Hi, I’m Jane.
I am not a doctor and I am definitely not an expert on epilepsy, or any other neurological condition. I suppose I am however an expert on having epilepsy. I know what it feels like to have a seizure, to have injuries caused by having a seizure, and I know what it feels like to constantly have to explain your condition to other people.
I suppose that is my reason for starting this blog. For the six years since I was diagnosed, I have found that although epilepsy is the most common serious neurological condition, it is commonly misunderstood and is surrounded by stereotypes. Ironically The Mother already worked for Epilepsy Scotland before my first seizure, and since my diagnosis I have worked with the charity to help bring about a better understanding of the condition through various means.
When I was first diagnosed I didn’t fall apart, I was only twelve so I just accepted it for what it was. As I got a bit older I started to hate it, I grew to resent having to take medication all the time and the constant worry of seizures was exhausting. Now I’ve reached a stage where I don’t hate it, I’ve grown to accept that it’s part of me, and I’ve tried to turn it into a positive thing via my work with Epilepsy Scotland. However that doesn’t mean to say I don’t have my down days, days where I would give anything just to wake up without having epilepsy, and this blog will probably end up bearing the brunt of my moans.
However I do hope that it helps people without epilepsy to understand it a wee bit better as well as any people who do have epilepsy that come across it, if not for any other reason than I need justification for my moaning.
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Me and my epilepsy
Hi, I'm Jane.
I was diagnosed with Juvenile Myoclonic Epilepsy when I was twelve years old, and since then I have been involved with Epilepsy Scotland in raising awareness for the condition.
As an extension of my work with Epilepsy Scotland, I decided to start a blog on my experiences with the condition. My aim is to help people with or who know people with epilepsy, and also teach people who don't know a lot about it about some of the difficulties I personally have come across in dealing with the condition.
I however am not a doctor and so I have to be very careful with what I say. I can't give out advice, I can only comment on my own experiences with it, so I'm sorry if I'm not much use in that respect.
I thrive on comments however, so feel free to leave a question for me and I'll get back to you as soon as possible. If you don't want to leave a comment, but would like to speak to me, my email address can be viewed through my profile.
Thanks for visiting my blog and I hope it can be of use.
I was diagnosed with Juvenile Myoclonic Epilepsy when I was twelve years old, and since then I have been involved with Epilepsy Scotland in raising awareness for the condition.
As an extension of my work with Epilepsy Scotland, I decided to start a blog on my experiences with the condition. My aim is to help people with or who know people with epilepsy, and also teach people who don't know a lot about it about some of the difficulties I personally have come across in dealing with the condition.
I however am not a doctor and so I have to be very careful with what I say. I can't give out advice, I can only comment on my own experiences with it, so I'm sorry if I'm not much use in that respect.
I thrive on comments however, so feel free to leave a question for me and I'll get back to you as soon as possible. If you don't want to leave a comment, but would like to speak to me, my email address can be viewed through my profile.
Thanks for visiting my blog and I hope it can be of use.
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10 comments:
You were diagnosed at about the same age as me! Though most of the time I just get frustrated as my epilepsy seems to have got worse over the last year or so with so much difficulty concerntrating, reading totally different things to what's written down, or writting different things to what I'm thinking, and just generally feeling dead and having shakes and such. Ahhhh the joys of epilepsy and trying to get through uni!
What type of epilepsy do you have? They say that the type I have is normally diagnosed around puberty, so maybe it's the same, or similar.
At the moment my epilepsy is somewhat controlled but it's still not perfect so no driving license for me - but I'll be ranting about that in future blogs no doubt!
Thanks for your comment :)
Hi there. My son was diagnosed with JME last year and I am worried about his educational development, as stressful, high concentration situations like exams seem to prompt seizures. Did you have a strategy for managing your epilepsy at exam time?
Hiya, it's JME I have too.
When I was in high school I was given special conditions because of my epilepsy. We (me and my mother) spoke to my neurologist, who then wrote a letter to my school. I was then asked to meet the educational psychologist at the school, who decided I should be given extra time and a separate room for my exams.
I found it an amazing relief to be in a different room from everyone else. I found it lessened the stress of the exams, and the extra time reduced the first minute panic nearly everyone experiences when they first turn the paper over.
I'm now in university studying for a degree so although having epilepsy did add another worry to an already stressful time, it didn't stop me from getting into university, so there's no reason it should hinder your son either :)
Hi Jane, we met in The Ark! Suprisingly you mention about bus passes, I have one too and on my way home from Glasgow I flash it at the driver who quite rudely tells me that he doesn't accept them and waits for me to pay! I know exactly where you are coming from!!
Unlike you I was diagnosed at the age of 2 and although reasonably well controlled - the level of ignorance, lack of information available as well as the lack of emotional support from friends, family and teachers made my school years far unhappier.
Ignorance of my epilepsy (Bullying)made my self esteem, confidence and ability to express myself, or explain my epilepsy far worse.
Had I had the information at hand alot younger, I might not be so unsure of myself 20 years after leaving school. The bullying has left its mark, and although my fits are still not fully controlled, my ability to tell people about my epilepsy and self confidence has improved a great deal just in the past few years.
One final note I'd make which nobody seems able to comment on is the way the mostly Grand Mal fits I have make me manic afterwards.
If anybody who experiences this change in their mood could tell me how fits affect them afterwords I'd appreciate it.
I have had epilepsy since I was around 7 years old and am now 43. I have temporal lobe epilepsy, which makes me haullicinate ever so slightly when having a partial seizure. These can lead to full blown seizures. Maybe its my personality, but have never let it hold me back, despite over the years having fits in class in college, on buses, in my workplace, etc.
In my teens and 20s was quite lax at taking my medication, but finally gave myself a good shake and got seizure free enough to get my provisional licence and be able to drive.
Unfortunately on reaching 40 the seizures came back unexplicably. Now taking a real high dosage of Tegretol and Epilim (which have always agreed with me) and have been seizure free for 1 year.
All I have learned throughout the years that there is no magic pill that can make my epilepsy disappear or make my memory improve (downside of my form of epilepsy).
Oh, and if it helps you Jane, I have'nt been a stranger to having a drink or two with no side effects - Elaine.
Helen - it was lovely to meet you at the Ark the other week. Bus drivers, and even on the trains, can be really rude. I refuse to pay though, so that's where my stubborness comes in handy!!
Anon - I was never bullied for having epilepsy, but I was bullied for other 'reasons' and I know how terrible it can be. After grand mal seizures, I tend to sleep for about an hour afterwards. If I'm woken up, I am incredibly confused and thankfully have never been alone when I've had a seizure, as who knows what I would do if I didn't have somewhere there to keep me calm.
Elaine Smith - Good for you for never letting it hold you back! I am almost completely seizure free on quite a low dose of Epilim, but unfortunately to be 100% seizure free would mean a higher dose of Epilim and unfortunately I put on a lot of weight with Epilim, which I am not willing to go through again (it was a rough time). I have also now embraced the vodka full time, like the true student I am :)
Thanks to everyone for your comments.
HI JANE
MY SON WAS DIAGNOSED WITH EPILEPSY AT THE AGE OF TEN.HE HAS PETITE MAL SEIZURES FOR THE MOST PART BUT HAS HAD A COUPLE OF LARGER ONES.HE HAS PROBLEMS CONCENTRATING ON THINGS AND I WONDERED IF YOU COULD SUGGEST ANYTHING TO HELP HIM
From a personal point of view it's not something that I've had a problem with, but with some medications I did have problems getting my words out.
I think the best advice I could give you is to consult the Epilepsy Scotland helpline for suggestions (I know the woman on the helpline and she's lovely :))
The number is 0808 800 2200
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