Hello! Dealing with ME. POTS, and chronic pain are on the bill for this elephant every day. I have been blogging as hellytheelephant for the last year, writing on what it is like to be a frustrated woman who has colours and laughter in her soul...but sickness in her body...and I have been drawing since I could hold a felt tip.
Why not walk a little in my slippers, and find out what life is like at The Elephant House?! :-)
Wednesday, 29 March 2017
The Spoons Don’t Work….
Over the last 18 months, I have been
reading as much as my tired and foggy little brain will let me, not
only about the nuts and bolts of ME (I am all too familiar with
that!), but about how to communicate the experience to the average
chronic-illness-virgin. I am also a chronic pain sufferer and it is
similarly difficult to explain to the average person what it is like
to be in constant pain that is apparently not going to get better, and
has no specific cause.
Whilst friendships with
healthy people have withered and fallen like crusty brown leaves to
the ground, I have made new and warm connections with the very
elderly and the chronically ill. I do not kid myself that this would
have been probable (or even desirable) before I became a refugee,
fleeing the uninhabitable world of wellness, and finding a safe haven with those who
are generous with the little energy they have.
there IS a need to explain my deeply baffling illness. There are
times I need to defend my corner, and need to know how to articulate
the fuzziness of our illness to a ‘healthy’.
discovered there is a whole new vocabulary for our diminished energy
supplies, the best known being the ‘Spoon Theory’. For me at
least I find this termanology frustratingly unhelpful. In brief; the idea is that a
bunch of spoons, real or imagined, can be used to explain how the
energy of a chronically sick person is drained: Eating breakfast: one
spoon gone, taking a shower, minus another spoon and so on until I am spread like jam on the nearest mattress-‘spoonless’.
similie doesn’t work for the simple reason that on any given day I
never know how many spoons I have to start with. Sure, I know if I
have slept badly and wake grumpy and in pain, it will likely be a
beast of a day, but it is not always so easy to predict. Some days
are slow to get started and then I find a surprising burst of energy
after my nap. Other times I feel quite good and energised first
thing, only to crash at 11am and am forced to retreat to my bed for
the duration. The explanation is obvious: someone is nicking my
There is also the Energy Envelope ( the amount of
energy I have most days would fit easily into an envelope), Energy
Account ( at the bank of un-co-operative. where I can never get an
accurate statement and someone keeps withdrawing my money), and
Marbles (as with the Spoons, how do I know how many marbles I have or
use?)…and don’t get me started on 'losing my marbles' which becomes
more likely with every day that passes..
Why am I getting
so steamed up about a handful of spoons, a virtual bank account and a
lot of glass balls? Maybe it is because if I had a more ‘recognised’
long-term illness I would be getting treatment, not similes.
are told we must have a new way of seeing things, a new attitude to
being sick. We must work 24/7 at being ill and in addition we must
advocate for ourselves in a world that is baffled by our illness, and
is barely funding research to help us LIVE again.
that when the medical profession can’t understand or cure
something, they then turn the responsibility back to the patients. It
can only be our own fault to have allowed ourselves to become ill
with something that defies explanation: our punishment is to be
forced to waste our minuscule energies on into ‘managing’ the
unmanageable. Doctors telling us to pace more,is like the captain of
the Titanic complaining that the ship is only sinking because the
deckchairs are poorly arranged.
It is good that many
people find the spoons etc helpful, and yes, I know most of these
ideas come from patients themselves. Maybe I was just not drawn that
way. I don’t believe that life can be codified so readily. Whilst
there are activities that always take up a lot of energy, most things
vary according to other elements that are completely outside my
control: the season, time of day, other infections, my cycle, OTHER
PEOPLE, receiving good/bad news, and for me how Mr H is- as there are
two of us chronically ill at the elephant house. I would have to be a
master statistician to analyse the spoons out of that lot!
is no respecter of our plans, schemes and attitudes. To paraphrase
the saying; ‘ ME goes on regardless, whilst you are busy making