"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
Thank you so much for making the unimaginable extra effort required to share this, Chris!ReplyDelete
Now for a few real "do very little" days.
Hi Chris, fellow May 12th Blog bomber! (It's been 5 days since the blog bomb and I'm still making my way through all the posts, it was a huge success!)ReplyDelete
I loved this post, the cat photo made me laugh, this is definitely how I feel! I hope awareness week hasn't been too tiring for you!
x Hayley-Eszti | www.hayleyeszti.blogspot.com
Telling it as it is Chris... :D And with a refreshing outlook on life that I enjoy. Really appreciate that you wrote for this #May12BlogBombReplyDelete
Thank you so much for helping raise awareness by participating in the #May12BlogBomb.
Over 100 posts resulted, and links to the others can be found here: http://sallyjustme.blogspot.co.uk/2014/05/May12BlogBombLinks.html
Perhaps we’ll try this all again next year!