Pick us up on Purple Day

Okay – here’s one random fact my mind might have been born with. I can honestly say that purple is my favourite colour. Is it common for a man to make this sort of judgement? I’m not sure. However, there are psychological reasons that colours can be favoured. I can’t deny that the description of a person who’s often interested in purple matches my personality.

But still, I do love my home city. I could argue that Manchester’s history and culture plays a role with my feelings too. Those who support football clubs in Manchester are split into two sides; the red and the blue. Of course, after these two colours collaborate, a purple outcome is what instinctively appears. I’m proud that Greater Manchester is primarily left-wing. To me, politically, the more we all agree on what works best the stronger we seem.

This month, the colour purple has another reason to interest myself and many others. 65 million people worldwide have been diagnosed with the health condition it advertises. Now, epilepsy’s obviously not something positive for any person to acquire. But making people more aware of epilepsy on Purple Day is one action I’m happy to tackle.

Part of a family as I welcome more friends

As I welcome additional readers and friends alike, disabled people are obviously great allies. It doesn’t matter what disability you have. You’re disabled. If that’s the case, then we’ve immediately got something in common. I can only hope a positive connection is gained between us both as time continues. Friendships are something I’m so happy to start, but no person works well with everyone they meet. We may well both be disabled, but sometimes we’ll have personalities that clash. When that happens, it’s only something to accept.

However, I can’t help but gain a greater connection to disabled people with similar issues. I have epilepsy and always appreciate the positive actions of other people with the condition too. Plus, I don’t want to raise money to gain better rights for disabled people. Nobody should; all we’re looking to obtain are equal rights, and no charity should force that. However, in 2015 I raised £700 when I climbed Ben Nevis for a charity. The money I made was for Epilepsy Action, a great organisation I’m happy to be a member of.

In a way, people with epilepsy are more like members of a family. I know that like me, a lot of disabled people have dealt with obstacles in society. However, people with epilepsy are likely to bump into similar social barriers that I’ve dealt with. For example, epilepsy can lead to memory loss, and that’s so often stopped people from employing me. It’s also led to me being let go from jobs as well.

600,000 people have epilepsy in the UK. Epilepsy is far from the same for every person who it frustrates. But still, the lifestyles we live are occasionally similar. 66% of working-age people with epilepsy are unemployed, and I know this problem has bothered others as well.

Why not learn a little more? It won’t take long

Although it’s respectable to stay updated about epilepsy, I’d say I understand my condition quite well. I’ve lived through various situations when it’s been causing me trouble. Sometimes I’ve felt very stressed by it, and sometimes I’ve felt calm. At times, epilepsy’s led to me feeling moderately depressed after making mistakes. But I’ve also made my achievements. Afterwards, I’ve only felt proud and positive about my actions too.

Purple Day is here on the 26 March. We look to fund new research that can help us investigate epilepsy. There continues to be no known cure for the condition. Today’s treatments are usually anti-epileptic drugs (AEDs), and these drugs appear with many attached side-effects. Fatigue, headache, hand-tremor and stomach pain are just some of those I’ve dealt with.

However, things could be worse. People sometimes suffer more because these treatments won’t even work. That’s why medicinal cannabis, a very effective drug that’s difficult to obtain, has been so craved by many.

Epileptic seizures are always what we’re looking to control. Although tonic-clonic seizures are the most commonly recognised, there are a lot of different types of seizure. Personally, I have an average of around one seizure every two weeks. Some people just have an average of one seizure per year, but some have tens of them every day. If this is the case, then it obviously has a huger impact on their life.

I plan to learn a little more

Earlier this month, I paid to register for the 6th International Conference on Epilepsy and Treatment. It’s supposedly taking place in Rome on 21-22 September 2020. Obviously, the event could be cancelled or postponed to a later date. However, refunds are available if needed, and it’s too soon to know whether Covid-19 will still be here.

If it happens, a week away in Rome sounds appealing (if it’s safe). Plus, I’ll also enjoy being updated about upcoming treatments for people with epilepsy.

There’s a lot to know about epilepsy

Epilepsy is undoubtably complicated. However, I believe it is interesting and so useful to know about as well. There’s a long list of other important points to pick up about it. As damaging as it is, SUDEP exists; sudden unexpected death from epilepsy. Knowing how to help people deal with epileptic seizures well could stop it occurring as much. If any seizure lasts for longer than five minutes, it is known as one form of status epilepticus. The person having a seizure is endangered; you should ring for an ambulance.

If you’d like to know about other treatments, there are options available regarding surgery. Brain surgery is one for a few to use. However, like many others, I wasn’t eligible for it. But the next best option in line was vagal nerve stimulation surgery. Although it doesn’t work for everyone, since my procedure in October 2019 I’ve had good gut feelings. Improvements are expected between six months and two years after surgery. For six out of every ten people, it tends to cut seizures in half.

Does your disability mean something to you?

Do you have a disability that you understand well and would like to speak out about? Please, get in touch. I also know that it’s World Down’s Syndrome Day on 21 March. However, I don’t feel inclined to say much more about that. I’m not a doctor and don’t have to live with the condition either.

Right now, Purple Day’s the focus of this post.

So please, head down to one of the following websites to either find out more, and/or donate to one of our charities today. Why not speak out about it on social media too? It’ll be very much appreciated.

Epilepsy Action

The Epilepsy Society

Epilepsy Research UK

Epilepsy Foundation

Young Epilepsy

SUDEP Action