what it’s like having epilepsy

disclaimer: this is my experience, and my experience only with having epilepsy. this is an illness that affects everyone differently, and i am just telling my story.

epilepsy can develop in any person at any age, myself had my first seizure and was diagnosed with epilepsy when i was 16. almost 1% of the entire population will develop epilepsy during their lifetime. that means approximately 60 million people worldwide.

my seizures:  i have generalized tonic-clonic epilepsy, this means i’ll get the seizure people think about when they think about epilepsy. this seizure involves the entire body, and it is called grand mal seizure. i tend to lose consciousness, so i fall down wherever i am, then i’ll start shaking and moving around, all muscles are being used, so i am really tense. after about three minutes of shaking and having cramps i’ll go into a deep sleep. this is because my body has used up all it’s energy. when being hospitalized after a seizure, and the medical staff have taken my blood sugar levels, they have been so low that you can’t read them. after the deep sleep (lasts about 20 minutes) i’ll wake up having amnesia and being confused. i am also exhausted and i can not speak very well (i had a seizure at work last year, in an english speaking business, and i had forgotten how to speak english, which made it quite hard). i have the worst migraine i have ever experience, head hurting so much all you want to do is vomit. after a seizure all i want to do i sleep.

you might have a seizure once in your life, provoked by illness or drug use, but you’ll only be diagnosed with epilepsy when you have two or more unprovoked seizures. i had my first grand mal seizure in january 2007, i woke up at the hospital with memory loss and a heavy migraine. my doctor said that i might be suffering from epilepsy, but that he could not know for sure until i had my second seizure. after four months, it came and in april 2007 i was diagnosed with epilepsy. that was the start of a long journey with tests, trying to find medication and mostly being tired.

in the eight years of having epilepsy, i have tried five different medications for treating it, all of them have helped me not having a lot of seizures, but they have all had side effects. those include not being able to concentrate, being so tired you can not focus, having no energy at all, gaining weight, stuttering, depression and being more forgetful. since epilepsy is a neurological illness, the medication will effect your brain in certain ways which in my experience is almost never positive. i am currently trying to get my doctor to agree with me when it comes to quitting my current medication (fycompa), as i would prefer to have a seizure now and then, instead of all the side effects.

the problem with me and my epilepsy is that i know very little about the situations i have been in where i have been suffering from a seizure. i only know what people around me tell me, and since they are mostly strangers, i feel people are scared to speak about it, they do not share a lot of information with me or the others around them. i have no recollection of what has happened, and would really want to know. i have had seizures in a lot of public places, ending up with me waking up at the hospital not knowing what has happened. this is a very strange feeling that would probably be helped if i had known what had gone on.

so, how do you help someone who is having a seizure?
some people who have epilepsy have a card in their wallet with information about their seizures or a necklace with the epilepsy-symbol on it. i used to wear the necklace, but it had no effect, as nobody recognized the symbol. there are some steps helping a person who is having a seizure:
1. keep calm
2. time the seizure (if a seizure lasts longer than 5 minutes, you should call the ambulance)
3. protect the persons head
4. DO NOT put anything in their mouths (they used to do this, cause they thought it helped stop the seizures)

this is the epilepsy symbol:
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i am quite lucky when it comes to epilepsy, as i rarely get seizures and it does not really affect my daily life (except for taking medications), but the risk of having a seizure is always there, so i have to take pre-cautions. i am not allowed to drive, bathe or do any sort of extreme sport. the only thing i tend to do is shower in the evening, so i am not at risk having a seizure in the shower (it has happened before).

but there are other types of epilepsy, and some get seizures several times a day. there are lots of ways to treat epilepsy, like with a ketogen diet, planning everything you do, having an operation or taking medications.

a myth about epilepsy is that everyone reacts to blinking lights, this isn’t true. most people with epilepsy do not know what triggers their seizures. i sadly do not know what triggers mine.

i hope you all learned a bit about epilepsy, and you might also enjoy this list, listing the famous people who suffered or is still suffering with epilepsy.

how would you react to someone having a seizure?

/fredrikke

ps: there are lots of videos about this on youtube, here you can also see people having seizures and learn more about different types of epilepsy. i would also recommend reading here (if you know norwegian) and here (if you know english).

what is it like to live in stoke-on-trent?

when i moved to stoke-on-trent about 1 and a half year ago, i knew almost nothing about the midlands. the only thing i knew, was that there was a team called stoke city (which i am a big fan of) and that i had gotten a full-time job as a translator there. i was 22 years old, i knew nobody in my new hometown and i was pretty nervous.

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you’ll see this owl everywhere in stoke!

stoke-on-trent, also known as the potteries, is a city by the river trent in staffordshire. the place is has six smaller towns, called stoke, hanley, burslem, longton, tunstall and fenton. stoke-on-trent is greatly recognized for their pottery industry, a thing you understand that the average stokie is still quite proud of. i used to live up hanley, which has most of the shopping oppurtunities (including the shopping centre intu potteries). i used to work when these were open, so i didn’t really spend much time shopping, but i can definitely recommend this to visitors. this because the shopping centre has a great stoke city fc-shop!

as i mentioned earlier i was quite nervous when i arrived at the city of oatcakes, but luckily this passed quite fast. i got settled in hanley, i lived in a traditional english brick house and i also got in the routine of work really fast. working in stoke-on-trent i had varied days, because i did not have to speak a lot of english at work. i worked in a scandinavian team, which meant that i learned a lot more danish and swedish, than english on a daily basis. the company had a lot of different employees from different countries, like the netherlands, poland, greece, spain and a lot more. this definitely made the working experience a lot more fun, because you learned bits and pieces from all the other nationalities.

Skjermbilde 2015-03-06 kl. 22.34.43  the building on the left is where i used to live.

but in my spare time, i got to speak a lot of english. i really fancy the stoke-accent, i must say. especially their use of the word “duck” which originally came from the word duke. this is a common designation of affection towards both men and women. this word is mostly used at the end of a sentence. one of the sentences you hear most often is “ay up, duck?”, which can mean “whats happening?”, “how are you” and “hello”, it all depends on the way you say it. try it next time you meet a stokie. i think i’ve never met anyone from stoke who does not find it fun to make a foreigner speak the stoke-accent.

when i moved to stoke, i thought my english was quite good, but i had a hard time understanding what locals were saying to me in the shops, on the bus, at the pubs etc. but i believe that one can get used to almost anything, and now i almost feel like a “duck”.

Skjermbilde 2014-08-21 kl. 21.12.37britannia on a friendly match day.

i have heard that journalists often does research for their articles, so that is why i decided to do the same. i asked a lot former foreign colleagues what they liked about living in stoke, and i got a lot of great answers:

– it is really easy to get to stoke city matches, both home and away (because they have free transport to away games).

– if one is originally from a foreign country, stokies tend to find us exciting and it is easy to make friends.

– rent and travelling is really cheap. stoke-on-trent is in the middle of england, so you can travel anywhere cheap and fast. it is also a great place to groundhop!

– indian food is great in stoke (the best restaurant is called sangam)

– student-night in hanley on mondays, where the alcohol is almost free!

– oatcakes – a type of pancake, but with oats in it. you can buy these almost anywhere. they are served hot with some type of filling. this is often cheese and bacon. stokies love them so much, and get offended if you make fun of them.

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one of the greatest games last season, against arsenal.

i would really recommend living in stoke. it is a great place, with great people. if you do a quick google search, you will find out that not a lot of englishmen like stoke. the readers of the telegraph named it the 10th most ugly place in all of england. i have experienced that englishmen in general make fun of stoke-on-trent when i say that i’ve lived there, the funny thing is that over 50% of those people have never been or plan to go to stoke-on-trent ever. so their arguments are not really valid, i guess that stoke-on-trent is just a place with a bad reputation.

after reading this experience, i hope you will take the time to someday visit the home of the great potters!

PS: you might not know what these famous people are from stoke:

– lemmy kilmister (motörhead vocalist)

– slash (most known as the guns n’roses guitarist)

– robbie williams (known from take that)

Skjermbilde 2014-08-21 kl. 21.45.35picture from the robbie williams exhibition at the local museum.

have you ever been to stoke-on-trent?

/fredrikke

wishlist for my birthday

soon i am going to be one year older. i definitely don’t feel one year wiser. but a lot has happened this last year. one new thing is that i moved to a new country! but since my birthday is getting closer. i thought i would share with you 5 wishes for my birthday.

1. since i’ve always been more fond of menswear, i wish for this sweater from frankie morello:
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2. i wish for a micro pig.

3. since i once day wish to move to edinburgh, because it is the city of my dreams, i wish for a mews to live in:
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4. after a night of long conversations about the double doubles, fries made while you watch, secret menus and how special you feel when you stand there with a number in your hand, waiting for that meal made just for you. all i wish for right now, is a meal from in n’ out burger.

5. i’ve been really fond of the munch-drawings by steffen kverneland for a long time, and i have the first book, but i want the whole series in one. he draws with such emotion and makes me fall in love with edvard munch and the kristiania bohème all over again. this is a book i am longing to read over and over again.
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what are your birthday wishes?

/fredrikke

about me

here is some information about myself.

this is me:

Skjermbilde 2013-12-27 kl. 21.43.06

what is my name:
fredrikke von z. wongraven

how old am i:
23 years

where am i:
i live in stoke-on-trent, staffordshire, england. but i originally come from norway.

what do i like to do:
photography, travel,  look at gingers, furnish, go to football games,  sell thing via my etsy, listen to good music, work out, read & eat.

what will this website be about:
travelling, photography, furnishing, football, gingers, music, literature & whatever i find suitable.

what is the purpose of this website:
to show my interests and get in contact with people who might have the same interests.

if you were wondering about something just pop a question! i would love it if you would want to follow me.

/fredrikke