Pain is…

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A Stormy Word Cloud Describing Pain - Created by IdEye on Tagxedo

What would you add?

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Painful Philosophising

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Storm Break

Pain’s a funny thing, isn’t it?  It’s one of those suspicious things that I’m highly distrustful of.  I feel that it it’s one of those that must be quiet; a blend of feelings swirling in a confusing, unidentifiable muddle; that curious combination of shame and pride that I seem to specialise in.  Pride?  Oh yes, I am guilty of pride; a quiet pride that values discretion, silence and self-control.  And the shame?   Well, I feel shame when that secret, hidden pain seeps out into public.  I feel shame that perhaps that I’m not suffering as quietly, as dignifiedly, as worthily, as deservedly as I could or should be.  I feel shame because I doubt whether I am really as in control as I would either like to be or should be.

What is pain anyway?

I do ponder philosophical wonderings about the nature of this queer, abstract notion that in English we call ‘pain’.  I’m not a fan of the abstract, by its very nature it’s something that I can’t get a handle on.  I don’t really appreciate things that resist definition.  There’s comfort in labels and boxes, you have to admit.

So what is pain?

Is it something physical?

Now, there’s something satisfying about physical and the things that belong there.  It’s definable.  It’s tangible.  It’s real.

But what if pain isn’t physical?

Then what?

If pain isn’t definable, tangible then does that mean it isn’t real?

Then what?

Where else would pain belong?  Should we transfer it to the elusive domain of the ‘mental’?

Then what?

Well, if we push it over there then it becomes suspect.  Highly suspect.  Immediately we need to question whether or not it even exists, whether it is just some flaw or weakness of character.  Our society, our culture isn’t particularly generous or kind to or appreciative of the ‘mental’.

So I am left doubting.

What is pain?

Perhaps the problem is that English uses the word ‘pain’ in two ways, for a symptom and for suffering.  Other languages, I have observed, differentiate.  Perhaps it is the language, the word we use that blurs and confuses the nature of pain.

I am sad, I suffer, I have a broken heart, I’m in pain.

I hurt myself, I injure myself, I ache, I’m in pain.

Is one more genuine than the other?

Is one more valid than the other?

I don’t know.

But how do we decide which is which anyway?

And even if we limit ourselves to purely physical pain, how can it be defined, categorised, labelled?  We like hierarchies, meritocracies – how can I prove my pain against yours or of anyone else?

(If indeed I would want to).

(But, unfortunately, the medical and bureaucratic processes that surround us do want to).

I have a headache.

You have a headache.

Is one more genuine than the other?

Is one more valid than the other?

Is one more serious, more severe than the other?

How can we tell, how can we know?

Does it even matter?

Is pain measured by silent suffering or by the amount of pills that we consume?

Is pain measured by tears, external or internal, or stoicism?

Is pain measured by hysterics or isolation?

Does it even matter?

What is pain?

Is this pain real?

Can I just pretend it away?

(Because I’d love to, oh, I’d really love that).

Dark Night

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drop drop

go the tears

in the lonely night

when all are asleep
 
 
tick tick

goes the clock

in the pixelated night

never-ending
 
 
clunk clunk

goes the meter

in the clamorous night

no silence, no peace
 
 
flash flash

goes a light

in the overwhelming night

nuisance not beacon
 
 
my heart aches

my heart breaks

drop drop

drop drop

Howl

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My heart howls
It weeps for lost things
It sighs for past things
It beats, it loves

My heart howls
I’m not a Braveheart, a Lionheart
I’m just an everyday heart
I beat, I love

My heart howls
It clocks the shortening nights
And wants to set everything to rights
It beats, it loves

My heart howls
I’m not strong enough for this pain
It’s just too much strain
I beat, I love

My heart howls
It is powerless against the darkening
Yet it keeps on pretending
It beats, it loves

Before My Time

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Flowered Too Early

I gasped, trying to clutch reality, trying to stop the world from completely slipping from my fingers.  I can do this, I tell myself.  I cannot believe otherwise.  If I do then where will it end?  The world, my world, my life, everything will fall away, it will be the crash of a tower of bricks, a slight wobble here and there, the slow bend of the tower  but then the inevitable crash.  It will fall.  And all will be lost.

I tell myself to hold tight, I grip my hands tightly,  cramped-ridden knuckles that rarely seem able to straighten anymore, as if life, health, self, world could be something tangible, something that could be grasped, something that could be kept held of.  I can’t keep hold of them; they’re more slippery than fine sand grains.  And the tighter I grasp, the faster they are squeezed from my grip.  I cannot win.

I gasp, every breath is a struggle.  The physical world around me swims.  The ridged concrete path swirls in a blur of motion.  The metal fence posts alongside do tricks that no fence post should ever be able to master.  The world will not stay put.  It will not allow me to get a handle on it.  I cannot keep it still.  I grasp out at it but it moves, slippery and fast, and unreachable.  Everything is beyond me.

You’re not meant to get motion sickness walking.  But I do.  It’s not like I have mastered some locomotive state.  Or maybe I did once.  Once upon a time, I was able to keep up.  Keep up with what?  Life, self, health, world.  No more.  I am slower than the World’s Slowest Walkers.  I know.  They keep overtaking me.

I struggle to breathe, like an asthmatic at the end of a sprint.  But I have gone nowhere fast.

My body ridicules me.  Me, that self I dream of being.  I cannot be.  I am crippled and handicapped and fighting a body whose war I barely even understand.  I am conspired against daily.  I lose daily.

I no longer feel safe walking by myself.  I don’t have the breath to think let alone scream in defence.  I feel shaky, vulnerable, weak, frail.  I am not myself anymore.  I can’t walk out into the world with the bravado that I used to.  I can’t take the time to enjoy a moment of solitude or the world around me.  I am too busy fighting.  There are days when I walk so slowly past front gardens that I get to know each and every blade of grass by name.  I don’t admire flowers, they get boring when you’ve spent five minutes walking passed the same one.  They taunt me, moving free in a breeze.  They have more speed than me.  They move whilst I am motionless.  One day snails will overtake me.

I muddle words and can’t remember whether I had conversations out loud, in my head or in my sleep.  I can’t remember what needs doing or even what I have done.  I forget where I am halfway through a recipe.  I forget ideas halfway through sentences.  I forget.  I forget.  Me, who has always been a memory keeper.  Me, this is my role, this my usefulness in the world, because I can remember.  And I can’t.  What have I left?  I console myself with sarcastic humour, reminding myself that at least at some point I will forget that I ever even had a memory.  But at the moment?  Oh no, I remember.  I remember the glory days.

The glory days that never were.

A golden age only exists in nostalgia, a better time compared to current woes.

And I do remember that there have never been glory days for me, I have never succeeded, not even at being myself.  And now I feel perhaps I would have a chance but it is all being dashed away from, like that tower of bricks.  I cannot stop them falling, I cannot stop the present and I dread the future.

My hand shakes.  I am weak and vulnerable and pathetic.

This is not me.

This is not who I want to be.

This is not who I should be.

I forget names, faces become foggy.

I mix up all my nouns.  If I can even remember any.

I get my sentences backwards.

More vicar, tea?

I don’t know if the world notices but I do.  I notice.  I see every single mistake, every single failure.  I, who have tried so hard my entire life to hide my weaknesses, my problems, now have them writ embarrassingly large across each and every conversation and each and every day.

This is not me.

The slow, painful steps that I am taking through life and the world.

This is not me.

I sit motionless, lost, unable to find the strength to do anything.

This is not me.

I cannot form sentences.

This not me.

I cannot remember.

This is not me.

But it is.

It is who I have become.

I didn’t get a choice.

I would have liked a choice.

Because I would really like to have life back.

I want another chance.

But something tells me it’s too late.

The sand has tumbled from my hands, I never had much anyway, and it cannot be found again.

I have lost.

Everything.

I have lost me.

Testimony from a Bad Day

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This is a post that I wrote many months ago when I was really struggling, it never got posted for some reason.  Today, I’m struggling again and fearing what that means.

Freesias

Whilst I cannot pick out the threads that Depression weaves through my life and thoughts, I am very aware of the limitations that ME puts upon me.  I know how my life could and would be so different if I didn’t have to fight this mongrel-beast every day.  However, I doubt myself and the severity, sometimes even the existence, of my illness.  Maybe it doesn’t help that ME is shrouded in confusion, political intrigue and complete incomprehension and lack of care.  Maybe it doesn’t help that people don’t take me seriously.

This is how my life gets.  Judge for yourself whether I’m making it up or whether I can really just try harder.

Do people really awake refreshed and eager for their day or is that just some fairy tale or something that only toddlers in on the secret of perpetual energy and motion know about?  Some mornings I wake and get out of bed in one move, perhaps my brain hasn’t quite woken up yet and told my body how and where it hurts.  Sometimes the pain, the ache, the stiffness kicks in as I round the corner of the bed.  Sometimes I can get all the way to the bathroom and back.  Maybe it’s because lying itself just gets so painful that my body is just glad to be stretching, moving again.

I feel every bump, dip and metal spring of the mattress, I feel every crease and wrinkle in the sheets, some nights my best friend of a duvet becomes a suffocating mass squashing the air out of me.  It’s just as well that I’m as flabby as this otherwise I’d have my bones to contend with too.  As it is, my joints can’t take their own weight and pressure and whichever side I lie on goes numb so quickly, fighting poor circulation and pins and needles all the night through.  I can’t regulate my temperature so even in the middle of summer (if we have with appropriate temperatures) I can find myself needing a hot water bottle, clutching it tight because I’m frozen through.  Other times, cold nights even, I will suddenly be  boiling hot, almost feverish and throwing the covers off.  Other times again a heat source such as a hot water bottle will scald my exterior but do nothing to take the chill away, it’s truly disconcerting having both extremes of temperature at once.  Lately, I’ve been finding that I don’t have enough strength to sleep on my side, I was using an arm to brake myself, hold myself up but I can’t even do that anymore.  I fall in a crushed tangle and I find myself more often or not sleeping flat on my face, which doesn’t help the breathing or the overheating, with my two firsts up by my head, baby style.  Babies can’t hold themselves up either.  It’s pathetic and uncomfortable.

I know a lot of people seem to think that it’s the norm to take a shower every morning, as if you’d self-implode in a miasma of bacteria for one missed shower.  Well, sorry to break it to you, ME will change that for sure.  Sometimes I have to think so far ahead, planning not just for each stage of my toilette but the rest that has to be calculated to allow me to make it out of the door in one semi-civilised piece that I have my shower the night before so I have plenty of night hours to sleep off the effects.  I rarely have one in the morning anymore.  Mornings are too much.  Especially if I’m expected to be out and about.  If not, it might be the middle of the day like some slovenly adolescent, especially in midwinter when the bathroom is freezing cold.

The shower poses particular changes.  When I stayed at someone’s recently I realised however that I should be very grateful that we have a shower tray rather than a bathtub.  I could barely climb in and out of that!  The biggest problem is the amount of energy showering requires; there are the standing and the heat and the steam and then the cold afterwards.  I can’t stand for very long at all.  And I’ve already mentioned that I struggle to regulate my temperature.  Sometimes I only realise how dead and cold my feet are when I feel the scalding water on them, slowly bringing them back to partial life.  Sometimes I have to turn the water hotter because it feels too cool.  I worry that one day I will get burnt.  I’m glad too that we have a shower that you can leave the temperature set rather than have to turn it through from off to hotter, I trust blindly that the temperature is the same as yesterday.

 After nearly every shower now, I end up resting on the bed afterwards.  Then there are days when I’m not well enough to take a shower at any point, even with nothing else to do.  I struggle with this, guilty because of this culturally induced belief of miasma.  I hate not having clean hair.  Even when I’m Depressed, unable to motivate myself to anything, I wash my hair.

Even if I take a shower the night before, my morning schedule still has to be simplified and reduced to the barest of elements in order for me to be able to manage a morning commitment.  Sometimes I get everything ready the night before and sleep right up as close to possible as to when I need to leave.  Other times it seems to work better that I get up about an hour earlier, do what I need to then have a nap before going out.

Just writing about getting up is exhausting!

There are so many things that need doing, so many things that I desperately want to do.  I lie or if I can, I sit up, in my bed and see the reminders of these things around me.  How easy it would be to pick up a book or a duster!  But is it?  I don’t even have the strength for that.  And it makes me feel wretchedly useless.  I lie thinking that I need the toilet and it takes me half an hour or so to summon the strength to get out of bed.  I walk slowly, stiffly to the bathroom then to the kitchen to wash my hands.  I’ll grab a drink or something whilst I’m up so I don’t have to get up again.  And then I have to collapse on the bed.  Exhausted.  For what?  I’ve done nothing.  I’m hungry but I don’t have the energy to prepare some food.  I go without.  Or wait until the next bathroom trip to grab a snack.  The washing up and washing piles higher.  But I can’t lift or stand.  Nothing gets done because I genuinely can’t do it.  It breaks my heart and destroys my soul every single day.

I’m so glad that we have a flat, all the rooms are close together and there are no steps between levels.  I can’t do stairs anymore.  And when I do have to go out then gravity usually helps me down, I don’t have to worry about the slow haul up the stairs until I come back.  Which is just as well or I’d never get out.

I can’t follow instructions anymore, even recipes.  I forget where I am and what needs doing next when I’m preparing the simplest of dishes.  Who forgets how to boil pasta and stick commercial sauce on the top?!  It’s ridiculous, stupid even.  And I hate it.  I can’t open lids and I can’t grip and turn tin openers.  I struggle to lift a pan of pasta only because it’s my responsibility to feed us both.  Graters are difficult too, dangerous at times.  I can’t slice cheese much less anything else.  The world’s sharpest knife might as well be blunt in my weak and clumsy grip.

I could go on but I don’t have the energy or the courage to face anymore things that I can’t actually do anymore.  It breaks my heart, and even my soul.  ME isn’t a choice, ME isn’t me.  But this is my life.

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A Spoonful of Medicine

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A Spoonful of Medicine

Well, it seems that a spoonful of medicine makes the world go down a whole lot better.

Now don’t get me wrong, I’m not a fan of pill popping.  I’m one of those proud, stubborn creatures who would rather endure something than surrender to a drug ((wo)man up as the Americans apparently say and take the pain is my view, especially if the alternative is needle-pointed).  Besides then what would I do if it got worse once I’ve given up and taken something?  Exactly.  And if it’s just about to get better than it really wasn’t worth being a sissy and taking something anyway.

I know.

I’m stubborn.  And the jury is still out as to whether that’s a good or bad thing.

I’ve had to rethink my attitude towards medicine lately.

Firstly, there’s the matter of ‘supplements’, which as far as I’m concerned is medicine with a small m, it’s fairly natural stuff after all.  A lot of the American ME patients take supplements and the Hummingbird Foundation presents quite a lot of evidence in favour of supplementing in chronic illness.  Like good teeth, taking vitamin pills is something that the Americans are much more au fait with.  The grin and bear your lot, stiff upper lip and all that school of thought isn’t so keen.  Besides, surely if you can eat a good enough diet then what’s the need?

I hate to break it to you all but there’s less and less good in even the healthiest aspects of our modern diet.  In 1940 McCane and Widdowson published their first study into the nutritional content of food.  In 1991 when the fifth study was published, a scientist chap compared the findings between that latest study and the original 1940 one.  It’s not good news.  Whilst we associate boring, unattractive vegetables with the 1940s, they seem to have been much healthier in terms of nutritional value than our modern superfoods (with a price tag to match).  For example, the humble spud had 30% more magnesium, 35% more calcium, 45% more iron and 47% more copper back then.  Scared?

(Actually, I’ve just checked for you.  Potato still outranks blueberry on minerals and vitamins, except Vitamin K.  I’d keep playing top trumps with the groceries but I’m a little tired).

There are also two other factors involved in this supplementing decision, both involving that simple aphorism to ‘just eat a good diet’.  (I’m getting a little suspicious of any phrase that’s preceded by ‘just’).  I can’t afford to.  It’s embarrassing to admit that.  Fruit and vegetables are luxuries on my budget, as are proteins.  They’re all essential but expensive.  I get what I can reduced.  Then there is my health.  It takes a great deal of ingenuity to make our very limited budget tasty (or just plain edible) and ingenuity requires energy.  I don’t have it.  Some days I don’t have the energy to even make plain, boring, simple pasta with commercial sauce.  I don’t have the energy to prepare fruits and vegetables.  Isn’t that shocking?  It drives me mad, I find it embarrassing and shameful.  But that’s the truth.  It isn’t easy to ‘just eat a good diet’.  Not for me.

But the problem with supplements is the cost.  To start a whole new regimen is a serious investment.  A relative kindly helped me out and I’m slowly starting to take some supplements as recommended on the Budget Plan, I’m introducing a new one every two weeks to minimise reactions (and to work out what I’m reacting to).  I can’t say for sure whether they’re helping me, my health is so variable that I’d have to live a day with and without in parallel to tell the difference and that isn’t apparently possible.  Fortunately, actually.  Because I’d just be seriously confused.  And having to live each day twice is got to be too much energy.  And stress.

The ladies in the vitamin shop (it’s one of those chain shops rather than a proper health food shop, I’m afraid) were astoundingly helpful.  I don’t make a lot of sense at the best of times and I kind of make for an awkward customer sometimes.  I found it very amusing that in the end, the closest multivitamin combo to the Plan was the Senior.  Yep, my body has OAP needs.  Great.  I’m also glad that one of them warned me about the um, consequences of taking B vitamins because otherwise I would have freaked.  (You can do your own research there).

So I’m a pill popper now.

My new doctor (I may tell you all about that another day) recommended that I take a Medicine (with a capital M) for the pain.  I was sceptical.  unsurprisingly.  But it seems that I’m secretly a sucker for magic bullets after all so I acquiesced.  They’re tiny tablets unlike most of the vitamin pills and taste of Refreshers.  I’m quite happy to take those.  I took it for a couple of days then realised that there was something odd happening.  It was really weird.  I didn’t know what it was.  I spent two days wondering what on earth was wrong with me.  Then I clicked.  I wasn’t hurting.

I’ve had serious chronic pain for months.  I can’t remember when I last didn’t.  Last year?  On a good day, I’m a 6 or a 7.  On the chronic scale, acute pain has a different scale.  8 is bad.  Very bad.  9 is screaming out loud and giving in to painkillers.  The painkillers don’t really touch it.  There is no 10.  10 is a nightmare not yet discovered.  It could always get worse after all.

My pain is 5 and below.  I’m going to have to rediscover all the different lower stages again.  I don’t remember them.  I still have some pain when I do more physically, the odd specific symptom with pain but I’m not hurting all over constantly.

It’s weird.  Seriously weird.

But I think I could get used to it.

So I’m a pill popper now.

As I was taking all these pills already, I decided that I really needed to get back to my happy pills.  You know what I mean.  Only mine is technically liquid not pills.  I am really struggling, there’s a lot of stress and stuff going on again in my life and well, my chemicals don’t usually work in my favour anyway.  I hadn’t been taking it again because the birds stole my syringe (well, maybe not technically) and then I was on antibiotics for my second tooth (or un-tooth seeing as it had been ripped out) that stated no alcohol.  (What is it about medicines that say ‘no alcohol’ that suddenly make you want to have a drink?!)  They were really nasty antibiotics anyway.  But the liquid has alcohol in (don’t get your hopes up, it’s not worth counting unless you’re already puking on another medicine and it tastes totally vile besides).  So I had to wait.

Once all these barriers had been sorted, there was still the psychological to cross.  One, I don’t like to take medicines.  (That was the original theme of this post, if you vaguely remember).  Two, it tastes so vile that I cannot actually bring myself to make myself take it.  It is the kind of thing that an evil doctor or parent would ram in your gob for you.  You don’t do it to yourself.  Yuck.  It makes my toes cringe.

So I did it.  I took another Medicine with a capital M.

Admittedly, it doesn’t taste quite so bad when served up in a dosing syringe because it kind of hits the back of throat immediately rather than sits in your mouth as you reluctantly suck it off the spoon.  (Toes cringing at memory).

I’ve been using an online mood testing thing which sounds a bit of a gimmick but I thought I’d give it a try.  It’s been interesting, I thought my mood was fairly constant (albeit low) but apparently not.  And when I thought I was having a bad day, I scored my highest score (22%).  Crazy.

So I took one dose of the happy pills (in liquid form) and by the following afternoon I was feeling really weird.  Properly weird.  I couldn’t place what the matter was with me.  I don’t normally feel like that at all.  By late bedtime (my circadian rhythm is up the creek again partying with the grasshoppers), I had this gut feeling that I should retest my mood.  I hit 47%.  (I’d been averaging 11% for most of the week before).  Woah.  No wonder I felt weird.

So I’m a pill popper now.

In liquid form.

It’s amazing what a spoonful of medicine can do.  It certainly makes the world go down a little better.

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