I'm not usually an emotional chap, and I wasn't desperately so today.
But I had my cleaner starting, and was therefore a bit "on edge" there: people with Asperger's aren't on the whole good with change, or with letting people into their private space.
I can do it, but I knew from my pre-CFS days that it does take a bit of an effort on my part: I can't be totally relaxed about it, and I hadn't made the important connection between that and CFS.

And then came the phone call: the copy of consultant's report that I sent to the DWP has been accepted as enough evidence, so that I won't be hassled over benefits, or made to do any paperwork or interviews for a whole year.  Very good news, if I don't reflect too much on how the consultant described my state of health.
That's when my body really started shutting down and refusing to take orders.

Held tension eats up energy.
Stress and anxiety eats up energy.
Released tension and positive emotion uses up energy too.

Something else to think about now when budgeting from my ration book.  "Can I afford to get excited about this?"

Good job I'm not prone to great highs or lows, then.
I shall continue quietly to enjoy my trains.
After all, finding bits of fun is a resource not to be despised, lurking vampires or no.

Thursday, 28 June 2012

♞ "Not Tonight, Josephine."

Sick headache day, with the tinnitus screaming in both ears.
No clever observations or words easily within reach and I'm not inclined to fight for them.
Going lie down and... not much else.

Marked the title with a little symbol. ♞  That will help me track how often I have these days for better, or worse.

Wednesday, 27 June 2012

"Across the Wires..."

"Across the wires the electric message came:
'He is no better. He is much the same.'"

By Alfred Austin, and he should have been ashamed, but probably wasn't., as England's worst ever Poet Laureate.

"No change" is going to be the most common report, even if change for the better is most profoundly to be desired, and change for the worse currently more likely than that.
So it is still an alien and unfamiliar world in which I find myself, with rules to be discovered, and far from all of those written down*.
Having found myself navigating and negotiating an alien world for the whole of my life a new one is not perhaps so profound a shock as it might be to some. The "normal" world is pretty much that for someone with Asperger's syndrome.
But neither is going to go away or modify itself for my personal convenience anytime soon, so such have to be coped with even if they are not the worlds I would have picked. Or are incredibly frustrating.

Challenge for today: try to get used to the idea of having a cleaner.
I've never had one. With my particular Asperger's my home is very much my personal space, a secure shelter where can recharge from engaging with rest of the world. I can be (a bit) adventurous given a secure base. For me a shared house doesn't really provide that, as I found on the few occasions I tried such, of necessity. That's for one.
And I've always rather felt that one had to be rich, lazy or incredibly busy to have a cleaner: a not-well-examined thought now up for re-evaluation. I'd not really thought of chronic illness. Some adjustment to conscious values and unconscious feelings seem in order.
I'm definitely not rich, or lazy (though I know I could appear so to the uninformed, doing so little) and busy?
Oddly yes, incredibly so. In terms of things to do and resources available to do them.

Alien world indeed, Even if getting (horrifically?) familiar, being the same day by day...

*Unwritten rules for professions, customs, relationships etc. would be so much easier if they were down in black and white, but it might come as such a profound shock to have them dragged into the daylight that they would not long survive unaltered from their shadowy forms.

Tuesday, 26 June 2012

"The Train Now Standing..."

... at platform one isn't going anywhere for a while.

I didn't get to the plants for the hanging baskets yesterday, or today.
My body was giving definite hints about other priorities, such as getting horizontal and doing very little.

I still need to work (or not-work) on getting that much rest so as to be ahead of "fatigued", with its punishing payback.  From there I gather it's a matter of staying in the good zone, making fewer demands than the body can comfortably meet.
That's theory now, even if it makes sense.  I haven't got there, yet, though I've now a nice little kitchen timer/alarm for marking out tiny rations of activity.
It is definitely like sunbathing: by the time you realise you've overdone it, you've really overdone it.

The other train arrived in the post today.  Via eBay and Germany. A part-broken toy train, thirty years old.  In need of some restoration and playing with.
This could also be overdone, I suspect, but a bit of finding fun, when fun is far from easy to come by, is important therapy, lest the daily grind, boredom, pain, discipline, frustration... (pick a few, or all) turn into a mood nosedive.
That's my excuse anyway.
"It's never too late to have a happy childhood".

But I'll make the trains better, slowly.
And have fun gently and undemonstratively.
Demonstratively would cost too much.  There are limits.
Picking a careful, measured path, again.

Monday, 25 June 2012

"I have a cunning plan."

Just as well, really, when getting up is no longer an event essentially noted in the passing but a project, and one with distinct phases to be allowed for and managed.

It appears as though getting up, at least for now, needs to be scheduled to take place across the majority of the morning.
Out of bed and bathroom phase 1.
Return to bed for at least half an hour for muscle relaxation and listening to radio.  Note that the end of the world hasn't happened here, yet.
Bathroom phase 2.  Let the shower do most of the work.
Dress sufficiently but easily so that if opening the front door one is only going to be in trouble with the style police.
More time horizontal until tackling the stairs and making breakfast seem like reasonable propositions....   And so on.

Actually getting anything done in a day, as opposed to getting through it, that rather comes under the heading of "luxury extra".
Except that without some measure of budgeting luxuries first, each day would merge indistinguishably into the next "in this petty pace from day to day, To the last syllable of recorded time."
Or feel a good bit like that, anyway.
This blog helps.  It's a low energy demand, I'm finding.  And is a little something different each day.

Optional extra today: put some plug plants in a couple of hanging baskets.  This afternoon, if it doesn't seem like a strain.
I'm going to lie down now, and think a little on the "minimal effort" plan to achieve that.  Very small scale logistics.
(The other low effort route of "throw money at it" and just buy in some new ready-planted hanging baskets is not an option.  With CFS that sort of budget is often very tight too.)

Sunday, 24 June 2012

Thought For The Day...

... "Let's have a quiet one".
And then maybe another one of those.
If I can get enough rest I may eventually get ahead of the fatigue and start managing the energy/fatigue budget for the condition from credit, rather than, as it seems at present, continually having to play "catch-up".

But I have been doing less and less, demanding less of myself in terms of activity and effort.  To the point where the things I'm not doing would be a major cause of energy-sapping anger and frustration were I not managing a good degree of detachment and acceptance (with a twist of black humour).  Or am I?  Is it getting bottled in the subconscious?  I don't think so, but "I" is such a complicated concept.   Hmm.  That's for another time, perhaps, but not for tossing aside completely.

Meanwhile, the conclusion would be that I'm trying to hit a moving target: the line of sustainability that I'm trying to get under is dropping like a limbo pole.
OODA loops: I have to get inside my enemy's and move first.
I've been behind on orientation: "If you can keep your head when all about you are losing theirs, consider that you might not have fully appreciated the situation."

OK then. To outwit this enemy we must... do nothing.  Really nothing, or as near as we can get without going mad.
This will take some planning...   Without expending tons of energy on the planning, of course.
I'm not going to fall into that simple a trap.

A quiet day it is.

Saturday, 23 June 2012

Thinking about thought...

(On a day when I found a new variant on brain fog: spooning hot chocolate powder into my teapot.)

I'm told I think too much, a proposition to which I've given considerable thought.  Yes, you can overdose on thought, but I'd rather that risk than what I'm sure is the more common condition: having it as a deficiency disease.

Thinking is in part a new game now I have CFS.
We'll leave the "who is doing the watching when I'm watching myself watching myself?", I think.  "I" gets to be a very complicated term, for all its typographical simplicity.

Is my thinking and thought-processing affected?
Most decidedly, but not as a general dulling of intellect, or even with a broad level of cognitive function tracking, almost reporting, the current fatigue.

I find it's my almost reflexive activities that get hit most.  The things that would normally get done with only the lightest touch of forebrain control.  For example, aking breakfast:  coffee can end up sprinkled on the cornflakes.  Milk can be got out, and put away without being used. Toast buttered, and then buttered again on the second side.
Sequencing goes wrong, on the simplest of things.  Not constantly, but  that very unpredictability makes for a trap.
Suddenly I'm more clumsy, more stupid, more forgetful than I used to be.
Paying careful attention to the little things to cut down the risk of risk silly things happening is possible, mostly.  At decided energy cost.
And getting angry at any mistakes also drains, and needs to be avoided.

But sharp thought, sitting down and thinking thought, that's still there if there's enough energy to do it, and my body isn't screaming to go into shut-down mode.
There, in lap-top terms, the CFS hasn't damaged the hardware or the software.  The need to go into standby mode is triggered by (dire) battery levels.
Which is in one sense reassuring.
It's "only" no energy, not brain damage.
Day-to-day, without careful management it might not be so easy to spot the difference as judged by the effects.  Bad decisions get made when tired.
Not least about whether one is dangerously tired and not thinking well.

(I think this says what I want to: I'll look at it again tomorrow.)

edit: it seems to.  I'd add as brainfog examples hitting unintended keys on the computer, especially on things like drop-down menus.  Not good on cash machines (ATM's).

Friday, 22 June 2012

Then, over the hill, the cavalry...

Well, no, not exactly.
But following the less-than-welcome phone call two days ago (see previous post. "... but no help came..."), I got another unexpected phone call yesterday morning.

Better, but very unexpected.  An occupational therapist on the local team wanted to come and see me that afternoon.

Now, advice and support is good, and this lady was very nice, very supportive and very informative.
And will be coming to see me four or five times more (on current thinking).
She was also able to reassure me that my basic thinking and approach to date has not been significantly wrong.
So far, so good.  Very good and helpful, in fact.

You can feel the "but... " coming, can't you?
Is this just a case of Suspicions Minds?
(...We're caught in a trap. I can't walk out... (or anywhere, much.))

It's only two things: one not certain, the other as clear as can be.
In the letter I had from the consultant who saw me, it stated that it was unlikely that individual OT support would be available, given current demand/staffing levels, and thought that group meetings would be available, not starting before September.
But now, given that NHS resources have hardly leapt up, have I been assessed to be rather further up the priority scale than I had thought?  That's worth a thought.
Especially when it was made very clear yesterday that, despite my considerable moves towards a small area, low impact, restricted but relaxed lifestyle... I've still got a lot of activity downsizing to do.  I'm still doing too much, it seems, given the symptoms I've been reporting.

That doesn't augur well.  What else to throw overboard?  To not do?(See Flotsam and Jetsam, this month, again).  This will be for discussion between us next time, after I've recorded some activity/rest time sheets for a week.

But I mean, I've hardly been doing Jumpin' Jack Flash impersonations or running with Olympic torches.
I am in practice housebound, barring rare exceptions which are going to have to be even more exceptional.
But just today, and OK I am feeling distinct fatigue symptoms anyway, just from having had a visitor for an hour yesterday,  I feel a bit like a dodgy Eurozone country faced with more austerity... More?
"Please Sir, I don't want any more..."

Pause for thought.
New message to self: you don't know of a better 'ole, so take your medicine (literal or metaphorical) and soldier on.
If you can't take a joke you shouldn't have joined.

You know you have CFS when you watch the sweetener tablet drop into your nice hot steaming mug...
...of tomato soup.

Thursday, 21 June 2012

..but no help came, only more Orcs.

After thirty minutes of light gardening, yesterday morning (yes, a bit too much, but the window of dry weather, and the state of the garden, made being totally sensible impossible,) I was in dozing rest mode when I  got a phone call which wrecked the rest of my day and has probably done for the rest of my week as far as any productive activity goes.  It doesn't take a lot when your store of spare energy and concentration is a well-scraped barrel at the best of times.
(I have bright clean wood showing, approaching gouges in the staves).

Last June an ATOS medical passed me 100% fit for work, with 0 points on questionnaire and medical.
In November 2011, my tribunal appeal was granted, my ESA benefit was restored and I was placed in the support group.
In Jan 2012, a new medical questionnaire arrived in post (I really felt "got at" with that one. Shades of Irish EU democracy: we'll keep asking you until you give the right answer.)
Now I'm being moved back to the Work Related Activity Group, apparently, on the basis of my questionnaire answers (how they managed to infer that as likely to be correct on the strength of my replies, I've no idea.  My health has been worsening, not improving.)

Oh well, more hoop-jumping seems required, and since the odds of a bureaucracy waking up to the absurdities of its own bureaucracy are pretty poor, I must summon up the wherewithal to conform and comply.
From where?

I'm hitting "Catch-22"-like catches again. I could better make a presentational job of how ill am, how limited in ability, if I weren't so ill and limited in ability.
I can do it, of course. I just have to throw almost all other activities overboard, and borrow from the future energy ration, storing up days of feeling terrible once I've cleared this hurdle.

Or if I do a good job, will the opposite catch apply and it be taken as evidence that I could quite clearly do an office job?
(If you don't turn up for a medical the default assumption is that you are not taking it seriously, not that you are too ill to attend...)

The phone call itself, in its managing and in absorbing and processing information wiped out any ability to do anything useful for the rest of the day, I'm not good today.
No reserves, and reserves are called for.

Never mind. There appears to be no better'ole, so soldiering on it is.

A key line from "The Battle of Maldon".
"Will shall be the sterner, heart the bolder,
spirit the greater as our strength lessens." (Tolkien's translation).

That or curl up under the duvet and eat chocolate.

Wednesday, 20 June 2012

Aftermath, but not Armageddon.

Well, that wasn't much fun.
Even less so than anticipated.
Pacing, pacing, pacing.  Knowing your limits for activity and stamina and respecting them.
Good groundwork for CFS, but even knowing that, difficult to keep to.
Unfortunately I'm an addict.  I've a long-established "doing things" habit.
And it's not easy to give it up.
Partly it's physical reflex, habituation of mind and body, but there can be psychological factors too, tied in with identity, purpose, status and self-esteem.
"Who are you?" so often links to "what do you do?".   That can need rethinking when the obvious  answer is from the "not much" family, and isn't attached to a career, sport or major hobby any more.

Chronic Fatigue Anonymous?
"Hello, my names Chris and I'm an addict... I've been working on not overdosing on activity for eighteen months now, one day at a time.
Sometimes I slip, and do some gardening or cleaning.  I know what it does to me, but the need just gets too great.  Slowly, I'm learning..."

Trouble is, of course, going to meetings and in my case talking to people is high-drain activity in itself.  Catch 23?   Anything aimed at helping people with CFS also tends to be activity, and should be very strictly on the ration.

Today, I'm just running on a bit more in the way of aching muscles and jelly legs than the level of such that I can get to if I'm good and very self-limiting.
On a good day it's a bit like having 'flu, without the raised temperature, (though feeling hot or cold independent of the actual temperature, and suddenly pouring with sweat for no reason are common symptoms.)

At least one more extra-go-easy-day is called for.  If I can do it.
It's a matter of prioritising.
Am I this far gone?  

Tuesday, 19 June 2012

OK, the invisible vampire got me.
I'd braced myself for that.
But his inviting an invisible boxer to work me over in the night was a bit much.
I'll file yesterday's activities, then, under "don't do that again unless you absolutely have to", but note both that such is available to me in an emergency and that I am in no way simply being lazy.

I know that anyway as there is so much I cannot do, but every now and then the doubt arises and I think I ought to be doing more, trying harder.
Maybe I need a lifestyle coach.  A snail, or a tortoise, perhaps.
As a pacemaker, in particular.
Since trying hard is counterproductive, it must be about trying hard not to try hard.
Which sort of makes sense in any universe where Gödel’s Incompleteness Theorem works.
Where's Yoda when you need him?

Ah, well, one generally has to play the game by the rules and self-awareness, acceptance and pacing seem major ones for CFS.
Perhaps there's a bright side.
With enough practice I may be able to sloth for England.
(Despite the number of dedicated amateurs the country already has?)

My body is telling me to go and get a lot more training in.
I'm going to listen to it.

Monday, 18 June 2012

The Invisible Vampire.

I'm going out, for the first time in about three weeks.  No great expedition or adventure, but there are some things that can't be done by e-mail and eBay.

With my CFS (we can vary a lot one from another, and even one's own isn't inclined to be decently consistent) I can put together about half a day's normal activity: driving shopping, meetings, but at the cost of about three days being like a puppet with cut strings.  Borrowing energy from the future ration at an horrific rate of interest.

The odd thing is that it's not exactly time-limited (at least currently: see first parenthesis).  I can hold myself together as long as I have to.  Then, exactly as the front door of my cottage lets me in, this invisible vampire steps out and sucks every last bit of energy from me.   Payment time starts.
Being this free with energy beyond the duly budget is costly and therefore turns into a very calculated excess.
Do I have enough real solid need to justify behaving extravagantly?

Workarounds, easy ways, and defining activities as simply unnecessary are all preferred  substitutes.  As a consequence of my Asperger's I'm not well-equipped with a large network of contacts I can call on, and as it happens my family are scattered around the globe.
Despite some help, largely from neighbours, very much it's "if I don't do it, it doesn't get done."  
On the other hand I don't have children, spouse, social life... to make continuing demands (often only normal life's expectations) that are near-impossible to meet from within the depleted resources left by the CFS.
Running on empty.  Fuel warning light on.
The vampire awaits, on my chosen path for today.

I try not to pick that path too often.  It's my neck.

Sunday, 17 June 2012

Catch 21

Not quite Catch 22, but a day when the CFS/ME is really telling me what  it's all about... is one where I feel the least inclined or able to tell anyone else what it's like.
(C. S Lewis:'If only my toothache would stop, I could write another chapter about Pain.")

As a corollary, gaps in this (intended) daily blog may perhaps be read as comment on the effect CFS can have on the smallest degree of functionality, rather than as evidence of boredom or lack of commitment.
On the really bad days I won't be sat here, typing...
There's a bit of Asperger's inflexibility at work there which sometimes rates as a positive characteristic.   I don't easily put down things I've promised others I'd do.

Today's not bad, so far: mild headache and a touch of a particular type of "brain-fog".  Until I caught myself buttering the second side of my toast I thought I might have rested up enough to have earned a good day.
CFS is a condition where "beware optimism" can apply.  A too-positive interpretation or hope often contains a mirage, leading unwary travellers into trouble.
For some that's going to be a non-intuitive approach that takes some acquiring; me, I've always had some suspicion of hope and optimism:
"I don't want to fly in a plane, or cross a bridge, that was designed, built or maintained by optimists. "

Meanwhile, Keep Calm and Carry On.
There's stuff here I want to expand on, but not today.  The CFS is starting to tell me to stop and do nothing for a while.

And a good bean-bag is a friend:

Saturday, 16 June 2012

Flotsam and Jetsam

Yesterday provided me examples of  Chronic Fatigue Syndrome and "lightening ship", jetsam being the things deliberately thrown overboard and flotsam the stuff just washed away.

And without the first  I suspect there will just be more of the second, more messily, though deliberate abandonment doesn't come that easily.
It's been an eighteen month process, and I'm not sure I've finished shedding, yet (looking round, rather concerned, for anything else remaining, not actually vital, that could be  pushed overboard).

Paid work had gone before the CFS appeared* due to pre-existing illness.  Taking my trains to model railway exhibitions went first: turning down invitations was hard when it was a big area of fun and reward, and a good part of my social life in terms of meeting people.
But the model maintenance work, the travel and the being "on show" was clearly becoming too much of an ask.   Splash.

Voluntary work at two youth-clubs for teenagers on the autistic spectrum.  Splash.
Keeping the garden in order, (it has trains too).  Splash.
Two committee places with Cornwall council, contributing to their development of services for autism.  Splash.
Standards of housework... cut back
Internet groups and forums... culled.  Splash, splash.

Some activities simply got washed away: reading is far too tiring to pursue in any degree, and this in a house with over a thousand books.
Similarly most computer games.

It's becoming a lighter ship, but a very bare one.
Meals have got to be quick and easy to prepare.
Clothing, "low attention": sweater and jogger bottoms, usually.

So what do you do when you can't really do anything?  It's a challenge even if domestic necessities eat up far more of the day's energy and concentration than might be conceived.

Old Punch cartoon (and not from  Satchel Paige at all!)

Vicar's wife: (sympathysingly) "Now that you can't get about, and are not able to read, how do you manage to occupy the time?"
Rustic man: "Well, mum, sometimes I sits and thinks; and then again I just sits."

There's certainly room for more of that, but I've long been accused of "thinking too much".
I've given that charge considerable thought, naturally, but have concluded that while overdosing on thinking is entirely possible, far more often the condition is encountered as a deficiency disease.
I know which risk I'd rather take.

Thinking now comes with a few extra traps to avoid:
brooding, and dwelling on the negative, of course, and handling the decided frustration of hitting upon plans and ideas that cannot be followed through.
I may have an idea or two about that.  And I am still afloat, for now.

(*possibly: it gets complicated: was "burn-out" a precipitating factor, or a precursor?)

Friday, 15 June 2012

Where am I?

"The regular early morning yell of horror was the sound of Arthur Dent waking up and suddenly remembering where he was."

I don't exactly scream, but then I'm not two million years away from the nearest bus.
On waking I just ache in my arms, shoulders,  back... and have a dull slightly sickly headache that follows me all day, most days.
From this I have to build, or at least stack one day on another.

I'm fully aware that I must neither moan too loudly, nor drop into self pity.
I have a roof over my head*, access to clean water, I can afford food and heat, and no-one is shooting at me.
I am better off than millions and millions of people.
Let's keep that pinned somewhere in mind for a sense of proportion.

But this isn't exactly where I was aiming for, either.
Not Shangri-La or Xanadu.
("Don't you just love it when a plan falls apart?", as Hannibal Smith never had to say.)
I can't do paid work, I've had to give up my volunteering, I can't even pursue my hobbies effectively.
I live with over a thousand books that I can't read: the eyesight's there, but the concentration isn't.  And there are enough sharp bits of the brain operational to really notice the bits misbehaving, and get frustrated by them.

So what's the approach?  I've never got the hang of plucking optimism from nowhere and castles in the air, to me, have foundations that don't meet building codes.

It is somewhat old fashioned but I have found nothing to out-perform "soldiering on": as perfectly exemplified by the drawings of Bruce Bairnsfather  in WW1.  Above all, the "better 'ole".

Says, if not it all, then a good part of it.

Today I shall try for a little housework, and maybe a smidgeon of model-making.  (A cliff needs creating, as it has for a while).  I will need a lot of being horizontal and inactive.
Let's see if this plan holds together when it encounters reality.

 (*much needed, given the weather forecast, with flood warnings.)

Thursday, 14 June 2012

Walk like an Egyptian

Walk like an Egyptian.

Review of Wed: nothing much got done at all, except starting this blog. The wisdom and practicality of that awaits the verdict of the future.

Today starts with incredible familiarity.
Walking like an Egyptian.... well, like a mummy lurching around inside a pyramid, anyway.
Yes, the sense of humour is holding up, but I was very much struck at one point that I am now simply moving in a cycle through four rooms, (five with bathroom.)
As convoluted mazes go, a pretty small one.
Given the state of my symptoms I haven't been outside in two weeks, and it could easily hold for the next two or more.

This a very small world in which I find myself.  There's little point in taking a taxi and feeling dire somewhere else: it's cheaper at home.
At least with my Asperger's I have a fair range of "being alone" skills: CFS hitting someone with a lively social life would, I suspect, be having even more of a nightmare.  But the CFS is reinforcing my AS traits in some areas, or simply removing the possibility of making the effort to move closer to mainstream social expectations.  I'm used to stepping outside my comfort zone to let people stay in theirs (over eye contact, for instance) but that's less and less possible, now.
And expecting most folk to make a reciprocal move?   Largely a forlorn hope in my experience,  unfortunately.

Ah well.  If the world was perfect... but that's been dealt with.
Now for a couple of hours of rest, and some soldiering on.
Carry on Lurching.

Wednesday, 13 June 2012


As the punchline from the old Irish joke has it, it would probably better to start from somewhere else, but what can one do?

Why now?   I now need some sort of record of my days, lest they merge into one.  What that homogenised average would be I don't want to think about, but have to.

And today my head is in a place where other distractions or workarounds don't seem to be taking.
"Today is the first day of the rest of your life": that bad, huh?
I managed to get up, get washed and dressed, and then had to lie down for three hours.  This in consequence of attempting fifteen minutes of light gardening yesterday.  Such is life.  My life currently, anyway

Welcome to the world of someone with Chronic Fatigue Syndrome (or M.E. if you prefer) as observed by someone with Asperger's Syndrome and a history of depressive illness.  Fortunately also with a very functional (if sometimes black and twisted) sense of humour.

Three years ago I could go to the beach at Bedruthan Steps (probably the best beach in Cornwall:) for fun, despite the impressive cliff stair.

Those tiny dots on the shoreline are couples: "the crowds".   The beach does not exist at high tide.

Now, except on a very good day, I wouldn't even try to drive to the car park at the top.
Three years ago I could spent a morning dry-stone walling with no ill-effect except a desire for a swim, and for lunch.
Now, putting away a week's groceries (delivered) can leave my arms aching, and may have to be a two-bites job with hours of rest intervening.

No, I'd rather not be starting from here, but whoever said the world has been arranged for my perfect personal convenience?
In my perfect world I'd be happily married to Angelina Jolie, which would hardly be her perfect world, except in mine it would be.
Which just shows ideal or perfect worlds don't really cut it, logically.
Let's deal with the one we've got.
A day at a time.