Review of the year.

It is looking as though this blog is not going to be daily, or anything like it, as initially planned, given teh current state of my ME/CFS.  While I have not given up on that idea yet, finding the energy and concentration, and having anything to write, is nothing like as easy as it was those few months ago.

We shall see.
However, nevertheless, notwithstanding...
My mood is good.  Surprisingly good.

Bolstered by a sense of humour still capable of feeding off the absurdity of it all, my subconscious mind seems to have absorbed my conscious conclusion concerning of the importance of staying a bit detached and avoiding despair, fear and panic.  

Keep Calm and Carry On, indeed.

The physical symptoms and limitations of my Chronic Fatigue Syndrome / ME have gradually become more severe.  Every time a benchmark activity has been repeated, such as a rare, brief, trip to town, I have been of worse performance or paid a larger consequence for making the effort.

"...dropping down the ladder rung by rung"?   

What activities are left to me are slowly needing be scaled back.  It's not obvious day-do-day, but thinking back in three-month chunks it is quite clear.  

I can have no real plans for next year.  It really is pretty much "hold until relieved."

(ham and jam, ham and jam?)

No panic, and if a better move or situation shows up, I'll go for it.

If not, I'll make the best approximation I can manage to snuggling down where I find myself.

Chris.

A whole two weeks, and more.

Or should that be "a state of abandonment"?

I keep looking at the shortcut button for the blog, and realising I just don't have the energy to produce anything worth recording or reading.

But it's not abandoned, and I want to get back to it... today, if this counts.
I made my final Christmas trip beyond the front door on Saturday: the last thing that had to be posted at the local village shop and post office. That left me *really* exhausted for the rest of Saturday, and Sunday.

I don't expect to leave the house again until some time in the New Year.  I have two Tesco deliveries coming before Christmas, so I'l be fine, or fine enough given the circumstances.
(Yes, very much the "better 'ole" principle.)

Having visitors staying would be disastrous.  I'd try too hard to interact when I should be crashed out resting.

The Christmas train (or loco) is running well.  More reliable in its adjusted version than previous outings.  Easier on the batteries too.

In the window there is a bit more distance between the cliffs.

At least six Santas still standing , at this point.

With added ceramic Christmas tree (with lights) in my kitchen window.

Job done.

A whole weak.

This is still not working well.  No, I'm not dangerously ill, and no, depression and low mood is not making any sort of comeback, but just the routine of getting through the day is leaving me so little spare that coming here to write is getting left behind (a couple of other internet support groups I find valuable are suffering similarly).  Rest, I always seem to need more rest.  Because my muscles get tired and ache.  Even just sitting.  Holding a magazine for more than a few minutes starts to pull on the biceps and forearms.

But I'm still here.  Still keeping going even if the world continues to shrink a little bit smaller.  And it's nearly Christmas. I must remember to have Christmas.
I will have a Christmas window.  Train is very nearly operational, problems nibbled at a few minutes at a time. Photos in due course.


OK.  Now let's see if I can't be a little more regular. Something happening in life to report might be good.  if other than dire events!

Not once a day, yet.

Still working on getting back up to daily posts.
Yesterday I made it to the local post office in order to send off a parcel of Christmas cards to my parents in France so they can fill them in and send them off to all their friends and contacts.
This sort of thing never used to be a job: I'd do it in passing while heading somewhere else.
Now it's laid me out, inactive for most of Wednesday and much of today.  A different scale of things.

Never mind... (If I starting minding this stuff I'd go completely doolally, so a policy decision was been made, some time ago.)

Meanwhile, I think that leaves just one more trip to the post office before Christmas.   The hiding in the bunker from the Christmas bombardment will start earlier than usual this year, is all.

The Christmas train will be ready.  On that I am determined.
A trivial objective, perhaps, but better than none at all.  
And quite big enough, looking at things from my current scale of disposable energy budget.

After that, we'll see.  Three or four bigger things drift immediately to mind, but I'm likely to need help with them all.  Inquiring after that may be the next project, in itself.

But I've missed one, already.

I'm not sure what happened to Monday.  It was mostly horizontal, and and fatigue-laden, though I hadn't really done anything.

Certainly no progress on the Christmas train, or even anything as marginally active as watching TV.  Just a "routine maintenance day", then, though I at least kept up with incoming e-mails, so the backlog is no bigger.

Today includes the weekly highlight of having groceries delivered, and with the time being a little uncertain I will probably get ten minutes in the kitchen to work on Christmas, through being downstairs ready.

That'll be about it for today, I think!
Oh, apart from thinking: can't help but do  lot of that.   I've designed half-a dozen ingenious model railway layouts in my head, though of even one of them gets built I'll be a bit surprised.  
Getting one or more out onto the exhibition circuit would be an ambition: I can hold on to a ghost of that as being a bit this side of total fantasy given, say, five years.    I'd need to be at least that (reliably) fit, before I can think about getting back to working  with children and teenagers on the autistic spectrum.  Being able to manage my garden would be another benchmark.

Not this year.   "Dig in and hold on" is more the plan for the next few months.

It's alright, you haven't missed much.

Neither have I, it seems.
I'm having trouble realising it's has been a week since I posted anything, but so little has happened in terms of productive activity or events, and so much time spent horizontal and inactive I'm sure I've lost a day or two, somewhere, and I would have been stretched to find something distinctive to say about each day.

I think I will try a change of routine, and aim to put in a blog entry at the beginning of the day: I am usually functional, for some values of functional, at breakfast just as the first mug of coffee starts to hit the system (assuming I have not made it without coffee, or using cold water, or any of the other oh-so-possible CSF brainfog errors.)

To bring up to date: my Christmas will be alone as both parents have been cleared to travel to New Zealand, neither health scare being anything like as bad is it appeared.   This is undoubtedly the best option with things as they are.

I did manage a trip in to town on Tuesday, the one I knew was unavoidable.  I was losing so much energy trying to find a taxi company that could take my booking that I gave up and drove.
The driving was not the problem, even though I was beginning to ache coming back.  Walking just a few yards was, the discomfort building up rapidly.  But I am now fixed for not having to leave the house for months, if need be, though Wednesday and Thursday were pretty much "do nothing" days as a result.

Now for more rest, and I'm still waiting to hear from my occupational therapist...
No real plan for next week.  Catching up on some e-mails and forum postings would be good.  It's not exactly "conquer Everest", is it?   But reality is trumps so I shall have to see what is possible.

Still Here, But discovering new levels of tiredness.

A bit of me, sort of detached, observing the rest of me, is actually quite amused.
The rest of me is not frantically worried as the fatigue rather rules that out.  Frantic worry would take resources I haven't got.

Impressive.  Still waiting to hear from my occupational therapist, though I can't see what she will have to offer...  A bite from a radioactive spider?


What sent me to bed for effectively all of today was news from my dad that mum had suddenly been taken seriously (but as it turned out, briefly) ill: unconscious, Dr had trouble finding a pulse or blood pressure, but by the time the ambulance had got her half-way to hospital she had completely recovered, and the hospital checks found nothing...  That's good, at least, but from my end it showed all too well up how much energy emotions can eat up, and I have no reserves of energy to spare.  Fifteen minutes after the Skype conversation going horizontal was compulsory.

It wasn't too good realising, while lying there, that in case of needing to get to France quickly I couldn't work out a viable method, currently, and I'd need a wheelchair once I got there in any case, with havoc that effort would wreak.

I knew I wasn't too good this time last year, but this is pointing up a marked degree of change.

Hmm.  Reality being trumps, this once more is something to work with or around.
A teleporter for Christmas would be quite nice.    Unlikely.
I may have to settle for a new bean bag.   Or a foam floor so I can drop  anywhere?