What Epilepsy Has Taught Me…

Image result for 20 candle

So, it’s officially been twenty years since my first tonic-clonic seizure and the start of my epilepsy journey.  (I’ve also just celebrated a rather big birthday…but let’s not talk about that!)  In honor of the occasion, here is a list of things that epilepsy has taught me…

 Life is tentative.

We are forever being told how ‘precious’ or how ‘short’ our time on this mortal coil is.  As cliched as these statements are, coming round from an episode of status epilepticus really hammers home their truth.  Our lives are made up of that tiny dash that will eventually exist between two dates on a gravestone, appreciate that while you are here and fill that punctuation mark with as much as you can.

Live like your epilepsy doesn’t exist (as far as possible). 

This one will help you retain some semblance of ‘normality’.  As far as I am able to, I try to make major life decisions as though epilepsy isn’t a factor.  Yes, I might not swim alone (I’m completely uncoordinated anyway, so that’s not exactly a loss), but I want to look at my overall situation and believe that epilepsy hasn’t dictated the big things.  So I’ve managed to travel in spite of the uncontrolled seizures, I’m on my third degree because academia is the great love of my life, and I get up every day and try, even if that day all I am capable of is making a cup of tea.                                                   

SAM_1536.JPG

But you still need to find a way to co-exist. 

Even if you don’t let it dominate your life and your identity, epilepsy does still need consideration.  If you’re intractable, like me, and if you end up with epilepsy chronically, it will become a separate aspect of yourself which you have no choice but to assimilate.  Your association with it becomes like a fluctuating relationship, perhaps like that between a parent and an unruly toddler, but a relationship nonetheless.  It’s important to recognize that your feelings about the condition will be ever-shifting, and some days weeks and months will be worse than others.  Better periods will inevitably follow difficult moments, you are not the only one, hang in there.

Some people won’t understand.

Dealing with such a stigmatized condition, means that sometimes you will encounter the judgmental and ignorant of this world.  Equally, you’ll come across those who are well meaning…yet seek to control your life and journey with epilepsy.  It’s tempting to project the negative back onto yourself or to absorb the ‘advice’ of those trying to clip your wings.  YOU are the one living with this illness, only you get a say in how you approach it.  Blank out the white noise and value yourself enough to step back from those who are not supporting your growth.

Those who do, will amaze you.  

I never cease to be astonished by the generous gestures my family and long time friends make.  Whether they are cooking for me, or helping me source an holistic option, or showing up at the hospital, they let me know they are in this with me.  My tribe are so truly precious.

Image may contain: 3 people, people smiling, people sitting

(Irish girls!)

Your timeline won’t always look like everyone else’s, but that’s okay. 

As much as a seek to deny epilepsy’s power over me, sometimes it needs to be the centre of attention for a moment.  (Admittedly, I’m not so great at this!) This illness forces us to negotiate a unique set of challenges which can throw off our trajectory, but it happens and it’s important to acknowledge that it’s alright to step back when necessary.  Pace yourself, in the scheme of things, it matters little, you’ll get where you want eventually.

Image result for life goals

The ‘Big Moments’ won’t always be your big moments.

Those experiences that the media tells us to strive for, the iconic milestones to superficially emphasize – the prom, the graduation, the wedding – aren’t always going to plan.  Epilepsy doesn’t play by the rules.  I remember my school formal being preceded by weeks of intense seizure escalation.  There had been so many nights where I had barely slept.  I didn’t want to miss the event, but thanks to epilepsy, I didn’t have my hair professionally done like the other girls. Thanks to epilepsy, I needed to cancel my colour appointment a few days previously.  I managed to put on a little make up, but looked ghost-like, unlike all of my professionally tanned friends.  And, of course, thanks to epilepsy, I was also the first to leave, already feeling the threat of another seizure looming in the taxi home.  But, you know what?  Looking back, I made it there, and that was all that mattered.

Your ‘Big Moments’ will be the little moments. 

This is the thing that I love most about this epileptic life.  The most wonderful times of my life have been minute, ephemeral moments, moments that most would overlook.  The days where I laugh until I can barely breathe and just briefly forget about the burden of this illness.  The moments where I walk down the street and feel the sun on my face or the wind in my hair, when I stop to admire a fluttering butterfly.  Momentarily, I feel alive, I exist without fear of the unpredictable.  It might sound strange, but thanks to epilepsy, and the shadow world it’s exposed me to, I really taste my coffee; I dance with more abandon; I care so much more deeply.  Everything is so much more intense that the smallest detail can make my day.  My closest friend tells me that she loves how I am ‘always in the clouds’, and in many ways it’s this parallel universe of appreciation that posits me there.  It’s the greatest gift that epilepsy has given me, a greater capacity to appreciate the light of this world, having glimpsed the darkness.

DSCF0551

(With the little sis in Roma)

 

And on that note..if it’s another twenty years, so be it.  I’m ready.

Ria

x

 

Advertisements

Trying to Find the Light…

I try as far as possible to keep this blog uplifting, so sorry I’ve not been able to post much in the last few months.  The truth is, most days there has been so little to be thankful for, but perhaps frustration is what someone needs to hear.

If you’ve been following me on other channels you’ll know that I managed to fracture my ankle, come down with a bad infection and vertigo in the last few months.  Yeah…I’ve been a total liability… The result of this is I’ve spent a great deal of time alone at home. Of course, thanks to vertigo’s impact on my vision, for once in my life I’ve not been able to distract myself with exorbitant amounts of reading and writing.

As grateful as I am for my usual mobility and academic capability, being relegated to reclusive status has brought up all the negatives that I am typically so adept at dismissing. Those bigger questions about this epilepsy life, that inner terrified voice that I ordinarily drown out through a voracious intellectual curiosity that spans the most abstract of topics.

The questions like ‘what now?’ The fact that I am all out of treatment options, bar cannabinoids, which the doctors are medically quick to mention and legally hesitant to follow through on.  The realisation that my neurologist of five years believes that he can now offer me nothing and I belong with CBD prick teasing epileptology team.  The deep-seated fear that this illness will steal any chance I have at love, because who could possibly understand this half life?  Or even rob me of my opportunity to a family of my own.

It’s not to say these thoughts aren’t eternally present, aren’t a beautiful gift that comes with epilepsy, that they haven’t sat with me at many times over the last 20 years… but they’ve become a little too pronounced lately.  Sometimes it feels like epilepsy is the most toxic relationship have ever had.  This illness has broken my heart a million times over and probably will a million more.  Each time some how marginally more crushing than the last.

I dare say this feeling is typical.  I’m sure for all my epilepsy frustrations and fears, there are 65 million others who can relate.  65 million who understand the way this illness can permeate our thinking, consume our reality, its uniquely ubiquitous, isolating quality.  And yet it’s important for me to remember my journey could always be worse.  For some, there is no literary escapism, there are no midnight phone calls with the bestie.

So, I’ll feel a sorry for myself a fraction longer, then I’ll take that into consideration and put the mask back on.  I will impatiently look forward to again silencing epilepsy’s power by consuming quality literature, political theory. medical journals and occasionally conspiracy theories.

 

Ria

x

(this is probably riddled with errors, but..vertigo…)

“Seizurism” and Being Benzo Barbie

I wasn’t entirely sure that I should write a post about  my recent two week hospital stay.  It’s undoubtedly going to be a controversial one.  During the admission I had a relatively traumatic experience with one ignorant nurse.  It illuminated two complex and utterly humiliating issues which those of us with complicated, intractable focal seizures must negotiate when met with uneducated staff.

Firstly, what I’ll term “seizurism” and secondly, addict insinuations.

IMG_9526 (2)

I agreed to the admission after three weeks of escalating nightly focal seizure clusters,  followed by a twenty minute focal seizure with speech arrest in the street.  I agreed to the stay, at my neurologist’s hospital, because I trust him implicitly and have had very supportive experiences on the hospital’s public ward in the past.  I could have been placed on a seizure specific ward across the city, in my epileptologist’s hospital.  But surely the staff on any neurology ward would have encountered complicated epilepsy before and been able to treat it respectfully?  Be capable of helping me break the cluster cycle and finally get some sleep?

Well that wasn’t to be the case on this particular admission.

Although my neurologist was, as always, wonderful, he wasn’t always present.  In his absence, across one weekend, I was in the care of a night nurse who clearly lacked knowledge of complicated seizure disorders.

It emerged at this time, that there was a mis-charting of my medications.  While I typically use rescue medications on an ad hoc basis in correlation with seizure frequency, my chart reflected I was to receive only one 1 mg dose every 20 hours.  A dose that I’d reached tolerance level on before even entering the hospital.  It seemed that the nurses who’d been bringing me subsequent night doses during the week, had done so after confirming with a ward doctor on duty.

Now, I feel I need to precede certain observations in this post by stressing that I am capable of generalizing with the best of them.  I’ve had some nasty tonic clonics in my time. I understand how dramatic they must appear to a medical professional and how urgent the need for intervention can be prolonged episodes.   Equally, I fully comprehend how torturous they are to experience.  I have experienced status epilepticus.  I have come round many times with bloody noses, split lips and in agonizing muscular pain.   I am grateful every day that my tonic clonics respond to medication.  Therefore, this post is not diminishing the severity of this seizure type in any way, but highlighting certain specific prejudices that can accompany problematic focal seizures.

IMG_9528 (2)

I’ve spoken before about the right-sided motor seizures that originate in my left frontal lobe.  If I were to explain their appearance to you, they are something akin to a tonic-clonic but occurring on only one side of my body.  Essentially, repetitive stiffening and contraction of the muscles, very obvious convulsions.  They do not inhibit consciousness, but can cause speech arrest.  They typically come in frequent bursts of 30 secs, clustering rapidly.  With sleep deprivation, they eventually move towards something like a focal status epilepticus and transition from being nocturnal to occurring at any time of the day.

They might sound innocuous, a 30 sec burst can’t be that bad, right?  Wrong. They’ve floored me in the street.  I’ve injured myself in the shower.  I’ve needed to carried out of my house by FOUR paramedics (the seizures were so powerful they were concerned I’d kick a paramedic down the stairs on a traditional stretcher) as they occurred every  1.5 minutes for over 2 hours.

The refusal of this seizure type (and several other of my seizure types) to respond to traditional anti-epileptic drugs means I need to medicate with benzos at very early points in the cluster cycles to avoid sleep deprivation and escalation.  I understand this, because I’ve been doing it for nearly twenty years.  I have observed these seizures in every circumstance; I have made the right choices in timing rescue medication and the wrong ones.

IMG_9530 (2)

(PC Epilepsy Avocate)

So, with this background in mind, on my first night with her as my nurse,  my laughable 1 mg of clonazepam wore off after 2 hours.  I awoke with several sharp bursts of seizure activity.  She eventually responded to my bell and refused me further medication.  I asked for a doctor.  There was none on the ward, apparently.  And I knew, right then, that I was escalating.

It didn’t help that I wasn’t on an EEG monitor or video and, therefore, self-reporting seizures. I was in a room of four beds, which on that first night had only one other patient in it.  The nurse in question poked her head into the other end of the dark room infrequently, standing momentarily about 8 metres away from me.  I had three blankets over me and was seizing only in bursts.  She couldn’t possibly have been able to tell whether I was seizing or not, especially with such irregular checking.  Any time I rang the bell, the seizure was over before her she arrived.  I gave up on reasoning with her.  I slept very lightly for about three hours, frequently awoken by the seizures.  I believe there were 26 seizures within those three hours.

As the night had crept on I was so exhausted that I had given up on reporting them.  I could feel it, her “seizurism.”  Her attitude that a focal seizure was essentially a non-event, it wasn’t a tonic-clonic episode.  It didn’t matter that for me, it was still irregular activity that needed to be immediately addressed.  That it was my brain and body suffering through these episodes.  It didn’t mean anything that I’d explained that my partials would escalate, that they would become debilitating if under-medicated.  That I’d pleaded with her.  No, in her uneducated, seizurist opinion, a focal episode certainly didn’t require rescue medication! Didn’t warrant a doctor to be called, a second opinion sought on my clonazepam dose.  I knew that in her mind, perhaps these incidents hadn’t really happened since she hadn’t personally borne witness to them.  And I sensed the other unspoken, that as sweet and barbie-esque as I looked, I was a pill-popper, a benzo addict, who just wanted the drugs.

And all of those suspicions were very much confirmed on night two with her as my nurse.  During the day, the junior doctor on duty had admitted to not feeling confident in changing my medication chart when I had such a “big dog” as my neurologist! But she impelled me to call the nursing staff as soon as I felt close to seizure, to have them to deal with my clonazepam dose as the situation was arising.  So as I tried to drift off to sleep at 11pm, and immediately felt my heart rate rise – one of my pre-ictal symptoms – I called my friend from the previous night.  And all hell broke loose.

seizurefocus

(PC myDr.com.au)

She returned as I was walking to the bathroom.  My body felt tense, I postured, holding my right arm across my body, my hand on my left shoulder.  Brisquely, she informed me “No.  You won’t get that medication until 1am”  She’d obviously misinformed me about the time-frame on the medication chart, that didn’t make sense for 20 hours, or even 24.

I became frustrated.  Still standing there, posturing, I made my point to her.  I tried to advocate for myself.  My family were tens of thousands of miles away – if I got any weaker, any sicker, any more sleep-deprived, no one would stand up for me.  I needed to stress my point.

As I explained to her that she had misinformed me previously regarding the charting, that I wouldn’t sleep seizure-free without medication, that I was exhausted, she reached out and clamped her hand around my wrist.  The one that I’d been posturing so uncomfortably.  I asked her to remove it, she didn’t.  I went completely against my natural character and asked her more vehemently, more loudly.  She accused me of being agitated, as she still refused to move her hand.  In shock, I explained that anyone in a pre-ictal state is likely to be emotional and should not be touched.  That she should understand this.

 

epilepsy-and-tuberous-sclerosis-12-728

(PC: Epilepsy Action Australia)

Our disagreement brought other nurses, to whom I explained the situation.  I understand that they are bound by certain protocol and I related this to them.  But impelled that I was exhausted and extremely concerned that I would escalate with continued sleep deprivation.  I imparted to them that I knew the dangers of excessive benzo use and always try to keep clonazepam use to a minimum.  (I’ve been using it for almost 13 years).  I knew by their reaction that they too didn’t fully comprehend how difficult focal epilepsy could become, I saw that same seizurism in their faces.  I still tried to explain, to reason.  Somewhere in this discussion, the nurse who’d prompted the issue, announced that I’d clearly been pretending to have epilepsy while admitted.  Thus confirming that everything I’d suspected about her opinion was true.  Her view discounted various other witnesses, including other members of the nursing staff in that hospital.  It disregarded years of irregular EEGs, an irregular PET and the opinions of two world-renowned epileptologists.  It broke my heart.

So I got the medication early that night, but I didn’t dare ask for a second dose when it soon wore off.  The seizures came and came, over and over.  I pulled my curtain across and didn’t press the bell.  I stopped being capable of advocating for myself over the next day.

By the Monday, I couldn’t make it to the bathroom without a seizure on the floor.  I often needed to be helped back to bed.  Strangely lots of patients and nurses witnessed these incidents!  By the time my neurologist intervened, I felt the weakest I ever had on account of epilepsy.  When the chart was fixed, no amount of clonazepam would break the cycle for more than a few hours, the damage had been done.  I’d escalated too far, was too sleep deprived.  It was one of the lowest points in my almost twenty years with epilepsy.  I knew that this would never have happened at home.

It wouldn’t have happened without seizurism, it wouldn’t have happened without the nurse’s deduction that I was a pill popper.  I felt demeaned and disregarded, invisible.  In this nurse’s opinion the focals that had been utterly destroying my quality of life for such a long time, were essentially nothing.  How could they be nothing when they could become so utterly debilitating?  Aren’t there over 40 types of seizure?  Shouldn’t they all be considered notable? Hadn’t all seizures been created equal?

It left me with so many questions.  60% of epilepsy suffers have focal epilepsy with many of us also prone to generalising.  Seizurism is certainly not something which exists within the epilepsy community – we support one another no matter the diagnosis.  Yet why are those of us who experience partial seizures, most of us, exposed at one time or other to this kind of reception in the medical world?  Why the prejudice?  Is it because our seizures often sound atypical?  Frontal lobe seizures are frequently short in duration – a fact that I explained to the nurses in question when they told me it was difficult to medicate what they had not witnessed.  So in the scheme of things, my left frontal lobe focal seizures aren’t that atypical.  Yet, why are we focal seizure sufferers still, at some point in our epilepsy journey, more likely to be written off as having psychogenic seizures?  Brushed off with explanations like ‘migraine’?  Have certain seizure types go completely un-medicated? Only to have an epileptologist later confirm our diagnosis. Why is this not an issue we are discussing more?

Eventually, with melatonin, I slept.  the cycle broke.  The second I felt strong enough to make it into a cab, I asked to be discharged.  I certainly hadn’t recovered enough to be alone, but I felt safer in control of my own medication.  I might be feeling physically better, but emotionally it will take a while.  That interaction, that powerlessness, opened me up to the shadow side of having focal epilepsy.  A world where we are unseen and unheard, even by members of the medical community.

I know that I was somewhat unlucky in my dealings with this nurse.  But the incident still highlighted to me the importance of talking about seizures, and not just our tonic clonics.  We need to educate people, including some medical professionals, on focal episodes.  So that we are better supported and no one comes away from any encounter feeling as isolated as I did two weeks ago.

 

Falling Through the Cracks: Finding The One (Neurology and Epileptology wise!)

So, as I have spoken about a previous post, I recently spent a year back in the UK.  I’ve already related a negative experience I had with an anonymous epileptologist there.  What I didn’t mention, was that that appointment had taken place in October 2015, that I was told that I’d be sent an appointment for a few months later, and that it never came.

522

Not that I chased it up.  I mean, how could I?  And why would I?  When the consultant refused to look me in the eye?  When he suggested, after being pressed by me, that I’d never find the right medication, or qualify for surgery?  When he offered no options, no debate, no discussion? When he decided to have this conversation with five or six strangers present in the room?  When his attitude was essentially ‘this is your life, you need to deal with it, and actually, this conversation is making me a little uncomfortable right now.’ When I left the appointment and literally no one from his team checked on me…

And then I moved back to Australia and returned to the superior treatment I’ve come to expect from here.

But then it came.  A few weeks back.  A letter.  Sent to my parents home in the UK, the address of which I’d left with the hospital in question.  An invite to a telephone appointment with their epilepsy nurse!  I don’t believe I’d ever met her in real life.  I began to tally things in my mind.  Eighteen months since I’d last heard from this hospital.  Eighteen months where they would have known I’d been having uncontrolled seizures.

518

Nine months since I’d returned to Australia.  What had happened in those nine months?  My seizures had been peaking at two hundred a week at one point.  I’ve easily had four neurology appointments; maybe six phone calls with my neurologist; two emergency admissions; nine days in hospital; two epileptology consultations; two meetings with the epilepsy nurse; two endocrinology consultations (I’ve been using hormones to help control menstrual triggers); three or four adjustments of my primary medication; trialed three new medications; added a new, faster-acting emergency drug; have had neuro-psychological testing; updated MRI and PET scans and received a more comprehensive diagnosis than ever before, with an actual lesion location!

IMG_7744

(Amazing Epilepsy Centre at Royal Prince Alfred Hospital, Sydney)

Yes. In the UK.  I would have still been waiting.

And this is not an NHS bashing post.  I have so much respect for the British Health Service.  It is a noble concept, a wonderful institution.  Arguably, sometimes more in theory than in practicality.   Yet, members of my family work as doctors and nurses in the UK; they are committed, overworked and underpaid.  Still.  This hospital had let me down.  And one of the world’s leading epileptologists had let me down.  I’d fallen through the cracks.

I cried.  Not for me.  But for everyone else in the position of waiting.  Of having no answers.  Of feeling like a faceless number, in front of an exhausted doctor.  Epilepsy shouldn’t fall through the cracks! How could the patients of such a medically complicated and stigmatized condition go unnoticed?

I cried because I know what that feels like.  I remember what it felt like to fall through those cracks.  To never have answers.  To not have any contact between appointments which, due to demand, were sometimes six months apart.  I remember long, long nights in the UK, in my teens, before I even was offered emergency medications.  The motor seizures on my right-side would get into patterns that I couldn’t break.  Nights of them happening every two minutes.  Every time I shut my eyes, waking me up.  Non-stop.

IMG_8185

I’d sit up all night, trying to keep my eyes open, trying to focus on the television, a book.  The house was silent, aside from the tick, tick, ticking of the clock on the mantle. The world was so quiet outside.  The night would prove so very long and my muscles would ache unbearably.  And then I’d wonder – ‘Will this ever get better?’ ‘Will there ever be answer?’ And the one that I came back to over and over, that truly haunted me – ‘Where is the doctor that cares? The one who knows me?  My story, my attitude, my lifestyle.  Who goes to bed and genuinely wonders how my night is? Is he/she out there right now?  Are they asleep, awake, what are they doing? Where is MY doctor?’

It haunted my thoughts for a long time.

THE ONE.  It genuinely preoccupied me,  I was more obsessed with finding my medical one than any romantic one.  As I churned through neurologists in the UK, I found I was getting nowhere.  I began to think THE ONE, medically speaking, would prove to be as elusive as any romantic one.  Then I came to Australia in 2009.  A few years later met a boy, who was most definitely not the one, romantically speaking,  but whose mother offered me a name.  A name of a neurologist about whom she’d heard wonderful things.

I can’t say I expected much and in those first few appointments we were definitely sizing each other up.  Me, because I’d had so many questionable doctors in the past and him, because I was an intensely opinionated, complicated epilepsy patient when his specialism was MS.

And yet we gelled.  We came to trust one another, to understand and respect one another’s personalities.  He recognized that after so many years of languishing without an explanation, I’d educated myself.  Our consultations became increasingly like discussions.  He’d suggest several potential options and ask me my preference.  I’d point out the pros and cons of each medication or idea and reach a conclusion.  He never doubted me.  At times he shook his head at my intensity, but  I was never contradicted or patronized. On the contrary he’d reassure me that I understood my body best.  He’d tell me the truth – that I could be a sudden death risk, that I was probably one of the 30% who’d never find the right medication, but he still wouldn’t give up on find the right drug.

When I came back from that awful London consultation, we began to work with other doctors, epileptologists.  I’d visit the amazing comprehensive epilepsy centre,  and be offered detailed treatment plans, but I’d come back to my neurologist and we’d put them into practice together.  If I needed an emergency admission, I’d ask to be taken to his hospital over my epileptologist’s.  As amazing as my epileptologist is, and as specialised as his knowledge is, he’s a busy man.  I know my neuro will prioritize me.  I know he’ll intuitively understand what I need, even when I’m not coherent.

IMG_8191

(The lovely view from my bed on my last admission!)

We’ve had emotional conversations.  On Phenobarbital and drugged out of my mind, I was admitted after three nights of sleep deprivation and seizing.  After a ton of rescue drugs and a few hours sleep he came to my room.

He looked at my dopey little figure on the bed.  

Turning to a nurse he said: You know it’s been like this since she was ten years old?!

To me: We’ve been in this together, all this time.  If I ever seem frustrated, if I ever sigh, know it’s not you, it’s just that I wish I could help you.  I wish you’d never walk through my door again.  You’re a young woman.  You have so much life to live.

I wanted to say ‘No.  Not all the time.  Not all the time you just mentioned.  Because first, I looked for you.  I waited for you.  I sat up long nights wondering when you’d come.’  

But we’ve had hilarious conversations.  While trialing a switch from Tegretol to Trileptal in hospital, he’d had a weekend off work and not seen me for a few days.  I had my own concerns that sodium levels can be such an issue on the drug – and that in itself can lower seizure threshold – that I’d been getting the night nurse to give me the results of my blood tests over the weekend. After a messy seizure filled night where I’d had rescue medications twice, he came into my room at 6am.

Him: Your sodium levels are too low.

Me (groggy and half-asleep): I know.

Him: ..Of course you do..  

Him: You’re coming off the drug and I’m putting you on immediate fluid restriction.

Me: I’m already doing that.

Him:  You’re already doing that….

We’ve had a million moments that have verified the extent of our unique rapport.  But the clincher, the moment that he truly confirmed that he was who I’d waited for, took place in a recent appointment.  Looking at me, he observed:

I don’t really know what it’s like for you.  I go to bed at night, assured that I’ll sleep through. That I’ll be rested in the morning.  I know that you don’t have that luxury, you don’t sleep.  You don’t know how many times this will wake you each night…

The doctor that really sees me, the one I’d waited for, whose thoughts go to my night, who wonders just how many seizures there will be.  In that moment, my thoughts went to every horrific, prolonged, tearful, seizure-filled night that I’d endured.  All that internal questioning of where my doctor was and if he even existed.

Between him and my epileptologist, I finally have a wonderful team.  A team I can depend on for answers.  For support.

For the others who don’t have that privilege?  Who are still waiting on a letter?  I really fought for you on the phone to the NHS the other day!  Keep searching, keep looking, never accept less, never, ever give up hope.  Even on those dark nights, remember, asleep or awake, your consultant is out there.

Ria

x

Deadlines and Burn out

image

Sorry for my recent silence.  I’ve been focused on my studies and I’m sorely paying for it now.

I’ve have a major PhD review looming.  Of course, I never do anything by halves.  Everything receives one hundred percent commitment.  I blame epilepsy for this obsessive trait.  It’s hilariously counter-intuitive, given the impact that working twelve hour days, seven days a week has on my body.   But, that’s what happens, when you feel like the scientific community, and society, assumes your productivity will be less.  That you’ll achieve less, on account of your illness.  The combination of seizures; prodromes; post-ictal tiredness; medication side-effects; interrupted sleep; social stigma; the psychological implications; are supposed to coalesce.  To make me less functional than the next person.

But I refuse.

In the words of my supervisor I ‘over-compensate.’  I work harder and longer than everyone else. I set unattainable personal standards.  My intellectually formidable professors offer me the most affirming feedback, and yet, I’ll still be there at 2am, seeking perfection.  Cursing myself for ever using perampanel, for all the months of confusion and forgetfulness on it.  Castigating myself for lost time.  I can’t just excel for someone with a chronic condition, or succeed to the extent of the average, healthy individual.  No, I have to parallel an excelling, healthy person.

Until it’s too much.

So last week, my body made a solid effort at a tonic clonic.  It started.  I remained in a bizarre semi-conscious place, understanding that the seizure wasn’t entirely spreading.  But it wouldn’t stop.  I couldn’t communicate.  I could only hang on, wait, mentally begging it to stop.  When it eventually did, I knew something was wrong.  It wasn’t just that I was overworked.  No.  The Tegretol should have prevented this.

I went with a swift Tegretol increase and figured there was something additional going on. What had I been ignoring while I was so consumed in my work? Feverish nights. Incessant trips to the bathroom. We all get a kidney infection now and then, especially us girls. I’d been so preoccupied in proving my capability I’d forgotten to listen to my body.

As it turns out it was nasty and pretty antibiotic resistant. So after a week of fever and seizures I gave up and went for IV antibiotics last night. And finally slept! Still with seizures, but that’s life.

I have had a few days off though! I’ve given my mind some much needed rest.  Tomorrow I’ll start to study again and contend with those unrealistic expectations, that sense of epilepsy inadequacy. But that’s tomorrow. Right now I’m grateful to be a little better and up to posting something to you all!

Ria

x

Trade offs

067

Last week I had the opportunity to assist with some research into well-being with epilepsy.  As part of the background to the project, I was interviewed on my feelings about life and my illness.

As aligned as I am with circumstance most days, retracing episodes from my childhood was a surprisingly emotional experience.  I’ve realised that although I’ve come to speak often and loudly about this affliction, it is typically in medical terminology.  Conversations with family and friends are littered with specifics.  Recently, asked by my epileptologist, ‘How do you feel?’ I  launched into an assessment of the pros and cons of perampenal use.  He cut me off, ‘I know the options.  I’m asking, how do you feel?’  Discussing the emotional aspect of certain events, with the epileptologist, with the researcher and in this blog, is certainly new territory.

And yet, it was a useful reflective exercise.  The thing that the researcher seemed most intrigued by was what she referred to as my ‘trade offs.’  Those little concessions that I’m prepared to make in negotiating life with epilepsy.  Most of them, she delicately ventured, seem tied to my sense of self.

I think the one that shocked her most was my use of Tegretol.  I’m  familiar with this medication after eighteen years of use, specifically for nocturnal Tonic Clonic (Grand Mal) seizures – those classic types everyone imagines. Tegretol has unfortunately never had an effect on my other seizure types.  By now, I’m well aware which dosage works to prevent my tonic clonics, and I do take a little above that.  However, I still get very close to having a generalised seizure about once every six weeks.  This means I will have a prolonged and extremely unpleasant focal/partial seizure (in one area of my brain, affecting one side of my body) which cuts off abruptly before spreading and becoming a Tonic Clonic.

I know from practice, if I took slightly more Tegretol, these wouldn’t occur.  But sadly, that higher dosage is also the same magical dosage where my side effects become unbearable. I’d be disoriented, lack mental clarity and suffer nausea. On that dose, I stop being me.  One, undeniably uncomfortable, night-time experience every six weeks just doesn’t seem worth losing myself to anti-epileptic zombiedom for.  It’s certainly not something I’d advise, but my neurologist is comfortable with the arrangement given my confidence and long history with the drug.

The other major trade off that came up was my choice to travel and live tens of thousands of miles from my family.  I won’t lie, some days it’s hard.  Did I wish my mum was there to make me dinner yesterday, after I spent most of the day having weird shivering automonic seizures? Yes – KFC was hardly a substitute!  Did I freak out when I went Status Epilepticus in the Australian outback, after stupidly missing a tablet? You bet! Is it shitty when I’m in hospital and my family aren’t there? Of course.

Is it all worth it? Most days.

065

The researcher suggested even thought I don’t have much control over my seizures, I actually don’t seem to view myself as having many barriers.  Truthfully, This illness takes so much from me.  I’ll live with the sleepless nights, the other health complications it brings.  I’ll put up with the associated costs.  I can negotiate the things that it prevents me from doing.  I will deal with it constantly interrupting my work plans.  But I refuse to let it have everything.  It won’t steal my identity.  It can’t have me.  And for me, travel, my work, my independence are all a huge part of that.

DSCN0400.JPG

And I don’t regret any of it.

It’s far from easy.  But as long as I can see a little bit of the real me somewhere beneath this illness, and I remember that sometimes the decisions I make are for her, I know I’ll be okay.

Epilepsy, we’ll do this, but whenever I can, I’ll make sure we do it my way.

Ria

x

Reality and Brain Surgery!

I’ve been holding off on posting for the last few days. Mostly because I’d wanted to offer you something uplifting.  I always seek to be enthusiastic here, or, at the very least, insightful.  I’m a fairly positive person and it’s important for me to capture that energy in the site.  Except, we all know that eternal optimism isn’t a realistic expectation. Every day isn’t like that, no matter who you are and especially when you are negotiating chronic illness.  This site is meant to be a space of authenticity, so here we go.

I spent some time alone over the holidays.  I typically love time to myself, and I even pulled back on my university commitments for a few days to rest.  This time, it wasn’t easy to be alone with my thoughts.  I realised there were recent occurrences that I’d dealt with by engrossing myself in work.  And maybe, just maybe, I hadn’t processed them fully.

Last month I met with my epileptologist and we talked about my latest run of tests, updated MRI and PET scans.  Some of you may be aware of how a Positron Emission Tomography works.  Very simply put, it is an imaging test which utilises a dye which contains radioactive tracers. This is injected into your body and allowed to enter your bloodstream where it interacts with existing particles in the body.  As you are scanned, in a manner similar to a CT scan, the tracer will illuminate areas of irregular metabolism or chemistry in the brain.

image

(My brain!)

My recent PET scan showed an area of hypermetabolism in my left frontal lobe. This suggests the presence of a lesion, specifically in the motor area which controls my right hand and leg.  Consistent with my symptoms, and indicative of my epileptologist’s view that I have Focal Cortical Dysplasia – an abnormality affecting neuron distribution in an area of the brain.  There are various types of FCD, but it frequently causes seizures which are medication resistant.

This discovery confirmed much of what the epileptologist and I had discussed in our previous meeting.  The options I was offered were new, though.  My MRI remained ‘normal’ – the technology is likely not yet advanced enough to allow a glimpse at the lesion.  Without a clear image, it is difficult for the consultants to see how the Dysplasia is dispersed for possible surgery.  So, in the absence of MRI confirmation, I could choose to undergo intercranial EEG testing – with electrodes directly placed on my brain and medications reduced.  This allows doctors to map seizures as they happen, locating them more precisely in preparation for surgery.

Should this all go to plan, surgery would have a likely success rate of 40-50%.  But, because of the lesion’s location, it may very well cause weakness on the right side of my body.  A huge sacrifice to make, when seizure freedom isn’t guaranteed.  I’ve decided against the exploration and the surgery. I’m not sure I’d want it, even without the risk, but it’s certainly confirmed my position.

As confident as I am with the decision, it has come with a strange sense of grief.  The reality is, that with a definite lesion and no surgery, I now know my seizures won’t suddenly stop.  I can’t live in that idiopathic fantasy world, reading stories about people who experience sudden, unexplained recovery. It’s epilepsy and me, and we’re living this life together.

So that’s my reality today.  But I’ll tell myself that tomorrow, or next month or next year it might not be.  All I have is hope. Hope for a miracle cure. Hope for an innovative drug. Hope that surgery becomes more advanced.  Hope that maybe, just maybe, this won’t be my reality forever and it won’t be yours either.

Ria

x