I wasn't going to write this post but it's been bothering me so I thought it would be best to get it out of my system.
When I was 24, I was diagnosed with Epilepsy and a lot of aspects of my life got quickly turned around. I don't accept half of them and I am stubborn as hell but changes had to be made, even if I don't do them all the time because I suck.
Recently I have been to two events, one blogging related and one personal, and have experienced two different people and responses in terms of my condition, one treated me as though as I was an inconvenience to her and the other was so amazingly helpful (
read more about this lovely person at Secret Cinema here). It got me thinking about taboos and essentially people's understanding of it as a whole.
Epilepsy isn't easy to understand so I do get some of the confusion. The minimalist poster above created by an artist called
Cagedmountain on DeviantArt is a good example but maybe only for a certain type. Epilepsy isn't the same for everyone and a seizure doesn't necessarily have to be
Tonic Clonic (AKA Grand Mal) like you see in the movies or, most recently, Eastenders.
I suffer from Tonic Clonic seizures but I also have Absence Seizures. Apparently
over 500,000 people in the UK have epilepsy and 1 in 50 people will have at least one seizure in their lives. A lot of these can go misdiagnosed and I think that it's partly down to people not realising they've had a seizure, possibly because they were Absence Seizures.
As someone who has experienced them before, the best way to describe Absence Seizures would be like, having that feeling where your eyes are 'comfortable' and you're staring into space without really noticing. Kind of like going blank. Also, apparently not everyone gets that feeling as though they're falling so maybe that counts.
These seizures may seem like a nicer option but they're really not. Sometimes I can have a horrible headache and even blurred vision for hours after having one. Not fun.
Following my diagnosis I have experienced a lot of different responses, had a lot of questions, received a lot of statements/assumptions and during my research have come across comments about Epilepsy. Some are interesting and understanding but others are downright ridiculous. Here are a couple:
- What does it feel like?
- Are you OK (whenever I even just have a cold)
- How did you get it?
- You don't look disabled
- You don't look like you have Epilepsy
- Is it contagious? (Saw this one online, seriously?)
Thinking about some of these, I thought it would be a good idea to do a shout out on Twitter so I could answer any burning questions people have. Unfortunately not a lot of people recognise the condition and it isn't really talked about so it wouldn't be surprising if people had them. Here are a few I received with answers.
This is a really good question. Unfortunately I can only speak from my own experience and therefore I don't know enough about all the different types but you can go to the
Epilepsy Action website for more info.
Unlike some people I don't tend to have just one seizure, I will have a couple in a row in short bursts. My general rule is, if I have more than five then you need to call an ambulance. If I don't, just wait for me to come to and then I will just need a cup of tea then go home to sleep.
During a Tonic Clonic seizure all you really need to do is:
- (If possible) catch them
- Don't move them, instead clear the area of hazzards
- Protect the head, put something underneath it like a coat or a pillow, if these aren't available rest on your lap
- Do not restrain - you could hurt the person or they could hurt you
- Do not put anything in their mouth. It's a myth that this will stop the person from biting/swallowing their tongue but in fact it's dangerous for them and you. What if you get bitten? It can be like lockjaw
- Make a note of how many seizures and how long they last
- Once the convulsions have finished, move into the recovery position
- Some people take a while to regain consciousness and will be quite confused. So be reassuring and talk to them normally.
- If their seizure has lasted for longer than five minutes, it's classed as a medical emergency so call and ambulance
I have looked into this and unfortunately I don't qualify because looking at
the information online, you need to have at least 10 Tonic Clonic seizures per month with no changes to medication six months before you apply. Luckily, I don't have that many but a seizure alert dog would be awesome.
I guess a way to describe it would be, you know how dogs can sense storms? It's like that. The dog will be trained with you to learn your specific symptoms and activity. They can then alert you to get into a safe place. Kind of like having a big fluffy aura (sign) that you're going to have one. Being able to get into a safe place by yourself would be wonderful because not only do you know you wouldn't be seriously injured but also people who have many seizures feel like they have a bit more independence. There can even be panic buttons that the dog would press to call an ambulance if the person is alone at home.
Affecting my life personally? Dude, I just want a dog but I'm lucky enough to need a special one.
Spoons no, but there was one time when I regained consciousness with a pencil in my mouth which isn't exactly safe! What if it broke in my mouth and I choked?
I have a wonderful boyfriend, fantastic friends and family and very supportive colleagues. One friend in particular has been there from the very beginning, attending neuro with me and making sure I eat enough. Gary is essentially a hero and he even researches things regularly to see if there are any updates in the Epilepsy world.
I do struggle to cope sometimes as a fair few things get 'ruined' for me like having a seizure at an Amanda Palmer gig plus that one at Secret Cinema last week. Now I'm kind of used to it though I just go by the process of 'If I don't laugh, I'll cry', therefore my seizures are called 'brain farts' instead.
Well, during research-ness we found out that if you cover your dominant eye it takes longer for your brain to register it. I'm not sure if this is a scientific fact but from trying it myself I can say that it works, for me anyway. I made an eyepatch last year so I could go on the Smiler at Alton Towers (has strobes at the beginning) and have worn them to a couple of gigs and have come out the other end seizure free. #Win
As a whole, Epilepsy is no longer a problem for me. There used to be days when all I wanted to do was cry because I refused to believe that my life could change so suddenly and that I would be taking daily medication ('like an old lady', I used to say), go for regular check ups, have scans and sticky things all over my head (a la Total Recall), cut down on drinking, not be allowed to drive etc etc. I was 24 for God's sake. I just want to go to the pub with my friends on a Friday night and only have to worry about the Saturday morning hangover, not waking up in the hospital with a cannula in my arm.
Now after two years of dealing with this invisible disability, I'm finally OK. As OK as you can be and hopefully people will start to understand soon and the stigma will go away.
