I am being referred to our local pain clinic. I'm not exactly sure what it will entail, or what outcome I should expect, but one thing has been made clear.... I will NOT get an appointment without filling out their forms.... (Referral to a chronic pain clinic; question on form: do you have pain? Well, at least that one was easy to answer.)
However the question that has caused all kinds of strife inside my head tonight was this:
It seems simple enough, but really............ it is not. Is is just not.
First, my brain screams - define health? Do they mean pain, my life, my quality of life, my health in what context... actually, HEALTH in what context?
I think the problem is perhaps the word 'imagine'. It kind of works in my brain the way saying 'don't think of an elephant' does for everyone - it's impossible not to. So when someone says 'imagine' my brain is very very good at just taking that instruction literally. And of course, imagination knows no bounds....
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Then.......... Answer everything
about TODAY
What if I feel
worse tomorrow; next week? By the time the appointment comes? Surely THAT would be a better time to answer. That's usually when they give you these forms. Then at least you know you have put your 'right' answer on that day, and can explain it when asked.
My brain goes into overdrive...... all by itself. I am really trying hard to think 'first number that pops into my head; first number that pops into my head'.......... but there is no number.
Instead there is................................. Phenomenology;
existentialism: is our only reality the moment in which we currently exist? (I curse my undergrad dissertation.) If
that is the case, then do the future and the past truly exist? What about living in the moment? Zen? Pain
being subjective? How can I compare
something subjective to the "worst I can imagine" or "the best I
can imagine"
OK, reel it in.... So what is
the worst imaginable state of health I think of?
- Locked In Syndrome, I
definitely think that could be the worst. Ignore the could. Just start here...no need for a whole list of alternatives.... So, that's at zero.
- A coma with no
awareness would technically be a worse state of health (I think - considering HEALTH, not LIFE), but there would be
no awareness about what was happening, therefore where would that actually
stand on this scale? How many times
have I said I wish someone could just put me in a coma, let me heal, let
the pain go away, and I could wake up when it was all over. A lot. I even dreamed this. It was a very disappointing dream to wake from.
- Does that make my
current state of health worse than being in a coma? Is a coma preferable? (Yes, right now it
holds some appeal. For me - purely because I wouldn't be aware of my pain.) Does that mean if I would prefer to be in a coma, then
I should consider my health to be almost as bad as I can imagine?
- Except I can imagine
much worse - terrible things happen all the time. I'm not facing a terminal illness; I
still have the ability to think and use my brain (not scoring high on the
positive scale at this exact point in time). The possibility of intractable pain for
the rest of my life is still a horrifying possibility - a lifelong disability.... does that count as just thinking TODAY? Or is that imagining the worst I can imagine. I think the instructions are somewhat contradictory.
- Reel it in again....nobody knows where the pain path is winding; I prefer to just maintain a positive outlook on that one (My nerves will heal; my nerves will heal.... they are not damaged beyond repair). I would just quite like to be in a coma until my
nerves do heal; or they figure out a way to take my pain away (that doesn't involve suggestions of experimental treatment with bio-terrorism agents)…….. circle back
to this idea.... not really making progress....
Again, I
wonder out loud (yes, I am talking to
myself) how HEALTH is defined…. Is it simply the ability to live a 'normal' life? (Does anyone do that?) Should I be thinking about the
best life possible versus the worst possible - in that case, I consider myself
very lucky; there are people all around the world dealing with unimaginable
challenges simply to survive every day.
I have a sore shoulder and very limited use of my right arm. It's not good, it hurts like hell; but it's not like I suffer life-threatening discrimination for my beliefs, or the fact I'm female; or am a refugee fleeing war in my
country - does that count as quality of health?
I suppose that would more be LIFE, not HEALTH. So where does HEALTH lie between LIFE and
PAIN?
….. But, if
I'm supposed to imagine MY best health possible compared with MY worst health
possible - subjectively - and mark that on the chart, then I'm not very happy with my health
just now - not at all happy, so should I put a really low number?
What do the
numbers mean? Using the word PAIN would have made this a bit easier...
I wonder if
everyone finds these things this difficult……? (I doubt it.) I try so very hard
to do the 'gut instinct' thing here - it's always what the questionnaires tell
you to do. But my 'gut instinct' is all
these thoughts. Really. They just jump in my head all at once and the
only reason it takes so much time is because I have to try to sort through
them.
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I wonder if I
should just write an explanation instead of picking a number. Picking a number is too hard. I really do not believe humans should be
broken down into numbers to be entered into a binary computing system. We are too complex. (SEE!!?)
I want to pick
a low number; I am NOT satisfied with my health right now at all…. It prevents
any kind of normality… the surprise of 'waking up' and not knowing if today I
will be attacked by the firey raging pain monster; exhausted because pain has
prevented any kind of beneficial sleep; or feel (apprehensively) that maybe
today I can finally at least LOOK at my to-do list without collapsing onto an
ice pack. But I hate seeming negative; I
have coped with this entire thing (actually, that 'entire thing' would be my life....) by trying to focus on the positive. It goes against my
attitude to pick a low number…. but I don't think that has done me any favours
in the past - unfortunately I think I am too good at slapping on some make-up, a
cool hat (to hide the unwashed hair) and faking it.
Plus the girl
on the phone laughed at me. (Yes, she actually did. It was a definite chuckle, to be specific. It is impossible to give me
an appointment without this terribly important form, apparently.) If she needs this in front of her before she
can assign me an appointment, then they must give it some degree of importance
(hence my deliberating!). Therefore I
should probably pick a low number - be realistic instead of....... i don't know, what do I usually do? I don't really lie........ my Mum once said she didn't think I was entirely honest about the severity of my pain. I just assumed the various shoulder/ physio therapists knew, at that point - but here they don't. I know they don't, so I really DO need to remove this innate desire to appear strong, and be honest about all this (possibly the best advice I've been given this week). I DO need to be seen by someone
at the pain clinic as soon as possible…. I DO have severe pain. But I don't want them to think I'm a drama
queen and a weak female, as seems to have been the general (clearly
unjustified, as physical evidence later showed) opinion of other medical
professionals. Crap. I have been emotionally scarred by too many
judgmental medical professionals and it has rendered me incapable of actually
picking a number on what is possibly an entirely arbitrary chart. There's a cheery thought.
I wonder if I
just declare I'm a phenomenologist and I can't answer this question on grounds
of my philosophical beliefs, I could skip this one (hey, it works for religions). I really
don't see how rating ONE day on a scale, when realistically my appointment is
going to be weeks (hopefully not more than weeks, but that possibility does
exist) from now, is so important…. I could just write: I believe we live in the
moment and exist purely in that reality and therefore cannot imagine anything
other than what I feel now, making it impossible to compare this moment to
anything else.
It's kind of
my 'medically enforced zen' (i.e. don’t think about the future or you WILL
begin to freak out and question the meaning of everything).
It's kind of
true…. I've spent two years being told NOT to compare my pain today to,
for example, how my pain was immediately after my surgery (which is definitely the WORST I can imagine, based on my own experiences).
Pain is subjective (so I am repeatedly told). And right now, tonight, as I was filling in
that form, I felt like someone had embedded a giant axe deep into my scapula that
was cutting right through my shoulder blade area, all the muscles around it, and
into the back of my ribs…. And somehow it was sending out little electric shocks from
the axe-head in all directions. Should I
put something REALLY low?
That's not
exactly what the instructions say…. I have experienced worse than this - should
it go on my experience, rather than an imaginary best and worst? I struggle to think where that would put me
either.
I look at the
clock and realise it is nearly 2am; I am quite sure I have been having this
conversation with myself for well over half an hour, longer maybe. Perhaps I am crazy….
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I decide my
life is not 50% of what I would like it to be, nor is it closer to Locked In Syndrome than to 50%, and choose the number 40.
I imagine
being asked why I chose to write 40. I
wonder if explaining it was 2am, I had been having existential arguments with myself for too
long and I had to get to bed because I had physio the next day would be an
acceptable answer for arbitrarily picking an arbitrary number on an arbitrary
scale that someone I don't know, and who doesn't know me, will use to judge
me. Or more likely, enter into a computer programme designed for that purpose.
I wonder if
that is better than writing 'I'm an existential thinker.' I really don't know.
And now, after
I have written this all out, completed the formS (yes, that was just one) and
sealed the envelope, I realise I should have written 42.
If asked to explain, that would have been simple.
"There is a theory which states that if ever
anyone discovers exactly what the Universe is for and why it is here, it will
instantly disappear and be replaced by something even more bizarre and
inexplicable.
There is another theory which states that this has
already happened."
~ Douglas Adams
