"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.

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.
Hmm.
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...

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.

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.

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?

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."

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!?