Pain Flare

Recently, on my personal page, I posted a brief note about a pesticide exposure and subsequent anaphylactic reaction I'd experienced. Now, I've had literally hundreds of these... they don't get any easier, but they are a major component of my life and have been for over 30 years. A much loved friend from highschool, who, granted hasn't seen me in the flesh for just about as long told me that until she'd read that post (which wasn't wildly detailed, but was still more than I'd normally say) she really had no idea... and I realized how much I censor my life from even those who I consider pretty close friends. I'm a rather private person, and I've been schooled in the Peter Rabbit's mom's school; that is to say "If you can't say anything nice, don't say anything at all."

 

Now this doesn't mean that I'm setting out to deceive, or that I'm purposefully hiding the harder parts of my life; I just don't like to be seen as a complainer, don't want to dramatize, don't want to burden friends or acquaintances with the ugly details. It may also be a reflection of the way I live a life that is punctuated by extremely distressing, often traumatic and/or life threatening events; I deal with them when I have to and move on as soon as I can... so I just don't dwell on the rougher bits any more than I must. I guess I also tend to unconsciously believe that people know what I mean when I say "I've had an anaphylactic" or "I'm just getting over a pain flare", because these things are such a constant and prevalent part of my life. Silly of me, when here I am working towards increasing awareness of some of the rare disorders I live with, and working to provide education to both other sufferers and the world at large. Because of course, "anaphylactic", or "pain flare" are just words, if you've never been through one.

I may return to the topic of anaphylaxis and what that really means at another time, after I get the Mast Cell Disease component of Taming the Beast up and running. But at this time, I have something to share with you, my readers... something I wouldn't normally share (and heaven knows I wouldn't wish on anyone); a pain flare. After waking up several nights ago with one of those nasty unexpected sudden increases in pain that those of us who have RSD/CRPS  must face and deal with, it occurred to me that there were many of my friends who probably had no more concept of what I really meant when I said "I had a pain flare last week", than they do when I say "I had an anaphylactic". So I tried to set the experience into words. It's a little hard to be posting this... I feel exposed, in some way, like a turtle without its shell, or a cat without its fur, but I feel it is important to take this chance to increase awareness and understanding.

This isn't one of my prettier posts... it may not be one of my most useful. There are no real tips and helpful hints in this one, just a glimpse into the life of a person who has "whole body" RSD/CRPS with organ involvement. Those of my readers who would like to use this to help their own friends or families understand, please do feel free to print it up, or direct them to the site (though of course I'd want to be asked and then fully credited if you'd like to post it elsewhere). So, here it is my friends, to the best of my abilities; What it's like to experience a whole body RSD/CRPS Pain Flare.

 

PAIN FLARE

You are deeply asleep

(rare triumph, when sleep is so often elusive

for your troubled, tangled body)

But, oh rare joy, you are for this moment

Deeply, soundly, dreamlessly

asleep

Until

Your body jolts as though

10,000 volts slam through you…

In the darkness of the room      

You are confused, unsure,

As you struggle up through layers of consciousness

Struggle to surface and then

To comprehend

Why you have awakened

And what are these sensations

Flooding your body flooding your mind.

You become aware of a miasma

Of fear, a deep and total sense

Of forbidding, lurking doom

In the darkness of the room

You feel utterly alone

Distressed, almost in panic

It is upon you it engulfs you and

You thrash through waves of…

Something...

Something so encompassing you have no words for it

You hear a strange and eerie keening

Filling up your ears and spreading through the darkness

Like blood in water wonder where this terrible sound is coming from

And realize

it’s you

and with that realization know at last

what’s happening…

it is the Beast

it’s back again

you don’t know what you could have done

to call it but it’s back

and all you know and all you are

is Pain.

This is not pain, like a broken limb, a sliver, a toothache,

This is no pain you can define, confine, contain

This Pain fills up your body fills your brain

You have no dignity, no power, no purchase on this Pain

It is not separate from you,

It is you

and you no longer exist

As a person or

an entity for

You are Pain

You are fire,

You are lightening,

You are dripping, bloody meat

an oozing flaring crackling flooding firey

totality

of Pain.

Light snaps on, brings room, “reality” into the picture

As your loving mate reaches out for you, then knowing,

Backs away to reach instead for heavy duty medication

Though it isn’t “time”, the timer hasn’t rung

This is not on the schedule but he knows

The way it goes, he recognizes where we are

This one is a big one, it’s going to take the big guns

And the small, it’s going to take them all

To Tame it this time, but he’s here

You cling to the sight of him, desperate, despairing

Through eyes of flame a blur of hope

Don’t leave me

He says I’m here, we’ll get this under control

Hold on

He gathers up the tools Opiates and cannabis, multiple homeopathics, herbal tinctures, muscle relaxants, magnesium, and more You try to help him help yourself with trembling hands You try to stop the wailing pouring from your lips 

As one dog leaves the room in guilty fear the other with compassion presses near

Sweat pours off you like a rain of fire, your bloody tears dry from the heat The room spins your head reels nausea floods your mouth with saliva You choke on it choke on the pain the vomit fills your throat again

Loving hands administer the help you so desperately need but the touch is a touch electric it is agony your skin peels off in dripping sheets in shards of burning meat you are viscera, raw, untouchable but touch you need you bleed your blood is pain your pain is rain you are on fire…

Your son, your daughter comes, they take their places know the paces; vomit bowl, cold cloth, an open window, acupressure… hours of it, though all are fighting sleep but you, then even you despite the pain (it seems unthinkable); hot cloth, a heavy hand on feet to ground you… voices calm and quiet… reminding you of mental tools… you try to slow your breathing, use your many tricks to try to calm your central nervous system… this for now, a joke, but you are trying you are crying you are gratitude and grief, continued pain vies with relief comes filtering through the waves of muscle/abdominal/intercostal/intestinal/uterine/biliary spasm, through the crackling neuropathy, electrical and sharp it sizzles through the roadmaps of your nerves and veins your brain you taste it bloody and metallic ozone fills your senses after all…

it’s only pain

... as the intensity begins to wane… microscopically at first… it can be dissected now… yes, it is here more than there, it is this not so much that, you think you might just get a handle on it, but it rises up again, floods you with fear and you are Pain and you are Pain and you are Pain and yet you keep on fighting biting your lip to taste a pain that you can control you are rolling with the punches rolling in the deeps of Pain

... and with the help of your loving family the practices so hard wrought so much practice you have learned so many tools that you have earned and you keep working to regain your mastery over this Pain this Pain this Pain this Pain

again

.. … ..

Come morning there will be time enough

to try to assess what the triggers were;

what you "did wrong", what the weather, the fickle finger of fate, whatever factors went wrong

to force your lip apart again to sing this song

of Pain of Pain of Pain…

The meds and the alternatives All your tools are feebly but finally kicking in

And now you know,

eventually you will prevail,

it will recede

to something you can contain

again and go through each day encompassing

and dealing with and breaking it down

to a size you can withstand for each new hour…

it will once more become the Beast that you can Tame with your hard won powers,

or so you pray…

Not that you ever escape it,

but you make it through each minute of each day of this life that is your now your life

a life of constant Pain….

And there will be the tolls to pay tomorrow,

grief and anger,

sadness sorrow,

walking the tightrope,

fighting the fear,

knowing that another bout, another battle

is always and ever hovering near, a beastly vulture lurking

over the shoulder of your regular measure

of breath by breath daily pain…

But for now…. though still flooded, and exhausted,

you know you can once more survive

without allowing the burden you bear in your battered body to show,

you know you will once more be able to withstand the wearing of your regular house of pain

… you have gotten through a Pain Flare…

once again.

 

 

 

 

 

 

 

Author: Lili Wilde
Date Posted: 2014-07-26   Date Last Edited: 2014-10-06 23:57:44