Confessions of an epileptic shopaholic

 
Helen Purves

Life with non-convulsive epilepsy can be a challenge. Helen Purves recalls some of the more unusual and even dangerous things she's done during the lengthy seizures that affect her brain but not her body.

"Tramp sit touch hit bite smell."

It's not your average text message, but many of the people on my contacts list have become worryingly accustomed to receiving this kind of thing from me over the years.

It's not due to late night drunken binges. It happens because I have epilepsy.

I was diagnosed with something they call simple and complex partial epilepsy when I was 22, although I've probably had it for most of my life.

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I can talk, I can text and it seems I can also turn into a shopaholic during a complex seizure”

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Like many others with hidden disabilities, I mistook my condition for madness. It's thought that Joan of Arc may have had it - she believed she'd been touched by God, which might have been a more comforting or attractive belief.

When people think of epilepsy, they tend to imagine someone convulsing painfully and uncontrollably on the floor. As someone with a non-convulsive variety, I do lose control - but much more interestingly.

I stay wide awake for two or three, very long, minutes, while the world spins around me. I see unearthly shapes appear in front of my eyes and I have no power to control them.

That's the simple variety. The complex episodes last much longer - up to half an hour, if I'm unlucky - and during them I wander around like someone completely detached from reality. I do retain the power to speak, although my brain can't hold much more than a sentence.

So I can talk, I can text and it seems I can also turn into a shopaholic during a complex seizure.

Joan of Arc statue Joan of Arc: Visionary or epileptic?

On one occasion I came crashing down to earth in the middle of a Tesco Express while reaching for a packet of pork chops. I hate pork chops.

Once the episode had passed, I found myself with a shopping basket filled with dozens of different washing-up liquid bottles. Interestingly, none were yellow.

What is epilepsy?

  • Condition that affects brain and causes repeated seizures, also known as fits
  • More than 500,000 people in UK have condition - usually starts in childhood
  • No cure, but anti-epileptic drugs (AEDs) can control seizures in about 70% of cases

Another time, I woke up on my sofa surrounded by empty crisp packets and 34 pints of milk. There were also several unopened tins of formula milk.

In my slightly panicked, post-ictal state (a scientific term which roughly means "an epilepsy hangover") I took the lot to a local cafe, claiming to have run an unsuccessful coffee morning. I never visited the cafe again.

My most creative shopping spree seizure happened shortly after entering a large supermarket. I was walking home before I came to my senses, and found I was carrying bags containing three melons, seven lemons, black hair dye, shoe polish and Mexican food.

Most of the time I can't remember my complex partial seizures after the event - but I have had tiny flashbacks of that particular trip, and they're not memories I cherish.

I recall being in the fresh fruit and veg area next to the melons and trying to communicate with the woman standing beside me.

Bottles of milk How did they get there?

"Melon," I said, gesturing towards a melon. Then I pointed at myself: "Helen."

I carried on. "Helen, melon... melon, Helen," until she tentatively passed one to me.

If you replace melon with lemon and repeat, you'll get a good sense of how the evening continued.

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Of course, it's all terribly funny - until someone gets hurt. However hilarious my antics may be, the knowledge that I could lose control of my own brain and body if I miss even one dose of my medication is incredibly scary at times.

Recently I woke up in A&E (luckily I was completely fine) but a neighbour had found me standing in the middle of a road in Manchester asking strangers how I could get home to my parents in Lincolnshire.

Awareness of non-convulsive epilepsy is low to non-existent, so I find myself having to fend off questions about my sanity more regularly than I'd like.

Luckily my friends, colleagues and family all look out for me. But if you ever find me wandering the street with bags full of cabbages, feel free to intervene - I'm not scary, just scarily epileptic.

Read Helen's blog

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  • rate this
    +1

    Comment number 21.

    20.Drunken Hobo


    You wouldn't be able to read it - for the incredible things a person can do during a Simple Partial seizure typing is not one of them (at least not one I have ever come across).

    Typing at such times usually leads a load of random letters vaguely strung together.

  • rate this
    -2

    Comment number 20.

    Would be interesting to trigger one of these when she's writing her blog, just to see what she'd write about.

  • rate this
    +7

    Comment number 19.

    One of the things I dislike about being epileptic is the look I get from elderly people on the bus, I have a disability bus pass because I am unable to obtain a driving license, when I get on the bus I get dirty looks from old people because they think only the elderly are entitiled to a pass.

  • rate this
    +5

    Comment number 18.

    2.speed_of_dark - ".....can help the public understand that unusual behaviour doesn't mean someone is dangerous or mad...."


    Indeed - the stories are legion of people having Partial Seizures being throw violently out off nightclubs & "tazered" by the Police or parents being reported to Social Services for "being drunk" when picking the kids up from school......

  • rate this
    0

    Comment number 17.

    5. Stacey ->

    One of my friends has been recently diagnosed with PNES. She says herself they're scary episodes when she, for want of a better word, 'fits'. I think PNES is even less known/understood than non-convulsive epilepsy, and most people who come across her when she has them seem to automatically assume it's epilepsy.

  • rate this
    -10

    Comment number 16.

    Sometimes, i wonder if much of these sort of sufferers are just more amplified examples of what most people already are, or are becoming to a lesser degree within this exploitative, shallow, hedonistic, 'civilisation'.

  • rate this
    +1

    Comment number 15.

    Interesting. I have had a range of epileptic students in my classes over the years. One with petit mal, long time ago in Botswana, would occasionally say he had forgotten his tablets, we had to believe him and get him home immediately (even though at times I did feel he was getting out of doing the next piece of work!).

  • rate this
    +2

    Comment number 14.

    As a fellow epileptic I can relate. I was diagnosed at the age of 14 with, in ye olde english, Grand Mal epilepsy. I am now approaching 30 and recently have been diagnosed with pseudo-seizures, as well as generalised epilepsy. I often take violent convulsions, which can often be mistaken for an epileptic seizure.

  • rate this
    +15

    Comment number 13.

    The article on tax has 183 comments in 55 minutes, this one 12 in 16 hours. This is by far the more interesting and enlightening article.
    People forget that the most complex organ, and the one with which most things can go wrong, is the brain.

    Thanks for sharing, it is very much appreciated.

  • rate this
    +5

    Comment number 12.

    One of my sisters has something similar & when it affects her she just freezes & remains motionless but perfectly upright if she's standing, balance is not affected which is odd & you can push her & she won't fall over, but she is well & truly completely switched off & remembers nothing at all about it. It's worrying when she's crossing a busy road & it happens right in the middle!

  • rate this
    -4

    Comment number 11.

    This remind me about my friend. She always heard something in their head which were never true. However, she believed it's true. Now, my friend is getting better as she have a treatment called "human power energy". The lady is just user her concentration and touch to my sister brain. Then after times, we found that her behaviour is back to normal.
    Hope it will help

    Jotrong
    [Unsuitable/Broken URL removed by Moderator]

  • Comment number 10.

    All this user's posts have been removed.Why?

  • rate this
    +11

    Comment number 9.

    Thank you for this story. A teenager once wrote me an essay on how her epilepsy (kept secret) had ruined her life and turned her family against her because, as a Muslim, she could no longer get married, and only her religion stopped her from killing herself. I told her of my cousin who had epilepsy from age 6. Later she became one of the school's top students. Sharing the burden really helps.

  • rate this
    +7

    Comment number 8.

    Thank you for sharing! I have epilepsy, and have always felt that my brain did it's best to help me during a fit (getting me safely off a ladder, for instance.) My fear of a missed dose is bad enough - I cannot imagine the fear you must face in missing that same dose.

  • rate this
    -2

    Comment number 7.

    3.Doric
    4 Hours ago
    Thanks - I have learnt something here! But please do join us in refusing to use the term 'Formula' dreamt up by the likes of Nestle to make artificial babymilk sound 'clean and scientific' - let's call a spade a spade!


    +++

    It certainly doesn't clean up third world water that's used to make up "formula" in place of natural mother's milk.

  • rate this
    +7

    Comment number 6.

    I am an American epilepsy patient with grand mal seizures (the stereotypical variety). I just cannot imagine what you're going through Helen. I had some good success with Tegretol, so as long as I REMEMBER (memory problems and epilepsy go together like milk and cookies, sadly) to take my meds, I am seizure free. There's a lot of us out there! Chin up Helen!

  • rate this
    +8

    Comment number 5.

    That was a really interesting read Helen, you remind me of my best friend who was also diagnosed with non-convulsive epilepsy in her early 20s. To cut a long story short, it turned out she didn't have epilepsy at all, she was actually suffering from psychogenic non-epileptic seizures or PNES.

  • rate this
    +10

    Comment number 4.

    It's great that someone has made a great piece of work, out of a difficult mixture of experiences.

    Epilepsy should be talked about, it's far more varied than many people realise.

  • rate this
    -3

    Comment number 3.

    Thanks - I have learnt something here! But please do join us in refusing to use the term 'Formula' dreamt up by the likes of Nestle to make artificial babymilk sound 'clean and scientific' - let's call a spade a spade!

  • rate this
    +14

    Comment number 2.

    It's good to see another article that can help the public understand that unusual behaviour doesn't mean someone is dangerous or mad. I'm on the autism spectrum and have been judged for doing odd things; far more scary to be completely out of control for periods of time as this women describes.

 

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