Tuesday, August 12, 2014

Crazier than You

The other day I was roaming the streets, moaning, with tears streaming down my cheeks, much in the vein of a lunatic.  I barely noticed the streets and laneways I wandered, the beautiful terrace houses which form this neighbourhood. I was literally wringing my hands, also very much in the way of a crazy lady, and then I happened to notice a woman walking in front of me.  She was in a dirty blue robe, dressing gown that is, and slippers, and not much else.  It was freezing.  I could see the hairs on her legs bristling in the frigid air as she shuffled along.  She carried a canvas bag, the kind that you get from the supermarket in place of a plastic bag. I’m a tiny bit ashamed to say that I followed her.  She made a beeline for the bottleshop.  I didn’t go that far, but I like to imagine that she bought herself some cooking sherry, or maybe some Father O’Leary’s Velvet Cream. I thought she might go shuffling off to the nearest bench, or perhaps that I might find myself on a midweek adventure, tailing dressing gown lady back to her abode (not creepy, more in the way of a super sleuth). Instead, she legged it to the centre of the road, and stood waiting casually at the tram stop, her gown flapping in the breeze.  She made me feel a little better. At least I take my dressing gown off before I go up the street.

Tuesday, August 05, 2014

Melancholia, ramblings and the nice things that people do

Here is my ode to Melancholia

How can I ever utter words that can't be said 
How can I write down words which never should be read
These words are mine,  these thoughts are mine,  I have not been led
These are things that stay with you long after you are dead

Why this pain, so devout
I'm no pulpit I make no call
This worship always so cold and cruel
This is it, the sermon over
Lay me down surround by clover
There's no way out, but through that field
No shepherds there will have me yield
I want no part, I have no faith,
Can't feed pretense for other's sake
It is that bad
It's worse than that
All light has left, there's only black.


Wow, sorry, better out than in right? Unexpected poetising (sic) despite currently possessing the power of the shower. I always think of the Addams Family when I hear of Melancholia, an amusing name, not such an amusing state.  However, it’s not a perennial state. I have the most amazingly friends in the world. They constantly do amazing things to try to make things better. One of my very best friends since I was little, (of thirty years tenure indeed!), inhabits another state, so we rarely see each other. Regardless, our friendship has never changed, she has never changed, and I know that she is always thinking of me.  This week, a game’s been invented.  Along, “Where’s Wally?” lines, but in this case, “Where’s the Mushroom Man?”  She hides a toadstool with a somewhat amusing face in various places, including public ones, and shoots a picture to me. It is for to me to find the fungus. I always wanted to be a super sleuth, unfortunately, so far, my powers of observation are somewhat lacking.  I blame the pixels, and that pesky perplexing porcini.

Another one of my very best friends will lie around with me all day long watching TV and talking absolute rubbish, as we’ve done forever.  Another pair of best friend gourmands regularly prepare and deliver great care packages of treats.

Despite being surrounded by these wonderful beings, and many more besides, I can’t help feeling very much on my own.  Disconnected.  Like I’m floating above the world watching things happen. Apart from the obvious depression, at least part of this feeling can be expressed neatly in a word. Solipsism. Philosophically, and metaphorically speaking that is, I'm in a version of such a state. Intrinsically linked to melancholia? Not necessarily, one can certainly exist without the other.  Although, in declaring a state of solipsism, am I then automatically rejecting the existence of all of you, and all of those dear friends I’ve only just now lauded? Ugh, too lofty for this here playground. Regardless, a marvelous word... Solipsism, solipsistic, either way, definitely up there in my favorites, words that is, not states of being. 

Ohh, I sense a tangent. Reciprocity, that's another good one, say it out loud, it's somehow so satisfying, in every way really, I guess. Sound , meaning, etymology.. Ooh etymology. Such a wordy word indeed.  Now, you see what I mean about rambling?  Why all this rambling, I don't know why, there's nothing else to enjoy right now, and I take great solace (there's another!) in words. What are your favourites? Something to think out loud about perhaps...


Post Script


Because every post needs a postcript.  Just in case you were wondering, my face bewilderingly remains infected, and continues to peel off in an unsightly fashion. I've been fashioning myself a niqab from a grey woolly snood to save others from being graced with my face.  I do like to think of others.

Thursday, July 31, 2014

Lamia

I watched an incredible movie the other day, “Drag me to Hell”.  It was the kind of gross movie my dad and I used to love to watch together: a hilarious premise, rampant with a ridiculously disgusting level of gore AND replete with dirty gypsies.  Think maggots, gummy (mouth) attacks, projectile everything.  Imagine!  Well, you don’t have to, just download it and watch it immediately. 




In many ways, I saw myself mirrored in the main character, a girl, suddenly and unreasonably afflicted by a series of terrible events, in her case, a gypsy curse- the lamia.  It’s really the only feasible explanation for the accursed events that have befallen me, although in my case I fear that I might have been accursed by a crazy ex boyfriend rather than any Roma types.  

According to the film, the curse is not placed directly on the individual cursee, but rather, on an object owned by the cursee. The only way to rid oneself of a lamia is for the cursee to make a formal gift of the accursed object to another, thereby sentencing that person to an eternity vomiting maggots in hell. 


I need to find my accursed object.  Everyone, y’all be nice to me.

And another Post Script

By the way, I'm no longer just a portal for infection... I am infection.  Well, my face is anyway.  I have to take yet another course of antibiotics. Just another piece of evidence to support my conclusion really.

Monday, July 28, 2014

Portal... & P.S How to Subscribe

I always loved the word portal, it sounds so wizarding doesn't it?! Unfortunately not this time, not in my case anyhow.  My face is falling off, it's peeling away, and according to my surgeon, it is literally, a portal for infection.  While I've spent some time rolling those words around in my mouth delighting in each unctuous syllable, the outcome's actually rather rotten.  The fact that I’m a portal means that that I'm precluded from undergoing further traumatic surgical procedures until the cessation of any and all facial peeling, also, it's jolly unsightly, and jolly painful.

And yes, in case you were wondering, as I wrote the above I was speaking the words to myself as if I were an aged well to do British gent, mustying about in an old man's club surrounded by pipes, tomes and cries of "Balderdash!".


So, in true me, disaster always strikes all the time, the nausea is gone, yet my face is hideous, and is rather sore. The plan going forward is to await the facial healing so that they may proceed to implant what should be the final electrode, (that which they failed to implant in the last chapter), and then miraculously I will be cured, and then I will be delighting in all manner of things the likes of which you've never seen within mere months!  Imagine if it were true.  If only I weren't a portal.

Post Script

Some lovely readers have asked for instruction on how they might subscribe to this blog.  All you need to do is fill our your email address in the box just to the to the left of the very top post.  At the top of the box it says, "Follow Chronically Stimulated by email".   Do that and you'll have me forever, you lucky devils!

Oh, and one more thing, I know of course that portal was used in the Harry Potter books, but I rather meant wizarding in an Enid Blyton kind of way, rather than truly wizarding... hmmm perhaps next post I'll write in a different voice...

Friday, July 18, 2014

Let art represent

I was in Tasmania recently. Partly it was wonderful, I laughed like I hadn't in a long time, and I saw one of my best friends whom I hadn't seen in such a long time.  But partly it was awful, I cried a lot.  I cried because of the pain. I cried because of the things I could no longer do. I cried because of the things I could not hope to do.  The weight of such realisation sure produces fat tears.

We visited my friend and her beautiful family, and despite how I was feeling, we had two jolly evenings together, and it was wonderful.   We visited the Salamanca Markets too, and found an amazing artist named Sarah Millicent Elliot who produces a fantastic range of whimsical art based products- prints, brooches, hair ties and the like. I was drawn to this picture like a magnet, I think because it feels like me... slightly odd, and hanging on by a thread.


Tuesday, July 15, 2014

Up all night

Sometimes I dream in poetry, rolling verse riding the crest of emotion, and the shadows of hope lost and memories fading. I’m on a rollercoaster, a one track ride without control, dipping in and out of other people’s reality, vitality, normality. I’m screaming inside, and desperately out of focus.  It’s exhausting you know, in its lyricism, and relentlessness.  Even when I'm dreaming, I'm aware, and almost awake, total recall. There’s no respite, be it day or night. 

I’ve had an infection in the incision sites, just to add to my misery, and I've been really nauseous since I got out of hospital.  I’m returning this afternoon for a follow up appointment, and I hope to glean some more information about when and how they might attempt the placement of the last electrode, and snaffle some strong anti-emetics so that the vomitus maximus may finally cease… sorry TMI.  Updates soon I’m sure.  In the meantime, I’m distracting myself with Scandi-noir- I'm a Great Dane.

Tuesday, July 08, 2014

Never smile at an....

Lights, theatre, action! No, I’ve not been on the stage myself, certainly in the theatre though, you see  I’ve been back under.  I’ve been back under and it didn’t go so well. Despite the attestations, the protestations, the affitmations, it hasn’t gone well at all. The operation, sorry proceduralists, pro-cee-dure, was intended to be a one shot shop, a cure all in a final call theatre session where they brought my base stimulator device up to maximum capacity by implanting an additional three electrodes. That troublesome area would be shot right in its, ahem foot, before it was even able to send out any more of those nasty pain emissaries ( I imagine the signals being carried by miniature giants in my body, riding on great woolly mammoths - like in that amazing battle scene at the Wall in GoT).
There was one in particular that I was hankering for, just one electrode that would correspond with the ol’ nerves along my ribs at T3.   I was certainly encouraging  the other two as well, one electrode to cover the top region at T1, and another to try and attack the dastardly pain from the right hand side. Things did not go to plan.  I AWOKE ON THE OPERATING TABLE! I awoke on the operating table while they were still stitching my incisions, needless to say I am not a fan of the anaesthetist, who tried to laugh the matter away, and then proceeded to prescribe analgesia without any regard for my history.  Instead of waking groggily in the recovery room sometime after the procedure, I left the theatre sobbing with pain, and the trauma of the very event.

Later that day, my programmer came to visit me in my room, in disbelief of the negligence of the anaethetist. Ahh, it wasn’t just in my head.  She also dropped into conversation they’d been unable to place the last electrode, the lower one, at T3.  Apparently the operation had gone overtime, and they couldn’t keep me on the table any longer as I was moving around.. hhhmm , perhaps because I wasn’t ANAESTHETISED?  I’m so crushed, I have no words, oh except those. 

Tuesday, July 01, 2014

La Mer

It’s been a hiatus alright , of hippopotamus proportions.  Everything seemed to climb right on top of me and squish me flat, not flat enough to squeeze the air right out, but just so that I rather felt like that was happening. There’s been a move, and a holiday, and the thought of another holiday, and the prospect of so many other things, and a series of disappointments.  What was it I said about expectations?  Oh yes, I must read that bit again.  It’s my own fault.  My stupid brain.  Stupid, stupid brain.  The stimulator works, and then it doesn’t, and then it does, and then I get so confused as to what’s happening, I wonder if it finally is in my head, that it wasn’t then, but maybe that it is now. That’s possible isn’t it?  How am I ever going to get back to work? What if I go back, and then I can’t and then I’m stuck, in income protection limbo/ purgatory.. it really will be over, which will be a shame, because we finally have such a beautiful apartment.


Why can’t my chest just get better?  Why can’t it just be like it was in the trial, just the thought of that injustice kills me. But let this not just be a whaleboat of wallow, Let me speak to you of a cruiseliner.  I’m lucky to have a mater who’s a believer in the healing power of the rolling seas.  Yes, I’ve been cruising, with the grey army. Surprisingly, the food, as long as one stayed in the dining room, was remarkably good.  The waiters were adorable, the forced conversation at each meal at times delightful, at times trying, at times downright awful.  But, it was quite the cross section of society, so I suppose that’s to be expected.  I’ve learned that old men just love to bail up young girls and talk about themselves interminably, and that some old people are awfully rude.  I’ve also learned that one should never, ever dare to enter a buffet, and that those people who do gravitate to buffets often don’t know how to use cutlery.  Quelle horreure!  What is happening to the world?  Also, apparently people from Queensland do not own formal clothing.  Ok, judgment session over.  Apart from those obvious glitches, it was a relaxing time, and I had one marvelous morning with the pool all to myself during a torrential storm.  The waves pitched and heaved, as I did with them, and it was an amazing moment in time.  Until the sun came out, the people came out, and the peace was over.  I’m having another surgery tomorrow, I’m having another three electrodes implanted to try and get this dastardly, relentless pain… please let this be the one that works.  I still have to write about all things Tasmania.  More post op!

Saturday, June 21, 2014

Hiatus.. just about over

I'm sorry folks.. Or folk, my dear readership of at least one.  I've been away, and while some of that was rather jolly, now I'm not feeling so great. I have quite a number of almost finished posts, and if I can move myself into action, I will get them up soon. I'm just not sure how to move myself into any motion right now, even a forwards motion.  The weight of being ... ugh.
I'm sure there's song lyrics which should go with this.. More soon, perhaps.

Tuesday, May 06, 2014

It's official...

While some of you have claimed it for years and years, now it seems the the Council agrees with you:) 



At least I'll get to the store ahead of you, well, maybe.

Sunday, May 04, 2014

It's a hard enough life

Now... have I got you all singing Annie?  I've got me singing Annie.  Interestingly, or perhaps not interestingly, I'll leave that up to you, I saw Annie the musical just two weeks before I was stricken with pneumonia almost two years ago.  It was one of the worst shows I've ever seen, and I've seen the musical of Anna Karenina.  Oh, and before you say anything, I know it's really  a "A hard knock life".  It's just ever since I was little, I thought it was a "A hard enough life, and I think it sounds better anyway, so there you go:)

Don't get me wrong, I am a big fan of the movie, I can practically recite the thing. It was one of my favourite movies when I was little, I used to think I resembled one of the little girls in the orphanage with Annie.  Mainly though, I think I really loved New York, oh and Sandy of course.   Oh my goodness, maybe that’s why I wanted to get hitched in New York?!

I'll have to download my theory to Mr Sambot.

Anyway, the stage play in Melbourne was truly terrible. Australian kids cannot act, I don't know why, they just don't seem to have the confidence of American kids. 

I had looked forward to the day, I truly had.  I had walked into the city, gaily striding through the sunshine, stopping off at my favourite bakery to pick up a loaf of my favourite seediest of seedy sourdough to be dipped in to our Hungarian goulash later that night.

I met my family for pre-show yum cha, a long standing tradition. Then, to the entertainment. 

It. Was. Awful.  Truly, truly, awful.  

The arrangement was awful. The audience was awful, it was replete with rude old ladies, (seemingly from the same busload, obviously a cultural thing you know), many decidedly intent on kicking my cousin's seat with force throughout the performance.   I could not wait for the show to be over, I counted the minutes, the seconds.  I gave faux applause, oh yes I did. 

And finally, fin.  Do you get that it was awful?

Despite the steady Melbourne drizzle falling as Sunday eve closed in with its oppressive force, I resisted all offers of a ride home.  No, I would work off all of my anger, and walk/jog home to work off the sheer frustration that I'd wasted so many hours of my life in that darkened doomed room of gloom.

I inserted my earphones, and soon the melodic beats lulled my senses and began to take me away as the ball of my feet hit the ground in time with the bass line of the music.  Suddenly I was very much present, and I found myself flying through the air, my legs straight out in front of me. I could feel that my mouth was wide open. My eyes were locked with the eyes of a man standing about thirty metres away from me.  He was standing at a bus stop. And then I landed. Perhaps less then gracefully.

On my arse.

The man clapped. Somehow I managed to clamber upright, I had slipped on a disability ramp.

The man rushed over and offered assistance, to call an ambulance etc, but no, I was too proud.  He said that it had looked rather amazing. I had snaffued some impressive air.

Somehow, I managed to shuffle home, slowly, although it was only about 1km from home it sure seemed like ten.  I couldn't walk properly for weeks, although less than two weeks later I was at the beginning of this journey anyhow. 

Two months later, when I was in hospital for the first time, I underwent a bone scan. 

Diagnosis:  One broken posterior 


Prognosis:  Avoiding musical theatre is the only hope.

Sunday, April 27, 2014

Identified

It finally arrived, my medicalert ID bracelet. See the picture? 



Sorry, not the greatest, but I just used my phone, in the dark. It’s rose gold, with a filigree ID tag.  It states, “NO MRI, spinal cord stimulator implant”.  That’s it right.  It doesn't say Sambot though, although I thought about it. Ugh, ending a sentence with a preposition, sorry, it was for dramatic effect.  I only ever do it for dramatic effect, I call it artistic license.

I've been silent because my chest pain has been back with a vengeance, keeping me from going to sleep, keeping me from staying asleep, stabbing and relentless, like my heart is covered with a deep rooted infectious scab that's being ripped and torn apart.  Eeeuuwww, while that was really disgusting, it's actually quite an accurate description. 

My technician called to check in to me the other day and I expressed my fears and anxiety about the increasing, and re-surging pain, and she suggested that I give myself a master reset.  Hilarious. I turn the stimulation off for about an hour, and then restarted it at 10% and slowly increased the stimulation, until ultimately I ended up where I began, at 92%.  Even so, it was very reassuring to speak with her, she said it was normal for me to experience this breakthrough pain.  She said that I would definitely need reprogramming, as things move as healing happens.

Once I turned the stimulation off, I certainly noticed it.

 If nothing else, it made me realize that even now, with this breakthrough pain, the stimulation is working.  When it was off, and I was hit with the full force of the pain of yester-month, I found myself instantly back at the precipice of desperation, and I wanted to reach for the magic potion. But no, even somewhat failed stimulation is markedly better than that, teetering on that precipice.  So, Tuesday, back to the hospital for reprogramming, fingers crossed she has parameters of perfection for me now, like she did during the trial.


 In more positive news, three and half weeks post major procedure, today, I walked around the block! Oh yes, big news around here, much excitement.

Tuesday, April 22, 2014

Cleanse me

It’s almost three weeks since the final procedure, and I’m still sending most of the days horizontal in bed. I’m certainly more mobile (I wanted to say spry, but it brought to mind images of a crafty, wizened old lady- not yet thank you very much!), with each passing day, but with each new confidence, the very next day I get pushed back a little further again.  It still really, really hurts. On the sunnier side, the evil chest infection is almost gone, and I’ve actually tried turning the stimulation down, which has been somewhat effective.  Hopefully one day it will even out, or settle into a forwards pattern.  That would be nice.

But…. drum roll….  I can now report, I’ve had a real shower!!!!  After more than thirty, unkempt, prosey days. 

And yes, it was almost everything I’d hoped it would be, except that I couldn't bend, which is actually more restrictive than you realise, until you can’t.. bend that is.


It may have been the longest shower in the history of my showers. I’m actually normally very conscious of water conservation, also I get bored in there.   

Not this time.  While I was in there, delighting in the rainforest over my head feelings, the steam, the soaps, scrubs and suds, I noticed the name of one my cleansers… You'll have to look very closely at the gold writing, how very appropriate, tres amusant.





Sunday, April 20, 2014

There are some benefits...

There's got to be some benefits to this whole stimulator caper right? So, on Easter morning, I present to you, my top three advantages of being bionic. 
  1. First of all, I get to go to the head of the line at airport security, no security sensors for this Sambot.
  2. Secondly, I get new jewelery, my new ‘NO MRI’ bracelet is on its way.  Although I have a card for my wallet stating that I have a stimulator, and that I'm not to undergo MRI, or walk through security sensors, apparently, paramedics look for jewelery, and not through peoples wallets for little cards with instructions.
  3. And third, I present to you, mah reachin' stick!



Yes, I'm very aware this seems like it may be a children's toy, and quite frankly, I'm not sure that it isn't. But, as I'm restricted from bending, it does a remarkable job of, well, reachin'… oh, and then pickin', (up that is).

Yes, that’s three whole benefits, as I think of more, I’ll add them.  Oh yeah, maybe I can stop taking drugs, get out of bed, go back to work, and get my life back.  That’s got to be one, or more.  I'll let you know.

Saturday, April 19, 2014

The Many Do's and Don'ts of life as a Sambot

I've already whined abut the trampolining..  here's the comprehensive list.

 0-6 weeks post operatively
• Do not lift your elbows above shoulder height
• No bending, stretching, reaching, twisting, pushing or pulling
• Walking: you may walk as much as you like but do pace yourself, particularly if your
walking has been quite limited prior to the procedure
• Stairs: You may walk up stairs as much as you can tolerate but remember to pace yourself. Avoid going up two   stairs at a time.
• Carrying and lifting: You may lift and carry light things e.g. kettle as long as not full, cups/mugs, light     saucepans only.
• Cooking: Can be done as long as at waist height only. No bending to ovens.
• Driving: No driving until advised by pain nurse
• Sitting: Pace your sitting. Do not sit for long periods. When sitting sit with the back well supported at all time –   no slouching.
• Sleeping: Sleeping on your side will be less painful but any position is OK as long as the spine is not twisted    into a strange position. No hands above the head.
• Exercise: No stretching or rehabilitation exercises at this stage.
• Sex: Not advised at this stage.

6-12 weeks post operatively.
• Do not lift your elbows above shoulder height.
• No bending, stretching, reaching, twisting, pushing or pulling.
• Walking: you may walk as much as you like but do pace yourself
• Stairs: You may walk up stairs as much as you can tolerate but remember to pace yourself. Avoid going up two   stairs at a time.
• Carrying and lifting: You may lift and carry light things e.g.kettle as long as not full, cups/mugs, light saucepans    and light shopping bags only.
• Driving: No driving
• Sitting: no slouching and back to be supported at all times
• Sleeping: Any position is OK as long as the spine is not twisted into a strange position, and no hands above the head.
• Cooking: if predominantly at waist height.
• Exercise: No stretching or rehabilitation exercises at this stage.
• Sex: Not advised at this stage.

 3 months – 6 months post operatively.
• No prolonged elbows above shoulder height
• Gentle bending, stretching, pushing or pulling
• Minimal reaching and twisting.
• Walking: you may walk as much as you like but do pace yourself
• Stairs: You may walk up stairs as much as you can tolerate.  Avoid going up two stairs at a time
• Carrying and lifting: You may gradually increase the carrying and lifting.
·   NO GYM workouts.
• Driving: Driving can commence with short journeys only. Be aware of your posture and positioning especially when reversing. Mirrors should be used when reversing where possible. Remember – the minimum requirement for driving is the need to make an emergency stop. If you do not feel you are able to do this then do not drive.
• Sitting: no slouching and back to be supported at all times
• Cooking: Ovens can be used as long as knees are bent. Minimal bending from back.
• Exercise: You may begin gentle rehabilitation exercises.
• Sex: You can return to this activity as long as gentle. Remember to switch off your stimulator before undertaking activity.  Hahahaheehee!  So immature...

Long term dos and don’ts
• DO NOT receive manipulation from a physiotherapist, doctor, osteopath or chiropractor.
• DO NOT turn the head right the way round if you have a cervical stimulator (neck). (I'm imagining the Exorcist)
• DO NOT undergo MRI scanning. Normal x-ray and CT scan is OK.
• Avoid contact sports such as rugby and football.
• No judo, karate, taekwondo or boxing
• No carpentry, plastering or painting  (for shame!)
• No horse riding (sorry Bins)
• No operating arc welders, power tool etc with the stimulator switched on.  Noooooooooo!
• No driving with the stimulator switched on.
• Avoid high g forces e.g. fair ground rides, motor car racing
• No parachute or bungee jumping
• No trampolining
• No sprinting as a sport and avoid any sprint training.
• Avoid rowing as a gym exercise or activity.
• No Zumba exercise.
• No Cricket
• Golf is OK but those with upper stimulators may find this problematic.
• Gardening: Digging is OK as long as you pace yourself.
• Dancing is a good aerobic workout but no overhead arm movements or heavy stamping- what am I to do?
• No scuba diving.

Friday, April 18, 2014

Expectations


Ain't that the truth, well the truth as I've discovered. Dastardly expectations, they'll bring you down every time. Obviously it's important to expect high standards of yourself, but I've certainly come to realise, the hard way, that you can't count on your life's plan staying on track.  The weight of crushed expectation is a an albatross for sure, if you're thinking in Ancient Mariner terms that is.. 

Gosh, for a moment there I was sounding darned preacher like, well wrap me up like an evangelical giftbox, and send me to the closest prayer tent!

In more important news, I definitely feel improved today, I think my chest infection is clearing.  Although, admittedly, I did give in and apply more patches.  But hopefully, the surgical pain will have diminished enough by next week, that I won't need to do this again.  It's raining and stormy outside, the leave whirling through the air in an autumnal maelstrom. It's nice being in bed today.

Thursday, April 17, 2014

What if it's not?

The pain is really bad today.  It's hurt a lot since taking off the bandages, and I only have the smallest 5mg morphine patches left to apply. I’m in too much pain to get in the car to go to the doctor.  I have to wait until after hours so that I can call for a home visit doctor, and I’m not sure that they will get down in prescribing me opioids.

My chest infection won't go away.  It’s been five weeks. It’s making my chest hurt deeper below, and way above the flutter of the stimulator. I'm at 97% of the set parameters of my stimulator, and I'm freaking out a little bit.  I’m crying, and alone, in bed. Although, I s’pose, this is usual. I’m scared, and anxious, dare I say it, fretful.

Fretful, that this is not it.  Fretful, that this is not the answer. Fretful, that the pain is coming back, or that it’s never gone, or that it’s never going away. And that’s not something that I can contemplate.

I’m trying to maintain my lifelong faƧade of okay. I just can't tell Mum, she's just so, so happy that I'm ‘better’. She’s giddy with delight.  It’s her birthday. She's convinced I'm painfree, and that this is it forever. I'm scared that it's not.

In more depressing news, I discovered last night that I shall never trampoline again.  'Tis a sad day indeed.

Wednesday, April 16, 2014

I couldn't do it to you...

I intended for this to be an open discussion on experience of, and the recovery process from the spinal cord stimulator surgeries.  I found other people’s stories to be so helpful when I was considering whether this would

Until today.

Today was a day that dressings were changed, and I thought I’d duly grab the opportunity to capture the moment, and the scarring, for time immemorial.  

I will save ye all from the fate I have suffered.  For it seems that there is truly no end to the indignity, nor to the hardship that I must endureth. I’M HIDEOUS!!!  

Reviewing the photos, particularly of the implant scar, gave me that feeling one only feels when one has been sick in one’s mouth.

On the upside, I'm shuffling a little faster.

Instead, I bring you this delightful, and un-nauseating, picture of our doggy.  You are welcome.





Tuesday, April 15, 2014

28 Days without a shower and I'm haiku-ing


The water splashed
but not on me, no not me
You, you're glistening.

Disconnect in pain
I'm alone. You're all joined
No sorrow in you


Saturday, April 12, 2014

Les Accoutrements

I’m feeling slightly improved today, a lightness of being, like my happier self is starting to hover above.  Perhaps this oddly floaty, alternate self, is a sign that my chest infection of month long residence is finally departing, and maybe the swelling from all of the surgeries, is just a little less swelly. 

I thought maybe I'd share the items that come with being part cyborg.  One is never quite alone while being chronically stimulated. Euuwww, does that sound rude?? hmmm.   


Of course there are all of the internal parts, the wires permanently affixed along the spine and the dastardly nerve, and the rather too large magnetic base device, in my rather too large, ahem, base. And then, there are the carry-on items. (complete photo below).  The programmer itself actually resembles an old blackberry.



It is very, very large, much larger than I expected, and you even control it old school, with a stylus.  My lovely technician has assured me that this is the prototype model, and they are currently designing a much smaller model, but for now, it’s something to laugh about.

 Even more hilarious, I actually turn it on by holding it up to the base device in my, well you might say right hip, upper buttock, or derriere, whichever way, I will never stop giggling. 

Even, even, more hilarious than that, it makes a “Bleeeeeeeeeeepp!” sound with an upward inflection at the end like it’s delighted to be stimulating with you. 

My lovely technician has set parameters having consulted with me, and if you look carefully at the picture, you can see I’m at the upper end of those parameters.  This is likely attributable to my chest infection making everything so much more painful. It’s likely that we’ll have to have another session in a week or two once I’m disease free to set new parameters.  

The techs control everything from their own stims and ipads.  The parameters they can set, and therefore the possibilities, are endless- it is just phenomenal. 
The little black square in the right corner at the back of the picture is the magnet to end all magnets, it’s why I harbour a desire to be called Magneto.  If for some reason the programmer won’t work, you can hold that magnet up to the base device, (read my butt), and it will turn the stimulation off.  

At the moment, it won’t turn the stimulation on again, but they are working on that capability too. I was forewarned I might a feel a buzzing sound, or a feeling like a jackhammer, or something like a TENS.  I feel none of those things.  Sometimes, especially if I sit up or lean forward, I feel a slight flutter in my chest, but amazingly, most of the time, I feel nothing at all. 

Love it.


Friday, April 11, 2014

Once upon a time

There was a vibrantish young lady, who held the city in the very palm of her hands. She skipped, and she danced, and she delighted through the days and nights, enjoying all of the things that an accomplished life could offer.  She was surrounded by a wide, but very close circle of friends and family who skipped and danced and delighted through the days and nights alongside the young lady.

One gloomy day, a day of endless rain, a portent of things to come, an untimely illness struck the young lady, struck so severely, that she could no longer skip, or dance, or delight through even one day, and certainly not through the nights.

The young lady cried, and cried with the pain so agonizing like she'd never known, until eventually, she was sent away, and she was examined by everyone who was thought to have been imbued with the knowledge of everything, over and over and over again.  

And the young lady cried and cried. A thousand treatments were tried, over, and over and over again. And there was no skipping, or dancing or delighting through the days, or through the nights. 

And over, and over again, this pattern repeated.  And the young lady felt alone and without hope.

But then finally, almost two long years after the young lady was so stricken, a wonderful proposition was suggested to the young lady, terrifying and exciting in its finality, a proposition that might finally lead her to once again skip and dance and delight through the days and the nights.  But for now, it's led her here, to the beginning of this blog.

Wednesday, April 09, 2014

Some go up, Some go down

I mistakenly thought I’d had an epiphany the other day. I was awake and aware and the world was bright. The edges were crisp. The grass was green, so green.

I was in a whirlwind of change and heightened...yes!  And I knew what I needed to do, what was going to happen, why it was meant to be.  It was going to be alright.  I'd been viewing the world through soot coloured glasses for such a long time, and as the pain withdrew its agonising grip, I saw munchkin like Technicolour, ruby slipper Technicolour, all the cliches Technicolour!  And then each time I coughed, the pain returned, visceral, raw, each time I coughed, I felt another stab, and the fear, another glimmer dashed. It’s raining grey.

Wednesday, April 09, 2014

A week or so...


Left foot, right foot, left foot, right foot...  When I say that in my head, I have an hilarious sample from The Family Guy running through my mind.  It works regardless though. Each day plods along pain in, pain out, oh no- no pain out, just pain, relentless, tiresome, I'm going to follow you until you're not there anymore, pain.

In light of my previous post, I asked my surgeon how long it might be until I might be able to shower, and he asked me to travel to his rooms, over an hour away, for post-surgery wound inspection.  I stood my ground like the crybaby I am, impossible.

Instead I was allowed to see a local doctor and report back. I completely forgot that I was entitled to a free home doctor visit under my most excellent health insurance policy, even though I happened to be on the phone to the health insurance company when it was time to leave for the appointment. 

So, the upshot is, it's been a bit rough for me post car trip, although it was only twenty minutes return.  The implant device is implanted in my right buttock, making for a right uncomfortable car trip, even with my lovely latex pillow along for the ride.

But I‘ll be able to shower in  a week or so.

Tuesday, April 08, 2014

Unkempt

I've been rather unkempt lately, given the surgery, and being forbidden from showering because of the surgery for the last three, and the next however many weeks. Yes, unkempt and morose, perhaps one leading on from the other.  Somehow, I've thought it appropriate that I exploit my unkemptness by reading poetry (apologies to all poets).  Lots of poetry.  The great anthology of great poetry. Lots of greatness. And lots poetry. I'm not entirely sure why I associate the two.  Maybe it's the poverty and/or adversity I'm sure all good poets must undergo, either willingly, or not, to maser their art.  There's also garrets.. although why I'm not sure -  they should surely be associated with artists.. but hey.. this is my imperfect mind.

In some ways it's positive, within minutes I feel learned, and special, I can spout occasional knowledgeable thoughts about writers and concepts that other people perhaps cannot.. but mostly, I feel like a wanker.


Sunday, April 06, 2014

I'm living up to my name ...

It was either going to be that, or Magneto!  Magneto, sounds so superheroish, and I am rather fond of capes, be they practical, or fashionable.. but as I lay here.. nibbling the ears off a bunny and wearing a princess headband stolen from the head of my two year old niece, I think perhaps I currently lack the requisite gravitas  to pull off the aspirational Magneto.

So, to anyone interested in the SCS surgery, five days after the event I am significantly improved. Had you spoken to me just yesterday, you would have had tears for a rather unsatisfactory response, and the day before, howls of agony.

Yes, there's no whitewashing here, those doctors are tunneling right up your back with a rather thick metal skewer and then digging a grave to lay to rest your implant which will likely be at least the size of a giant matchbox.    Owwww.

The surgery itself was fine.  It was performed under a general anaesthetic, and the local anaesthetic injected into the incision sites lasted the first night... but it was all downhill from there..

It is, however, without question, most exciting that my butt is programmable AND makes a beeping noise.   Worth the additional pain and morphine? Yes, this is most satisfying.  I bid you, ein guten nacht.

Tuesday, April 01, 2014

The end of the beginning and the beginning of the end

When I was small I wanted to be a writer.  I thought reading was the greatest thing in the world, and if I could just be the creator behind the magic that leaped from the pages of so many of my beloved, dog eared books, well, that would just be plain incredible.
And then, I don't know what happened. I think I became too generic, or maybe too lazy, or maybe both, but lately, I've been having amazing dreams, which demand that they are in some way recorded, indirectly or otherwise.
And here I am, writing a blog ostensibly in the name of my soon to be state, due to my soon to be implanted spinal cord stimulator (SCS). Finally driven to action by illness and desperation.
I've found very few blogs on this subject, and for those I have found, I am grateful to them for sharing their stories. Their candour assisted me in determining to proceed with such a momentous decision. It's been almost two hopeless, relentlessly pain filled years since I became sick with pneumonia, which left me with the debilitating chest pain which the SCS promises to cure, and it's been two weeks since the trial surgery, which was an astounding success.
I'm overflowing with anxiety and excitedness, positivity and domesday thoughts, and I don't know how I can possible express everything or anything at all.  So, I guess, what I'll do for now, when there's just one more sleep to go, is just say to myself that I'm just going to do it one word at a time…  and come back to you on the other side….part cyborg, well you know, I just like the drama.