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.
Chronic Fatigue Syndrome in someone with Asperger's Syndrome. You've got to laugh. Or you'd probably scream.
Showing posts with label Chronic Fatigue Syndrome. Show all posts
Showing posts with label Chronic Fatigue Syndrome. Show all posts
Thursday, 1 November 2012
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!
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."
"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."
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.
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.
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.
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.
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.
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."
Wednesday, 26 September 2012
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...
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
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.
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.
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.
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.
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.
"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.
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.
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.
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... |
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:
http://www.bbc.co.uk/blogs/ouch/2012/09/boccia_a_sport_for_all.html
"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.
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:
http://www.bbc.co.uk/blogs/ouch/2012/09/boccia_a_sport_for_all.html
"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.
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.
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...
...no, 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.
(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...
...no, 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.
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?
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?")
http://www.bbc.co.uk/programmes/b01mddl8
(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.)
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?")
http://www.bbc.co.uk/programmes/b01mddl8
(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.
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.
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.
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.
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