Epilepsy: my Super Power?

What do you do with an Epileptic lettuce?
Make a seizure salad.

So you’re now either doubled up on the floor, hysterically laughing or getting highly offended and rapidly moving the cursor straight to the comments section.
Well I have Epilepsy so its only fair that I get to tell those jokes with no repercussions. There’ve got to be some perks.
If you’re laughing… well why wouldn’t you be? I practically exhaled my coffee when I saw it on a meme. If its the latter, lighten up. You know you want to have a little chuckle at the cheesy joke.

I could write a nice long paragraph defining Epilepsy; the indications, which regions of the brain can be affected, different seizure types, medications, short and long term effects. But I don’t want to bore you and you’ve got Dr Google for that. I don’t want to sound like one of those ‘no one understands unless they have it themselves’ people but actually… no one understands unless they have it themselves. No amount of description ever comes close to establishing what this weird condition feels like. I’m sure a lot of people would agree with that about many chronic or even acute illnesses.

At the age of 13 I was diagnosed with temporal-lobe epilepsy. To be honest I’ve never really read up on it much. I prefer to avoid the technical and gory details, especially with my nurse brain.
The two types of seizures that I experience are complex partial seizures and tonic-clonic seizures. The best way I can think of to describe the partial seizures is having a sudden, wave of haze flowing over my brain, from the front to the back. I stay awake but lose what I’m doing, like someone’s pressing pause. It feels like my eyeballs are shuddering and the world becomes hazy, just for a couple of seconds.
The tonic-clonic seizures usually follow multiple episodes of what I’ll call ‘waves’, I have no idea what they feel like as I’m out for the count. But I don’t half feel like I’ve been hit by a bus when I come round. Not that I have ever been hit by a bus.

She’s electric

I started experiencing the waves when I was about 11. Usually when I had a sudden change of thought or was under pressure. I obviously wasn’t taking any medications so they were quite rough waves. I remember catching a netball during P.E and just freezing, then stumbling around slightly. When I came back to the world, I heard nothing but an angry sounding blast from the teachers whistle (I’d had the audacity to foul, you see) and my team mates groaning and shouting at me.
There was also the time my year 8 English teacher asked everyone in the class to state our recent spelling test scores aloud in turn. When it came to my turn, I opened my mouth and as the wave crashed, nothing came out. Nothing, followed by a shaky “erm”. The most annoying part of this situation was that my brain had robbed me of the opportunity to stand up, perhaps on my chair, and declare to the class (or even school) that I had actually scored 100% in my spelling test. This would then, of course, have been followed by a roaring round of applause and perhaps a trophy of some sort. Maybe even the class turning into a flash mob (too much?). But no, poor child me had to sit confused wondering why everyone was laughing, not clapping.

So then I experienced my first tonic-clonic seizure or ‘full blown fit’ (lets call them FBFs being as we’re keeping it casual) on Christmas day, just before my 13th birthday. I always used to get too excited Christmas day but I would usually just have a bog-standard excitement vomit. Not this year. One minute I was opening presents and the next I was in a fast moving ambulance with my dad sitting by me, looking very lost. I remember pulling off the heart monitor tabs and oxygen mask (like a badass) before being wheeled into A+E fashioning my new overly-massive novelty dog slippers. I was seen by a pleasant young doctor, who said I could go home and have a CT scan as an outpatient (a questionable medical plan in my opinion). Back home and carry on with Christmas. No big deal. I cant even remember how I felt when they explained what had happened. I probably just wanted to get those dog slippers off the premises.
I didn’t think it was all that bad, until my Mom gave me the family’s version years later…
I was sat excitedly on the settee, opening presents with everyone (in turn of course) and I did, what appeared to be a gambol off the settee and into my Mom’s legs. She asked me what I was doing (which was probably quite a tame reaction considering I’d apparently just hurled myself at her) and she turned me over. My family watched me as my whole body contracted, stiffened and then released into convulsions. My arms and legs flexed and tight as though I was trying to push off an elastic band from around me. My face screwed up as if in horrendous pain. My lips gradually turning blue as I simply stopped breathing. Then came a gasp and a pool of blood from inside my mouth. Nobody realised at this point that I had been biting my tongue. My Mom later admitted that she thought I was dying. Richard, my older brother calmly called an ambulance. Dad and Mom stayed by my side and my younger brother, Andrew (who would have been 9) ran upstairs in a panic. He admitted that he started praying. He declared that ‘He’ could take all of his toys away if he didn’t let his sister die. Now I am seriously not joking here, the console that Andrew had bought for him was faulty and his new board game didn’t have a board. That factor in the whole thing is quite a nice thought as an adult. Maybe I took my gasp after he had finished his prayer… Even so, that’s very irritating when you’ve just had a fit and want to cheer yourself up with some games.
So anyway, I eventually went into a deep sleep, a state called post-ictal (lets call it ‘fit snooze’) and came round in the ambulance, very confused and later unable to eat my Christmas dinner due to a chewed up tongue.
Investigations and referrals were prompt, diagnosis was quick and medications were commenced. Aren’t we lucky to have that fantastic NHS! More importantly, we successfully got the faulty toys replaced.

Poor little thing eh. Not really, I was fine. I sprang back up whenever I had FBFs at a young age and it was almost like a novelty at school. “Guess what I’ve got?!”
I got a whole morning off school one day thanks to one of these FBFs. My tablets were orange flavour, and the Doctors thought I would grow out of it anyway so it was all good. I’d tell my friends stories consisting of imaginary versions of how my fits looked. It was something I had that no one else did. A crazy, electric brain. That was my super power…

An electrocuted adult

As we all know, experiences in childhood often make their mark and follow us into adulthood. Now being as child-me perceived her bizarre brain as something of a novelty, it could surely only continue that way. If only general adult life was as simple as childhood.
The moment I started viewing Epilepsy as a negative aspect of my life was the moment that it became a barrier to something I wanted. I got older, my body changed, my medications changed (they don’t like to give certain medications to young people with wombs you see, in case they breed and poison the offspring) and my lifestyle obviously changed. The seizures intermittently came and went (and still do). My saviour was that I only had FBFs in my sleep or shortly after waking up. So I never dropped in the street, at work or when out with friends. I am very thankful for that!
However, I would have them at very inconvenient times, such as in the shower when the door was locked. My dad had to bash the door through the heavy lock and scoop me out of the shower. What a sight that must have been for him, to see his daughter in that state (with no clothes on, urgh). But I count myself lucky that I opted for a shower rather than a bath.
I had another one straight after going for a morning wee. I stood up to pull my bottoms up and down I went, like a sack of sh*t, face planting the bathroom floor. My mom came in to find me fitting away, bum in the air with my pants round my ankles, next to an unflushed toilet. I can’t help but chuckle picturing that scene. I woke up with two black eyes, a nosebleed, and carpet burns on my face. Sexy.
Whereas I used to just spring up from these FBFs and carry on my day, I would feel weak and heavy. My legs feeling like lead and everything around me slowing down. Slowing down and becoming harder to process. I couldn’t eat solid food for days afterwards, having bitten my tongue so hard. I once had two FBFs in a row when I lived away from home. Andrew came round with ice cream, which of course I had absolutely no choice but to eat every last scrap of (for medicinal purposes of course). Mom offered to bring me soup. Nah you’re alright Mom, lets stick with the ice cream shall we.

I remember once waking up to my Mom’s concerned face in full view and hearing her soft, motherly voice saying “you’ve had a fit sweetie”. I can’t even explain why I felt this way but I wanted so badly to pretend it had never happened. As in, lets never speak of this again everyone.
I once woke up after a nights drinking in Munich to have my boyfriend tell me I’d had a fit. Oh God, he had witnessed it. I thought it definitely would put him off me. Its not a pretty sight, apparently. I’m pretty sure the first thing I said to him was “don’t tell anyone”. Of course, that was my frazzled brain reacting in an irrational panic and willing for it to have not happened. Willing him to turn back the clock. But even though he’d seen me looking all distorted and weird, it didn’t seem to put him off.

I had to stop driving, which I found very upsetting. It felt like a chunk of my freedom had been ripped away from me.
I qualified for the Nursing degree at the University I wanted but they had to defer my entry for a year, as I had to be seizure free for a specific amount of time (equal opportunities at its finest there). I wanted my degree so I settled for my second choice. It was affecting my future career! It then affected jobs I could apply for, as I couldn’t work nights.
In my mid twenties, I had a boyfriend who struggled to cope after a period of time when I was particularly unwell. My seizures were not controlled and my symptoms and treatment were very intense. He broke up with me soon after. I was convinced that my epilepsy caused me to lose someone I loved.
I have to take tablets twice a day for life. I kept forgetting to take them so I bought pill boxes to put them in. Wasn’t it only old people that had those?
The tablets had awful side effects. Everything I thought about was slow and blurry. My memory was so poor. I was terrified of it affecting my job as a nurse. I was treating and caring for people, how could I do it effectively and even safely when I’m like this?! I had episodes of pins and needles in my hands and feet so severe, that I would cry with the pain. I had muscle spasms in my face, leaving me looking like a brewing psychopath.
I am constantly warned about the risks of being pregnant. The risks to me and to the baby. Every time I would see my neurologist or specialist nurse, I would be asked whether I wanted children yet (and I mean every time). I must make sure I plan my pregnancy, attend an epilepsy and pregnancy clinic, take high dose vitamins and be scanned regularly. It made having children an even more terrifying thought. Plus why would I want to risk having a child for them to inherit it?!
I’ve had periods of time when my symptoms have flared. Plans ruined, days lying in bed and even hospital admissions. But worse that those things, being unable to understand why it has happened. What triggered it?! I took my pills, everything else was the same. There’s no reason for it.
I signed up for counselling because I hated this part of me. I hated this disease and everything it did to me. Everything it made me lose or never achieve. Whenever I spoke about anything in my counselling, it would always link back to my Epilepsy. My dreadful, incurable illness.
Over time, my Epilepsy stopped being a super power. It became a curse. How could something that used to make me feel so unique now constantly just put a block on all the good things in life?…
Or was that just my pessimistic, adult mind’s perception?

Of course it was!

My FBF effects were worse but they still went away after a short time.
I got my degree, I just had to take a different route.
Yes my boyfriend and I broke up and yes he struggled to get his head round it all but that wasn’t the only contributing factor to our relationship ending. It’s not fair to blame him for that. Plus no other boyfriends have batted an eyelid.
The medication had side effects but so what! They were keeping me alive. They were improving my quality of life. And by the way, no I wouldn’t be alive without them. My epilepsy is apparently ‘severe’ and without the pills I’d have eventually full blown fitted to full blown death. Or just never woke up one day. Yes there are risks during pregnancy but who doesn’t have risks during pregnancy? On a side note, you may have gathered that I currently have no burning desire to reproduce. But that may very well change and if it does, then I’ll take the risks.
Finally, as my specialist nurse once told me, sometimes it flares up just because it’s unpredictable. As you may have figured out by now, I don’t deal well with random occurrences that have no (apparent) rationale. In hindsight, I have no doubt that stressing about the what’s and whys, in times of flare ups, ironically exacerbated the whole situation.
I wasn’t the only person in the world with this condition and others had it far worse than me and dealt with it well. Plus we should be grateful every day that we are on this earth full stop!

My Epilepsy wasn’t holding me back from anything. The way I was perceiving it and dealing with it was.

Together in Electric Dreams

Typing ‘famous people with epilepsy’ into Google is a right treat when you’re ‘an epileptic’. Perhaps not as much fun as reading about Epilepsy in the olden days. If I’d have been alive before the 1970’s, I would have been forbidden to get married (not that that’s much different to now) and wouldn’t have been permitted into restaurants or the cinema. No Nandos, pick’n’ mix and a scary flick for me. If I existed in the 1900s, I’d have simply been admitted to an insane asylum and labelled as having a ‘neurotic disorder’. Harsh. In ancient times, I’d have been lying down having a hole knocked into my skull to release the evil spirits. Who seriously thought that was a good idea?

So then, famous people with Epilepsy.
We have some great musicians and actors such as Elton John, Neil Young, Prince, Lil’ Wayne, Danny Glover, Hugo Weaving, Rik Mayall and Jimmy Read (he actually died from his seizures).
There are authors such as Agatha Christie, Charles Dickens and Lewis Carroll, who claims his epilepsy inspired several of the effects that Alice (in her Wonderland) felt.
Artists and composers such as Tchaikovsky, Michelangelo and Vincent Van Gogh (it has been suggested that the illness is the reason he went mad and lopped his ear off).
Athletes and sports people such as Florence Griffith-Joyner (who also sadly lost her life as a result of the condition), Dai Greene and Chanda Gun.
Finally inspirational figures such as Alexander the Great, Theodore Roosevelt, Napoleon Bonaparte, Socrates and Julius Caesar (is it completely inappropriate to crack the seizure salad joke again at this point?).

So what’s your point Liz? You think you’re special just because you share a disease with the bloke from Lethal Weapon?
Well no obviously not, but whereas I was moaning and groaning about not being able to drive for a year, consider what they were doing. Writing classic novels, making beautiful music, painting massive ceilings and representing their country with pure, elite physical activity. Military leaders and wise philosophers just following their passions and callings, despite their brains flipping out on them here and there.

Re-booting

So what’s different now then Liz? Are you going to start bleating words of wisdom again?
Well yes actually. My epilepsy is no different to when I was diagnosed. It hasn’t progressed, it hasn’t changed form and it hasn’t spread or become contagious. But my outlook and actions are very different.
Everyone’s epilepsy is different; symptoms, triggers, seizures, treatment. But it is a general condition where one can maximise control. Here are my epilepsy revelations that I have recognised over the years and top tips:
Sleep like a bear- it sounds obvious but it isn’t always. I have considered lack of sleep to be my main seizure trigger. If I was ever sleep deprived, I’d have been at risk of some form of seizure. This may be from stress, alcohol, sleeping in an unfamiliar place or a combination. I once had a little mini-break to Devon. I was stressed from not being able to sleep after the Jagerbombs, in a different bed in a B&B and p*ssed as a fart. I had ‘waves’ throughout the next day and was practically comatosed by the time we got home.
Since I have made my bed time hours old age pensioner-like and more importantly regular, my electric brain has been very calm.
Look after your body and brain– I know I banged on last time about food but I can’t emphasise enough the difference it has made for me. I am not on a calorie counting diet (although I do keep tabs on it) but my main priority is to eat enough of everything. I’m talking carbs, protein, fats, as well as enough vitamins and minerals. I’m no Joe Wicks but I know how to throw a healthy, yet tasty(ish) meal together. Don’t assume I never have a treat because I do. I can have scary amounts during a takeaway and/or confectionary item binge. Chuck me into McDonalds and I’ll bet I could out-eat any of you.
I invest in good quality vitamins, which are Omega 3, Magnesium, Vitamin D (which everyone should take in this sun-deprived country), Zinc and Vitamin B12. All are good for brain function.
I drink as much water as I can glug down. Dehydration is another trigger for me. So I’m that strange fish at the end of a night out, slurring at the barman to give me two pints of tap water.
I also find it essential to make an effort to look after my body, keeping it moving and keeping it strong. I enjoy resistance training at the gym so I go to the gym. I also like a good walk, so I walk. I don’t enjoy long distance running, so I don’t run long distances. It’s as simple as that. Any form of movement can do wonders for you mind, as well as your body. It’s not easy, I won’t pretend it’s a breeze getting going in the morning. But it’s worth investing the time and effort.
I have to be careful with alcohol as well. I shouldn’t actually have any, as per professional advice. However I know my limits but that’s a responsibility I have to take on.
Since these changes, as well as positive mental attitude, I have managed to come off one medication (the one with hideous side effects) and reduce another! So I’m living proof of how whatever you put in your mouth, has a direct effect on your brain function (don’t be rude. You know who you are).
Living this way and therefore reducing medication is probably one of my greatest life achievements. So I have no reservations in boasting about it *grins from ear to ear
Accept and respect medication– as much as I promote a healthy lifestyle, sometimes you have to accept that medication and even other forms of surgical treatment are what’s needed. They keep you safe, even if only taken temporarily. When I had a period of uncontrolled epilepsy, I had my medication ramped right up. The effects were horrible, I felt like a different person and I had never seen anyone on the amount of tablets I was on (in the neurological nursing world). I was on three different types of medication twice a day, plus one strong one that I took when symptoms were more severe.
That’s a long story but eventually when I became more stable and felt healthier, I decided to take some control and seek help in reducing them. I decided I would do whatever it took to come off the one with the worst side effects (Topiramate if you’re interested), even if it meant increasing the others. There was no negotiation on that, in my mind. It turns out I didn’t need to increase the others and I even managed to reduced one of those as well (Levetirecetam).
Please don’t think, in ANY way, I am recommending doing this without a specialist’s help and guidance. NO way should you take this on without professional planning and monitoring. I simply sought out a Neurologist who specialised in Epilepsy and pharmacology (on our wonderful NHS, not privately), told him what I wanted to achieve and the rest was history.
Be happy- some of you may have rolled your eyes at this one but it is as simple or as difficult as you make it.
Don’t feel sorry for yourself, don’t focus on your limitations and what you ‘can’t’ do. Wake up each day and be grateful that you’re alive and that you are living your life. Be grateful for being able to open your eyes and see your loved ones and the world around you, that you can walk to the bathroom for that morning wee and that you can taste your healthy and not so healthy food. Make the best of what you have.

Don’t get me wrong, I still have my moments and I always will. It’s not going anywhere but I feel in control now, rather than feeling controlled.

Super power? What super power?

As we reach the end of this post (which I have loved every minute of writing by the way), I come back to the super power. The super power I had as a young teenager and the super power I have now. The one I have after losing it years ago and clawing it back.
Resilience!
Epilepsy isn’t my super power, epilepsy doesn’t give me a super power. But it gives me a reason to create one. To create my own power and strength and make friends with my electric brain.

I’ll leave you with another highly inappropriate and perhaps offensive joke. If you have a bit of twisted sense of humour, Google epilepsy jokes. There are some shocking ones. If not, just stop reading now.

Epileptic Santa
…. he seizures when your sleeping

8 comments

  1. Liz you are an amazing writer.. so beautiful how your brother wished his presents away to make you live.. love your honesty in this blog .. bloody amazing .. your an amazing beautiful person 😘☘️❤️

    Liked by 1 person

  2. Liz you are such a brilliant writer.. what a lovely honest blog about your AMAZING resilience to your super power!! But you do know your super cool at everything you do..I know I’m a crier and I did cry.. your lovely brother wishing his toys away to keep you alive 😢😢😢.. Your a beautiful person inside and out…( which I think is highly unfair).. to put it simply your fooking amazing 😘☘️💕

    Like

  3. Well, I think it’s cool you joke about it. I do, too. I had a slightly disorganized background and strange wave coming out of my left hemisphere after they checked me. My doctor said I didn’t have epilepsy. Sometimes, I will randomly fall down. I black out for a few seconds. Then I’m back to normal. Thanks for sharing your story. You are a talented writer.

    Liked by 1 person

      • I have schizophrenia and, no offense to myself, am not especially bright. I find others aren’t Einstein as well. I can’t imagine what it must be like to have had them from such a young age. You’ve dealt well. Keep in the sun!

        Like

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