Confessions of an epileptic shopaholic
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.
I can talk, I can text and it seems I can also turn into a shopaholic during a complex seizure”
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.
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.
"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.
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