Tuesday, 12 May 2015

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.


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.

For the #May12 BlogBomb

Monday, 12 May 2014

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.)

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!)

For the #May12BlogBomb

Sunday, 11 May 2014

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."

Wednesday, 9 January 2013

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.


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

Saturday, 29 December 2012

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.



Monday, 17 December 2012

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.

Thursday, 29 November 2012

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!