Tag Archives: epilepsy

Milestones and stumbling blocks

I’ve finished! I can now call myself a Social Worker, with the piece of paper to prove it, the transcript that shows four years worth of courses and late-night essays and months of placements. Done!

Sooo….what now? Who am I, if I’m not a student anymore? So much of my identity was (is) wrapped up in being a high-achieving, HD-scoring, super-involved student. I will graduate with 1st class honours and a string of extra credits, but no job. What?! That wasn’t the plan! I’ve been looking for jobs since September, because ‘obviously’, in my high achiever, go go go mind, I wasn’t going to take a break after study. I was going to finish, graduate and get right onto changing the world.

WELL. That hasn’t happened.  My perfect transcript doesn’t really count for much, in fact, many community sector jobs list qualifications as ‘desirible’ rather than ‘essential’. Which is depressing given I have been at uni for 4 years and have a $20k debt. Then there’s the driving thing. Apparently, being a social worker is not about people skills, or advocacy, or supporting people through the shitty times in life: it’s driving clients from A to B. Again, a four year degree to…drive people to Centrelink? About 90% of ads list a driver’s licence as essential, and regardless of whether that’s true or not, I don’t drive yet. Thanks, epilepsy. I’ve had two job offers retracted because, despite clearly stating this fact, people don’t register it. It’s like a foreign concept, like not driving is equivalent to being unqualified.  ‘Oh…we just assumed you could drive…oh yes I see it’s written here…well, sorry. Come back when you have a licence’. Part of me wants to scream, “DISCRIMINATION!’ in their faces, but the reality is that I’m a new graduate and they know I’m not going to make waves about it.

It is so FRUSTRATING. I’m so ready for this, I’ve worked so hard, I want to be out there using my skills and just…nothing. Well meaning people say things like, ‘your time will come’ or ‘just think of these stumbling blocks as stepping stones’, and I want to scream. I’ve never been in this situation before. Everything I’ve set my mind to, I’ve worked hard for and gotten it- jobs, scholarships, everything. It’s really hard not to spiral into self loathing- what’s wrong with me? Why are other people getting jobs and not me? I’m a failure.

I may well be unemployed for the next few months, until I- hopefully, all things going to plan (huh)- get my licence in March. I don’t know how I’m going to cope with that. I’m a lot more resilient that I was just a year or so ago, but it still hurts like hell, and I still feel useless and out of control. I’ll keep churning out applications and hopefully get one of the rare-as-hen’s-teeth jobs that don’t require driving. I hate having to rely on hope and the discretion of others instead of skill and experience, it makes me feel completely shit and more disempowered than ever. But I don’t have a choice.

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Saved By The Evening Sky

 

 

 Saved by the evening sky. My favourite shade of blue, dusk sweeping west and blending with orange to wrap the city into night.

Nausea won me over this morning. It’s something I have everyday,a  side effect of medications, but normally not too bad. I take my epilepsy medications early to try and give it time to settle down before starting the day, but today I was still unable to function at 9am, wave after wave of ‘oh-god-I’m-going-to-vomit-whoops-no-I’m-not’ passing through my tummy. The occasional sharp stabbing pain that I associate with (now long past) laxative abuse. Trying to get vertical but too dizzy to stand. Resigned to bed and a short email to placement, sorry it’s not going to happen today, sorry, sorry again. Guilt, shame, fuck you body I need to be able to DO things, how I hate letting people down, not being able to follow through on my commitments. Close eyes, give in, fade out.

Being able to get out of bed the second I wake up is a very important part of my Don’t Kill Yourself Today plan. If I don’t, the Negative Thoughts take over and everything goes to shit so quickly that I hardly even notice until my real self is buried underneath layers of blankets and doom. So today was kind of a write-off, in that most of it was nauseated hell and the afternoon was just a cycle of thoughts about it being a waste of a day and ergo, me being a waste of space. Delightful inner monologues are (not so) delightful.

I had to get out of the house and out of my head. This is the real hard work for me- not the contemplating, not the therapy, but the action. Standing up to my head, rustling by the fragmented bits of ‘real me’ and giving depressive thoughts a big FUCK YOU by choosing to engage with the broader world.  I got lucky this evening because it was so beautiful, the clear sky and the moon and air cold enough to see my breath as it exhaled, reminding me I was very much alive.  I am alive and here in the world and that’s a good thing. Tomorrow I will get up again, go about my day, look to the sky, notice the colours around me, engage with people, keep doing the hard work…and then probably come here and write about it!

 

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Epilepsy and Stuffs

Just a few more thoughts on epilepsy and chronic illness and stuffs…I’ve written about this before, here. But I have had some new thoughts since then! So read on.

Seizure free? Whoa!

I haven’t had a seizure for over eight weeks now. EIGHT WEEKS. Why yes, I am rather excited, can you tell? As far as I remember, I haven’t gone that long without seizures since I was eleven or twelve. I am on a new drug and, for the first time in a zillion (ok, ten) years, this drug actually works. I can’t even list all the drugs I have tried for the past decade to try and get this thing under control. I thought there were no more drugs I could take. It really does feel magical. Like somebody has opened up my head, reached in, and rewired it so that the knots and glitches causing seizures have been straightened out. Weird visual, I know, but just go with it.

But wait…

OK, I must confess. There is one slightly annoying thing about the new med. It’s made my periods dry up. Which led to the following conversation with my GP.

Me: I haven’t had a period for 8.5 weeks.

Her: Could you be pregnant?

Me: Absolutley not.

Her: Well, what contraceptive methods are you using?

Me: Lesbianism.

Her: (silence)

I have been seeing this doc for quite some time. I’m out to her, as I am to the majority of people in my life. I think it must just be an automatic response. Looks like a woman? Looks older than puberty? Not menstruating? Must be straight, and must be UP THE DUFF! Which is kinda sad and indicative of our heteronormative world. But that’s another post. Also, I don’t have a girlfriend and I haven’t had sex of any kind for many moons. So I’m actually a celibate lesbian, even more pregnant-proof! But again, that’s another post.

I don’t mind that Aunty Flow hasn’t been visiting lately. It’s quite convenient really. But a little part of me- particularly Future Me- is worried that it’s possibly impacting on my health and my abilities to do baby-making down the track. Hmmm. Actually I have a whole swag of anxieties around epilepsy and being pregnant/ having kids. Anti-epileptic drugs can harm the baby. Going off anti-epileptics during pregnancy can cause seizures which can harm the baby. Having a seizure during labour…oh, you get the picture. It’s not something that requires attention right now, and so I shall file it away for future worrying. *click* That was the filing cabinet in my brain sliding shut.

Travelling with epilepsy

Something that does require attention right now is preparing to fly on a jet plane to Nepal, which I will be doing in August. I will also be walking up and down mountains. In remote areas. Like, places where epilepsy is still considered to be an expression of witchcraft. Eeeek.

The first obstacle to making this adventure happen was finding a travel insurance company that would provide me with cover for both a) epilepsy and b) remote area evacuation. It was not an easy task to find (and pay for) a product I hope I never have to actually use. But I did it and wept a little as I deposited almost a fortnight’s cash over to this large, reputable insurance company. They better be damn helpful if I do need to engage with them.

Next step is getting my doctor’s letter listing all the meds on it translated into Thai (for the stopover) and Nepali. I’m having nightmares of being chucked in a jail somewhere because a customs official mistakes my medications for something more illicit and labels me as a drug trafficker. Yay! More stress!

And finally, an epic organisation/ memory fail…

I was supposed to pick up my medications from the chemist today, because I ran out of the vital magic drug and have almost run out of some other meds. But I forgot, because I also had a assignment due and clearly my brain is not up for holding mutiple things in my memory right now. So, it’s 9pm and I suddenly have an ‘OH FUCK’ moment, where the important thing you were supposed to remember comes flashing into your consciousness.

It’s OK, I reassure myself, the pharmacy is open until 9.30pm. Haven’t done much exercise today, so run like the wind, bullseye! I get there at 9.1opm, and it turns out they actually shut at 9pm on Fridays. I bang on the door. ‘I’m not robbing you!’ I shout. ‘I’m not a junkie! I just really need my meds!’. They take pity on me and open up. I almost cry in gratitude. They look at me like I’m somewhat deranged. Well, aint that the truth.

How To Be A Responsible Epileptic, Rule #47: Always secure the medication that you are heavily dependent on BEFORE you completely run out.

And a fun fact to finish with: I am dependent on four medications to keep me functional/ alive. The full cost of them is $549.95 per month. I pay $23.20 towards that.  I don’t thank the government often but I will on this occasion. Thank you, Australian government, for the Pharmaceutical Benefits Scheme and Health Care Card concessions. Many of your other policies are terrible but these ones are amazing. Don’t you ever try to take them away or I kill you. Love, Me.

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Chronic Illness and Body Image

It’s a topic I’ve been wanting to write about for ages: the impact of having a long term medical condition (in my case, epilepsy) on my body image and self-perseption. Well, now I’ve got me a blog, and I’ve got the time to write, so here goes!

At Diagnosis

I was diagnosed with epilepsy at age nine, after a major seizure while I was playing the piano. One minute, scales. The next minute, bang, Catherine’s on the floor! The onset and diagnosis felt very sudden at the time- I went from being a pretty regular kid who had their fair share of bumps and bruises, to having to undergo all sorts of tests and assessments, and try a seemingly never-ending combination of drugs in the hope of ‘controlling’ the seizures.

I remember a couple of strong feelings from this time. The first was a sense of shame and embarrassment that my body was ‘playing up’: epilepsy is not generally a genetic condition, and nobody else in my family has it. Prior to diagnosis, I was a very ‘good girl’, independent and responsible. My parents- who had three children (including me) and a fairly unstable relationship- suddenly had to worry about me, and attend to quite serious medical needs for me. I remember constantly feeling like I was making my parents more stressed and unhappy than they already were, and feeling very guilty about this.

The other thing about epilepsy is that- like many neurological conditions-  it’s a bit of a guessing game to treat. The brain is such a complex, individual bundle that you can try drug after drug, and none of them will work. Or they might work for a while, then stop. Or (commonly) the drug might be fairly effective, but any benefit is overridden by horrible side effects. I felt like the epilepsy had taken away any control I had over my body, and I was at the mercy of the condition (and of doctors and their many drugs/ side effects).

I can look back now, over ten years on, and see all the warning signs: Shame. Embarrassment. Guilt. Lack of control. Mistrust of my body. And smaller things, like having my weight mentioned more than ever before (to calculate drug doses, to see if I was growing ‘normally’, on every form for every new doctor). My autonomy over my body was frequently taken away and given to others: doctors who rarely spoke to me but talked over my head to my parents instead, nurses poking and prodding, machines taking readings, drugs having all sorts of impacts and seizures which would not be tamed.

I think the hardest thing about being a child with a chronic illness is that nobody ever took the time to explain what was going on; to clarify that this was a medical condition with a random cause, not a personal slight on my character or something that I could control by being ‘a good girl’. I was treated at a specialist children’s hospital but I never once remember being spoken to directly, or asked if I understood what was happening. Nor was there any effort made to see how the diagnosis and illness was impacting on other areas of my life, like self-esteem or coping at school.

After the epilepsy diagnosis at nine, I was beginning to hoard and binge on food by ten, and had started vomiting and laxative abuse by eleven, which would eventually progress into full-blown bulimia. Is this trajectory purely a result of the epilepsy? Of course not, there were plenty of other contributing factors. But, I do believe that those feelings of my body being ‘wrong’ and ‘out of control’ that arose with the diagnosis- alongside no effort by professionals or family to ever challenge these thoughts- had a big impact on what has happened since.

What it’s like now

I still struggle with the reality of having a body that is not under my control; and that in fact is frequently totally uncontrollable. Seizures are random events that can- and do- happen at the most annoying times. Important meetings, a gig I really wanted to go to, a close friend’s birthday- epilepsy doesn’t know or care about these things. Epilepsy doesn’t care about making you look like a drunken fool on the train, or causing you to fall asleep in public and expose yourself to danger.

I feel a great deal of shame, and expend a lot of energy worrying about what people think of me. Do they think I’m lazy or rude or unreliable, when I don’t turn up to events because my body’s just not up to it? Do employers look at me as a liability because I can’t drive? Do I really deserve support from the government, in the form of a disability support payment? This extra layer of shame/guilt/worry sits on top of an already rather full ‘internal voicemail’ that picks apart and criticises how I look/ walk/ talk/ act as a fat woman.

I also have the ongoing battle of trying to educate neurologists and other epilepsy specialists about my co-exsisting conditions of depression, PTSD and disordered eating. All anti-epileptic drugs have a depressive effect, and many cause increased suicidal tendencies. Some take a few hours to absorb, or only work if taken with food, which becomes problematic if I’m fasting or purging. Many a neurologist has looked at me with disdain, as if to say, ‘Stop your terrible behaviours at once, naughty little girl!’. Well, it’s not as simple as that, buddy. And the drugs you’re asking me to ‘try and see’ may not be helping, either.

Epilepsy can be isolating and frightening- despite it being a rather common condition statistically, I know few other epileptics, and many people say I’m the first they have met. Having to ‘out’ myself as epileptic, to explain the first aid procedures, to combat the myths and stereotypes- NEVER stick a spoon into a fitting person’s mouth!- can be exhausting. When I’ve already got an internal voice telling me what a fat stupid cow I am, having to stand up in front of a whole room of people and expose another vulnerability can be…challenging! Or downright painful, depending on the day.

At the same time, I value the relatively high level of freedom and independence I have, in spite of the condition. I live independently, I work and support myself, I go out and have fun. I get dizzy and fall down and then get right back up again. I have a voice that I can use to advocate for myself, for others and for the epilepsy community. Sometimes I have to work hard to remind myself of these positives, but they are there and I am grateful.

Ending thoughts

I feel like this post has been a massive rant, and yet there’s a lot more I want to say on this topic. Maybe it’s something to revisit during this year. However I’m glad to have made a start at mapping out how these two aspects of my life- the chronic condition I live with, and the way I perceive myself and my place in the world- intersect and impact on each other.

The image above is from the wonderful tumblr ‘Chronic Illness Cat’ and gave me a giggle when I searched ‘chronic illness + body image’ on Google. 

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