Despite labelling this blog as The Epileptic Man, I haven’t even mentioned one important, annual event that began in 2008, and now takes place in many countries around the world. Held on the 26th of March, Purple Day is an international, fundraising affair looking to raise awareness of epilepsy worldwide.
First of all, I want to make one clear point for everybody to understand: why are people looking to raise epilepsy awareness?
Others may have heard a variety of epilepsy-related charities wanting to do this, but then thought ‘why do I need to learn so much about epilepsy? It’s not the worst health problem in the world. It seems like a little too much to me…’.
Well, the key reasons we want to raise awareness are simple: epilepsy doesn’t have a cure, and epilepsy can be complicated.
It Really Can’t Be Cured
When any person comes to gather epilepsy, its effect on their lives isn’t going to match problems of other people who have also held the condition. Epilepsy can have a major impact on your life, from both a physical and mental perspective. It can also have a minor impact, with much lesser problems to manage.
But whenever you know that epilepsy is a condition you must manage, you always need to play it safe and manage it with anti-epileptic drugs, and some people need to take more than others.
Back in the 11th Century
From 1010-1041, Byzantine Emperor Michael IV the Paphlagonian was a historical figure that is said to have had epilepsy. Like me and many others, Michael was subject to tonic-clonic seizures, although when he fell to the floor other people only believed it to be demonic possession – punishment for his sins.
Religion was a lot more common at that time and when people came across tonic-clonic seizures taking place, it’s fair to say that a lot of other people believed this as well.
People’s Awareness has Improved… A Little.
Raising awareness would help a lot of people with epilepsy. According to Epilepsy Action’s ‘Purple Poll’ held in March 2017, six out of ten people said they have felt feelings of loneliness since they were first diagnosed with the condition.
In my previous blog post, I talked about how the anti-epileptic drug side-effect of memory loss has probably been my biggest problem since epilepsy started to bother me. It led me to a fair bit of social anxiety and feelings of loneliness while I was studying at the University of Salford.
Although it’s quite a common problem for people with epilepsy, memory loss has only been my worst problem, not everybody’s. It’s also common for people to feel lonely because they have to deal with triggers, tiredness and other side-effects that often occur with people who have epilepsy.
Triggers can differ from person to person, but common triggers for epileptic seizures include:
- Not taking medication, and not taking medication at a set time daily
- Sleep deprivation
- Alcohol and recreational drugs
- Flashing or flickering lights
Being more organised and strict with yourself could help stop your seizures from happening so often. It might well be a little frustrating to begin with, but I think you’ll get used to it. Find out more about triggers on the Epilepsy Action website.
Fatigue and Tiredness
Sometimes, fatigue and tiredness aren’t brought on by medication side-effects – if you’ve got epilepsy, you’re more likely to deal with it. There are ways to do this, but I can recall plenty of times I’ve started to feel tired when socialising with friends. Part of me has so often wanted stay, but it’s also difficult to get involved in the conversation when I’m feeling tired and starting drift off. In the past, it’s certainly made me feel secluded.
Nevertheless, using this advice to overcome fatigue and tiredness should help quite a bit:
- Keep yourself eating regularly
- Become more physical active
- Focus on losing weight
- Talk to your GP for advice
- Cut down on drinking so much caffeine and alcohol
- Get yourself into a good sleep routine
Again, you can find out more about fatigue and tiredness on the Epilepsy Action website.
So, you want to know what the other side-effects of AEDs are? Well, I can name quite a few common ones. There are many types of AEDs that hold a few different side-effects that others don’t, although it’s not so uncommon for AEDs to share the same side-effects as well.
People with epilepsy might well experience nausea, vomiting, diarrhoea, abdominal pain, wind, drowsiness, dizziness, headaches, nervousness, depression, confusion, lack of concentration, aggression, tremor, insomnia and skin rash – but there’s more than that.
And tell me, is there any problem on that list that might well be frustrating for you if you wanted to go out socialise with friends? Yes – every one of them.
Just think about it. Having a laugh with friends could well be a lot more difficult if you’re hit with a feeling of sickness. And vomiting? Any person with epilepsy who’s just having a nice chat with somebody they met in a bar might look a little odd if they need to hurl in the nearest toilet.
Feeling dizzy, getting a headache, having diarrhoea, passing wind… If other people don’t really understand what’s happening when this happens, then it’s certainly something that might lead you to experience feelings of loneliness.
Learning a Little More
Today, people are a lot more aware of what epilepsy is than they were in the 11th century, but often don’t seem to understand why it bothers us so much. If they only obtained a respectable overview of the problems it causes, they’d be doing around 60 million people worldwide a big favour.
And that’s why I certainly believe Purple Day was an important annual event to set up in 2008. It brings more attention to epilepsy, helping to raise epilepsy awareness and bring-in money for every epilepsy-related charity.
If you’re willing to learn a little bit more about epilepsy right now, then why not take a look at the charity websites? As a British writer, I best know that Epilepsy Action, Epilepsy Society, and Epilepsy Research all provide good information to anybody who needs it. In the USA, Epilepsy Foundation also seems like a handy place to get your data.
If you’d like to read up more about Purple Day, and even donate a small amount of money to it, then you can always check out the main website, or go to the overviews provided by Epilepsy Action or Epilepsy Society