Monday 29 October 2012

I Didn't Reckon On This

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

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

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

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

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

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

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

Friday 26 October 2012

Bumping along the bottom.

And occasionally the bottom gives way.

I'm still running on this new, lower, level of capacity and higher level of fatigue.  I'm curious about that, but not in a position to get excited about it.

I did get news from the ME services, today.  My occupational therapist should be able to come to see me in about three weeks...  or so.
(It'll all be over by Christmas?)

Still Halloween unfinished... that should be the priority for tomorrow, I think.
("Don't you just love it when a plan falls apart?" as Hannibal Smith never had to say in the A-Team.)  
Perhaps I'll light the stove in the kitchen to keep me there for more of the day.   That could work.    

I've not really got any longer term plans except the vague strategic aim of digging in and surviving, by whatever means come to hand.
I may need something more if I'm likely to be stacking up a couple more years of this at the least (rough estimate).  Something else to ponder during horizontal quiet times, but at first thought I'm not sure i have anything obvious to plan for.   Yes, that does need *more* thought.

Wednesday 24 October 2012

I left the house today...

An expedition.  All the way to the village shop and back.  Wow.

"There and back again"
It takes a fair need to get me out of the house these days.
Not that I'm so attached to my place, or fear outside.  It's just that it takes so much energy, which I don't really have to spare.

However.  I made the other cardboard boxes today.  And addressed them.  The Christmas present for New Zealand could be finally be sent.
Only about a year behind the original schedule.   It was worth the excessive effort, as measured against my daily budget, to see that task done.  
If I've calculated correctly I'll just be a bit rough tomorrow, and back to whatever is currently counting for normal by Friday.
That's for noting, as it will feed into plans for going all the way (eight miles) to town somewhen between now and Christmas.  That's going to cost days...
Best done just after the week's food has arrived, I think, or I may not be in a state to order or unload the same.

These little molehills trying to act like mountains.

Monday 22 October 2012

Sense of humour: intact.

Norse fatalism:  going strong
Buddhist detachment and calm: holding out so far.

And there's food in the cupboards, fuel in the garage, and water coming out of the taps (only when turned on).

I'm just taking a quick stock of resources since things aren't getting any better from the new low, and a bit of siege mentality maybe required.

Today I made a cardboard box.  Custom, to fit one-third of the goodies going off to New Zealand.   That was about it for accomplishments above and beyond daily necessities.
Not down to zero yet, but the "I did it"s are getting measured in very small increments, now.

And just looking at the Halloween train reminds me how much better I was twelve months ago, and how much I could do.
But I am determined not to give up on that, or on doing my part for Halloween.
And determination is a sort of short-term resource, though that has to be paid for several times over, if spent.

Which leaves one more.  I could always get angry.  Very good for a short burst of activity when all else has failed, but I suspect the price would come even higher than for cold, determined effort.
Let's leave that one in last reserve.  Very last reserve.

Zaphod Beeblebrox: "Ford, how many escape capsules are there?" 
Ford Prefect: "None." 
Zaphod: "Did you count  them? 
Ford: "Twice."

Friday 19 October 2012

A distinct hiatus.

.. as one or two people have kindly contacted me to point out.

Yes, it has been the CFS interfering with me writing about my life with CFS.  In some respects an eloquent silence.

Again, I'm feeling like the bar has been lowered on me, once more.

My jelly legs have spread to my arms and my... torso
I'm also noticing a new form of vertigo sensation. Nothing too severe or debilitating, but it's a short jerky feeling as of a small boat in a chop, and most apparent when I'm sitting down. Odd.

Whatever I try, I don't seem to be able to get enough rest to quieten things down to my "normal" state of CFS as of few weeks ago. And this is with my low level of activities scaled back, and no wild (eg to ASDA) outside  expeditions.
Thinking is pretty clear, but in under five minutes with a craft-sized paint brush my hand begins to shake.  This is new, and not good.
(I'm finishing off the Christmas present for New Zealand two minutes at a time.  It's almost done, thank goodness.  I'm pretty happy with that.)

I need my occupational therapist back, but I have no date for that, as she's still ill! (no, not with CFS.)

Yes, I'm eating,
yes I'm up on vitamins,
yes, I've been getting a ration of sunshine.
My sleep is varying from no worse to slightly better than usual, so no obvious culprits anywhere there to deal with.

Given that, and no immediate action to take,
(My GP is aware, but it's not clear there is anything he can do.)
I'll just be crouching down in my foxhole for a while.

As for mood, it appears to be  holding out.  An odd sort of mix of Buddhist calm and Norse fatalism, I think.

I will try to be more regular in signalling that I'm still here.
Not that I'm likely to be going anywhere!

Monday 15 October 2012

Trains, and coal.

The nearest thing I have to a guru, Mr Rowland Emett, (artist) was once asked what was the purpose, the final product, of his work.
"To bring the smallest smile to the eye of the beholder," he replied.

I can understand that.
From one of the last model railway exhibitions I was able to do:

Yes, I let the public drive the trains.   Children, as here, if they could get their dads to hand over the controllers.

And today I saw the grinning faces of two children at my kitchen window, looking at the little model railway I currently have there.
(I still need to get that Halloween one refurbished)
Their mum read the caption on my CFS Bunny model.

That's what it's all about as far as I'm concerned and that's going to last me several days, at least, outweighing any negative symptoms.  If I keep it in mind it could last me a lot longer.

Thus the trains (which do not run on coal).
The coal was me refilling two coal scuttles, one for each on my stoves.
Yes, do-able.  It hurt.  And I needed about two hour's rest to recover.

So it should have been one coal cuttle and rest, then the other.
Talk about "bitesize"!
A full scuttle, plus a dozen logs provides about a day's fuel for a stove.
But given I don't really get as far as having long periods in the kitchen or lounge in the mornings now, I don't think a stove will get lit until after lunch, and I don't normally have both on...

I think this could be manageable, if allowed for carefully.  It's just a matter of giving thought to something that previously hardly needed it.
Stocking and topping-up the stove was just something done "in passing" on the way to the next "proper" activity.   No longer.  Real activities in their own right .

"Do you have a hobby?" "Keeping the fire going."

Saturday 13 October 2012

Let's stay in this trench for a while.

Options of moving to another trench or digging a fresh one really don't appeal or seem practical.

Here I am and here I stay.   Let's not focus on aches, pains and fatigue... file that under "background", for now.  Take such as read.

(But apart from that, Mrs Lincoln, how did you enjoy the play?)

Today, other wise, then: my plans for the Christmas present for New Zealand have progressed well.  The time invested in experimenting with new materials has paid off in a much easier task.  (Rommel's dictum)

My brother has three children:  

So "My First Driving School" as above now has an extra radio control car on a third frequency and and extra crossover intersection and corner.  The only one in the world.

I should be able to get that posted of next week, one big job out of the way.  (I'd actually intended to give it *last* year, but my capacities were already slipping, throwing timetables off.)

Now, to get the Halloween train running.  It's passed all major checks.  it shouldn't take too many five-minute sessions to get the spiders and scorpions operational.
I still haven't worked out how to survive Halloween itself without taking a big hit... that's something for cogitation in the rest periods.  There's got to be a lazy way of doing this.

I'm not ducking out, though.  That's a policy decision.  

Anything serious on the horizon?   Waiting to hear from my doctor, Christmas has been settled as solitary...  No big moves or decisions to be made just for now.  Subject to surprises.  A holding action.

Thursday 11 October 2012

Definitely a bad feeling about this...

I'm not winning this little passive fight at the moment, trying to out-rest my fatigue.  I just don't seem to be able to rest enough to get back to where I was even a month ago.

Maybe it's a blip, or a bug that's that's giving me a bit of extra load, or subtracting a little more energy than usual.  My doctor's aware, and the county ME service, even though my own occupational therapist is out of action until early in November.

What else to do?  I don't see anything better than digging in, maybe cursing a little, or indulging in some black humour, and carrying on.

Ham and Jam time?
"Hold until relieved, hold until relieved."

That sounds about right.  I have food, water, heat...
(must check oil tank level)

Dig in and wait for Lord Lovat's Commando.
Or a phone call from my GP, at least.
A different sort of battle.  But real close-quarter fighting.

Tuesday 9 October 2012

"I've got a bad feeling about this"

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

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

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

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

Sunday 7 October 2012

The economics of fire

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

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

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

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

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

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

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

Saturday 6 October 2012

Invisible vampire attack.

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

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

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

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

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

Friday 5 October 2012

For Thursday: Drop the Dead Donkey.

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

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

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

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

Wednesday 3 October 2012

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

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

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

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

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

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

How about a brew-up?

Tuesday 2 October 2012

I think I'll sleep on it.

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

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

A 1/4 of my Trazadone Rx turned out to be the titration, but I never did find a small enough Mirtazapine does to lose the unwanted effects.
I still use the Trazadone if I've had several poor nights, which applied over this weekend, to prompt this post.

It demonstrates that poor sleep is certainly not the key cause of CFS: "tired from lack of sleep" is way too simplistic.  Good sleep does not appear to reduce or eliminate any of the CFS symptoms, with the exception of "brainfog" (Or, lack of sleep alertness failure, which being similar in many respects would overlap nicely): same fatigue levels and poor stamina, same muscle aches and pains, etc.
What decent sleep does shift, however, is my ability to cope with my CFS.  The same level of symptoms don't "get to me" anything like as much.   More tolerance, less irritability.

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

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

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

Monday 1 October 2012

A nice, quiet, day.

Or is that more accurate without the commas?

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

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

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

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