Another Year Older

In the life horizontal.
(A special post for the 12th May Blog Bomb)

This year the brief resurrection has required even more effort than last year.
(you really know you're scraping the bottom of the barrel when you start to get splinters.)
I find it difficult to  remember that when I started this blog putting a few words in every day seemed no terrible effort, and a useful way of keeping track of how my condition varied.

Hmm.

In the last twelve months, despite variations, and the greatest NON-efforts I could make to avoid excess activity, the trend has still been unmistakably downward.
Things I might have attempted this time last year are beyond reach.
Even my internet world is shrinking, as favourite groups and support groups have had to be visited less frequently, or dropped entirely as cuts in my energy budget needed to be made.`
Similarly with Skype and other contact with friends
Even real-life visitors have to be put on ration: company is tiring.
(doubly so if you keep having to explain that to people who "don't get it")

I'm more definitely housebound than last year, and more horizontally inclined too.
I have sold my car: there were no realistic prospects of me resuming driving in terms of months.

My garden is beyond reach in terms of doing anything: by the time I get there I've overdone it!
Nature is reclaiming my garden railway.  That is going to be an interesting job of rediscovery and restoration, come the day.  
(preferably before it's a job for Time Team)
Nothing is going to be permanently spoiled.  
It comes under the common Chronic Fatigue Syndrome category of "that's just going to have to wait."
And the next bit of CFS discipline is not getting frustrated, angry, depressed or anxious about things moving into that category: these only burn up precious energy to no useful effect. 

Finding things to do that keep my mind from going mad that take near zero energy (mental and physical) is important but, just to hit one of so many Catch-22 moments, it can't be something to put a lot of effort into!

I still manage a little bit of playing with model trains in my Dr Frankenstein way, and get a few smiles and laughs by having varied displays in my kitchen window.   I don't change them so often as I used to, though.

Christmas involved some festively modified dinosaurs 

And a set of Santas (cake toppers) working-out for Christmas.

So, circumstantial evidence notwithstanding, especially as far as some friends and internet contacts are concerned, I'm not dead.  I'm not even pining for the fiords.


Just not very conspicuous, due the the nature of the condition.
We're not that into protest marches, sponsored abseiling or marathons etc,  It's that Catch 22 again.
If I weren't so ill I could make a better job of telling people how ill I am.

Oh yes... My local self-help support society and magazine has folded...
... no-one was well enough to keep it going.

That fits.  And is the sort of thing where black humour comes in handy.
I tend to rely on that and it hasn't failed me yet.
Along with some Norse or Anglo-Saxon fatalism, and some Buddhist-like detachment.
I work with whatever I can find that works.

Chris
For the #May12 BlogBomb

To a first approximation, I'm dead.

(A special post for the 12th May Blog Bomb)

"To a first approximation, I'm dead."
No, this is not a statement of depression or of despair.
Neither is it altogether fanciful.

Mix a bit of mathematics with some black humour and ideas such as the above can emerge,
and be quite entertaining to play with.

Even compared with the opening post of this blog, just shy of two years ago, my abilities have dropped considerably.  And compared to how I was two years before that, yes, many markers for strength, stamina and activity are well below 10% of what I could do then.
Walk five miles?  No problem: I just needed a reason
Now: half a mile? That's vanished out of sight.  I could probably do a tenth of that (88yds!)  but I'd be paying for such recklessness for the next several days.

Painting and decorating?  I had a new old house to work on, and could happily spend a morning painting, or working on claiming the garden back from the jungle.
Four hours, stopping for lunch and the one o'clock news?
10% of that?  24 minutes with a paint brush has been well outside the envelope of "sustainable" for a year or more.
Ten minutes would be my limit, or slightly over it.   Painting walls, one square foot at a time.
(With fifty minutes *rest*, not some other activity, for the rest of the hour.)

So, I might say that to a first approximation I'm dead.
More than 90% of "me doing things" has disappeared.
Leaving the house is pointless and energy-saving within it, vital.
Having to rest half-way though eating an apple because the jaw muscles have started aching with fatigue is pretty impressive (not always, just sometimes.)

Enough.
That's my CFS/ME "as is".
My world is smaller than it was.   It's a matter of living with that.  And working with that.
And making the best of that even if:

No, it isn't what I've ordered, just what I've got. 

And to add a little perspective: 

I have a roof over my head, I have access to clean water, 

I can afford food and fuel, 

and no-one is shooting at me. 

There are millions worse off than me, so I'll not shout too loudly about my fate.

And I can still do a little.   "Putting smiles on other peoples faces" has been a long-term guiding principle.

And I do try to keep something interesting in my kitchen window 

(it's right by the pavement and has a nice deep windowledge.)

Last week my Tesco food delivery driver looked at the castle, made the trains run by pressing the exterior button provided, smiled and said:

"That's made my day".   Mine too, though I have to work at it more slowly and carefully than before.

(I can thoroughly recommend the castle kit and its relatives: no gluing, no cutting out.  Just right for a low energy distraction and entertaining pastime.)

I suppose this means I'm not dead yet.  So let's live a bit 

(But within the means available!)

Chris.

For the #May12BlogBomb

A Brief Resurrection.

It has been proposed that for May 12th, International ME/CFS & FM Awareness Day,
A "Blog Bomb" be attempted, with as many people as possible posting a blog piece of relevance,

With pointers and connections being made via #May12BlogBomb.
See also http://sallyjustme.blogspot.com/2014/05/May12BlogBombLinks.html

This dormant blog, dormant due to worsening CFS/ME, will host a piece tomorrow, a special effort being made for the occasion.

It seems worth it.

I'll drop washing and shaving for couple of days, or something else, as required, to compensate for the required energy and effort.

These things happen when on a very tight budget for activity.

As the old joke about the elderly couple has it.

She:"Darling, why don't you come upstairs and make love?"

He: "I can't do both."

A new year. Let's see what we can do with it.

The impression over Christmas has been confirmed, I am not getting better, the limbo bar has been lowered and I'm going to have to aim at doing even less.

Having discussed my symptoms with my occupational therapist, I should definitely consider myself housebound, and I should try for a few days of bed rest, or as near as I can manage. That's for next week when I've thought through the practicalities, me living alone.

They say the world is getting smaller.  Mine appears to be.
Mood is adequate, I can't say ecstatic, as the prospects for getting the garden operational this year are not looking good.

I am definitely running on black humour, hence this little piece:


Having CFS / ME is rather like being dead.  But without any of the advantages.

At least when you're dead you don't have to keep explaining your condition to people.
And when you're dead the lack of mobility really doesn't bother you.

At least when you're dead the stiffness passes off after a while.
And you are not in the bad books of family or friends for "not joining in."

At least when you're dead there's no anxiety about brown envelopes coming through the letter box.
And there's at least a reasonable chance of ATOS not finding you fit for work.

At least when you're dead there's no daily struggle to get dressed.
And no-one is likely to mark you down on what you look like.

At least when you're dead there's no need to keep lurching around like a zombie.
(Unless you really want to.)
And the doctors, at long last, can actually say what's wrong with you.


Chris.

No, I am not depressed or suicidal.
Just having  a slight flare up of the black and twisted humour.

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?

I see, I see.

In particular I've been seeing marginal hallucinations.

No panic: I've had them before though not with this frequency, and I know exactly what they are and what they mean.
Little ghost flickers at the edge of my vision means I am very, very tired.
I've only been there one or twice before: when backpacking, many years ago, and during a marked bout of lack of sleep when I had a chest infection and was coughing all night for several nights.   So having them now means the price for doing Halloween was even higher than I had expected.   Oh well.  
Nothing much to do now till Christmas, anyway, and it looks like "doing nothing much" is going to be the campaign objective!

Apart from these little ghostly companions, (who may be leaving me today: they seem to be less frequent) everything aches spectacularly. Who's a silly (or obstinate) boy, then?

If I don't get some improvement in the next couple of days, I'll have to go for *really* minimal activity for a few days to see if I can get inside the fatigue loop.  I've pencilled in a plan and timetable.  We'll see how things are by Thursday or Friday...    Not so much life in the fast lane, more life on the hard shoulder, with a puncture.

Mood holding up (touching on highly amused at my own absurd and pathetic state, at times, and if it works I ain't going to knock it just for now.)

And so to bed.

So here we are.

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.

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.

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.

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.

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."

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!

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."

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.