I’ve written previously about an episode of my life where anger, frustration and immense loathing of my diagnosis caused me to make a terrible (and dangerous) decision. Without medical advice, I stopped taking my medication and lost almost a year of my life, it’s still a blank spot in my memory. Unfortunately, my family remember it all, forced without warning to rearrange their lives. It was my troop who became my carers, all with no indication when (or even if) their shifts would ever end.
When my ‘light’ came back on, I left, pretty much immediately, for Australia on a 1-year work visa and stayed for what became 12 years. I barely spoke to my family in that time and when I did, it would often end in shouting. I’d fight with the people who’d supported me through a time most families never experience, let alone cope with. I was unbelievably angry.
I’d been determined to see the world, adamant I was going to have experiences like any other girl in her 20s, it was inevitable I went into denial when it came to epilepsy. It shouldn’t have been (such) a surprise when I got back to the UK in 2012, that depression kicked in so fast. Coming back to where it had begun, had forced me to confront the realities of the condition I’d ignored. My seizures didn’t get any worse necessarily, it just felt like it because I was so utterly, completely, desperately low.
I’d found a full-time role I enjoyed; I was lucky, and I knew it. When I started it was a small firm of insurance brokers. I handled everything administration related. When I’m on form, and not plagued by never-ending, neurological nightmares, I revel in attention-to-detail-type-flotsam. I was good at this job, and I liked being good at it. I loved the lifestyle. For nearly two years I coasted along: Friday night drinks, I was there; Saturday night parties, yep, you betcha, good-time-Goldilocks was front and centre. I convinced myself and (I assumed) everyone else, everything was fine and dandy.
Too Busy Trying to Be Something I Wasn’t … Anymore?
I didn’t try to get help for my health, though I knew it was declining; it was 2-years before I contacted a neurologist. It didn’t matter I was having more seizures than ever, and the seizures had changed. I was too busy trying to be you-beaut-Aussie-Goldilocks in the UK, and my tan was fading. Fast.
Then, out of nowhere, I had a strange seizure, I had a really f*cking weird seizure, in the office. I’d frightened my colleagues enough to call Big Sis’. Whilst post-ictal I’d been crying uncontrollably and mumbling some dark, dark things. This is common in focal impaired awareness seizures and my co-workers, concerned for wellbeing, had needed to make sure I was okay.
Of course, these dark thoughts were there, I was depressed. It felt like I was losing sight of what a rational, sensible, straightforward life in the sun looked like. What seems ridiculous now is that awesome life in the sun was, in reality, a complete and utter fallacy. I was trying to function like a person who doesn’t have epilepsy; I’d achieved this in Aus. and (up to this point) since my return. Yet, without wishing to state the obvious, this will never be the case. I have epilepsy.
It Felt Like I Was Going Mad
This event prompted a new MRI, the results of which the doc’ described as ‘non-epileptogenic and therefore reassuring’. I ‘got’ what he meant by this. I understood that the doc’ believed this would make me feel better. Yet, it didn’t, it doesn’t and deep down it never will. Don’t misunderstand me. I don’t want them to find something in, on or near an important (or even a relatively unimportant) part of my brain. That’s not what’s going on. It would be awesome to have, and back then I desperately needed to have, some idea why I have epilepsy.
Every time they look for something and don’t find anything, it feels like I’m going mad, like perhaps on a subconscious level I’m putting it on? Then grown-up-sensible-common-sense-Goldilocks kicks in. You can’t fake the sort of sh*t that was happening, does happen to me; to people with epilepsy.
In a major refusal to accept the situation, I made (what I thought was) a compromise and cut my hours from 40 down to 24 each week. It became obvious pretty quickly I was going to need some help, financially. That was hard. Without ever having been on the benefits merry-go-round, I knew I wasn’t going to like it. I knew life was not about to get easier. That’s what’s messed up about the UK’s social security system; I’d taken a huge step and asked for help, yet it meant I was kicking a hornet’s nest. In many ways I’d sent myself hurtling towards more sh*t.
Nothing Else Could Happen … Right?
For a little while, I did marginally better than okay. But it was still only okay. Life plodded on, nothing else could happen, right? In 2016, I had my second sickness absence (the first being at the end of 2014). This one lasted 8 weeks, 2 weeks longer than in 2014. I must give major kudos to the company I was working for; they took care of me. It wasn’t until the last 2 weeks of this absence that they placed me onto SSP, where previously I’d been paid my full wage.
At the end of May 2016, I started feeling dreadful and contacted my neurologist. I explained to him I was stupid-dizzy, lethargic, feeling sick and my head felt like it was about to explode. The neuro’ requested an urgent blood test; 24-hours later the results came back showing my sodium levels at 126mEq/L (milliequivalents per litre). Sodium is one of the body’s electrolytes (what plants crave). They help conduct electrical impulses in the body – getting a tad more epilepsy relevant now, innit? The level of sodium in an ‘average’ person should sit between 135-145 mEq/L.
At this point, I was on 3 different meds for my seizures, including Oxcarbazepine, a member of the Carbamazepine family (kinda sounds like the AED Mafia, there’s a TV show, begging to be written). This continued for a week. I should have been focusing on getting better, I should have tried to relax. All I was thinking was ‘my best friend is getting married and I want to be there, I have to be there’.
That’s What Sucks About This Condition!
My sodium dropped 2 more points. To eliminate the cause, my neuro’ further reduced my dose of Oxcarbazepine. It’s a dangerous game to play, reducing the anti-epileptic medications of a person with epilepsy; it’s epilepsy Russian roulette. By June 8, I was having trouble breathing, and so lethargic I’d barely moved in days.
BFF’s wedding was on June 10, in Italy. I was part of his wedding party, and I’d managed to save enough cash (on benefits!) to get there. We’ve been friends since we were 11, we even travelled to Australia together! He was having the wedding of his dreams, marrying the man of his dreams, and epilepsy was ruining it. I’d learned a flash dance, bought an awesome dress, which matched their preferred colour-scheme, I’d been looking forward to seeing him get married.
Just once, I wanted to be (or even pretend I was) like everyone else. I wanted to play the game where people do stuff, like pack a suitcase, get on a plane, go to their mate’s wedding, and there’s no dramas. I know it’s not about me but … come on!
Eventually, my neuro’ admitted me to a neurology ward, where I stayed for 10 days. In a truly perverse way, this made me feel better. Only genuinely sick people go to hospital, right? It somehow made it easier to justify my non-appearance at the wedding, and at work. That’s what sucks about this condition: 95% of the time I look fine, I appear right-as-rain, rosy-cheeked and, sometimes I even get to raring-to-go. All my drama, downfall and ‘sorry-I’m-having-one-of-those-days-I-have-to-cancel’ hides itself in that last 5%.
Hypona … What Now?
By restricting my fluids, and with daily testing of my blood and plasma, the ‘BigBrains’ were able to re-balance my sodium levels. The docs sedated me with Clobazam, took me off Oxcarbazepine and placed me on Eslicarbazepine. A drug which is, incidentally, a member of the Carbamazepine family. I wasn’t back at square one, just pretty close to it.
I cut my hours again from 24-18, now I was only working 3 days a week on Monday, Wednesday and Friday. It worked well, I had the weekend back, but only because I spent Tuesday and Thursday asleep. That’s not a life.
In February 2017, I felt the, now familiar, symptoms which signalled my sodium was low. Vicious headache? Check! Intense nausea? Check! Crazy dizziness? Check! A blood test showed it was sitting at 128mEq/L, this was low but not really anything to worry about. (Yet.)
What’s hard though is functioning, when you’re already knackered because of seizures, while feeling the effects of low sodium (or hyponatremia, to be more scientific). This wasn’t my first low-sodium rodeo. I knew 128mEq/L was nothing to worry about. The doctor was happy to wait 2 weeks for a follow-up blood test, and so was I.
Recognising my distress went beyond the levels of sodium in my blood however, the doc’ signed me off (again) from work, citing refractory epilepsy, seizure related stress and fatigue. My employers, having had previous experience of my absences, were all clued up. After the obligatory 4-day wait, they placed me straight on to SSP and I haven’t been back to the office.
‘Hey Goldilocks … Chillax Dude!’
This was a major blow, I felt like the doc’ was telling me I was broken. As if he was saying, ‘you may as well give up now, Goldilocks. You’re untreatable, you simply don’t stand a chance’. Now, I see he was really saying, ‘you need a break Goldilocks. The reason you’re depressed and having all these seizures is because you’re working and exhausted, chillax dude!’ (Okay, perhaps not ‘chillax dude, but you get my point?)
In the last 3 or so years, I haven’t just turned a corner, I’ve ripped down the wall, crossed the street, crossed back and shouted at the road until it went in the direction I wanted it to go. That’s progress. Before that I was running, walking, then crawling on the hamster wheel that was my life, until I fell off.
For the first time since I returned from Australia, I feel like I have prospects. The decisions I’ve made over the past few years have led to me being where I am now. There have been some hiccups along the way, of course, this is life we’re talking about, not a RomCom. There’s been the stress with leaving employment, and the dissociative seizures and anxiety that caused. I’ve moved, in fact I’ve left mainland Britain to live on the Isle of Wight. A stressful feat for most people, throw a chronic illness in the mix and you’re dealing with additional nightmares.
I’m surrounded by an amazing community, I’m accepted for who I am, whatever happens. Whether that means Epilepsy Goldilocks makes an impromptu appearance in the supermarket and baked beans go flying, or I’m out and about while rocking the lesser-spotted-double-panda. These guys don’t stare, they don’t judge, they don’t pity me either (‘cause that’s just as bad). I get a hug; a cup of tea and I’m told to get the f*ck up.
Life’s Still Not a RomCom … But it’s Less of a Drama!
I needed to stop working, I needed to leave where I was living and be in a small town, on the Island, with a slower pace of life. If I hadn’t been able to replace my salary from my full-time job with benefits, it simply wouldn’t have been possible; my life would be extremely different. I still have epilepsy (obvs) with all the shenanigans it brings but now, by prioritising my health, I’m doing better, physically and mentally.
Because having epilepsy is like being Goldilocks: you can’t have too much, you can’t have too little; everything has to be just right.
Copyright © Jo Mackenzie 2020
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