Research….excitement…

So I’ve been really lucky to be involved in some research with the neurology research team into how technology could be used to answer the needs people with epilepsy actually have, not those others might think they have. I will put the link on this blog if it ever manages to get published!!

Part of this is a grant application for funding. Something that needed me to drop my feelings as a researcher, sociologist and project manager, and think about what I actually need, what does matter to me in my life as someone with epilepsy in the here and now. It was hard. But I realised in doing this that no matter how much research you have done, the same basics needs are still there, and due to lack of funding for research into epilepsy (just £12 a head), they aren’t being met. Hopefully, this might lead to real benefits for patients and I’m so proud and grateful to have been allowed to be involved.

But anyway, due to word limits we had to edit it. But I wanted to save what I had written somewhere, so that perhaps in the future I can look back and see how much I’ve improved. Or just to look at and think that I can speak/write like a human sometimes!!

So here is the unedited version:

What is Epilepsy?

epi·lepsy

[ˈɛpɪlɛpsi]

NOUN

1. a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. (OED

But what is it really?

• Epilepsy is waking up, not knowing where you are, why you are there, with people shining lights in your eyes, shouting at you, with a mask on that smellsso bad

• Epilepsy is not knowing whether you will have your night out, your meal, your workday, or end up in hospital.

• Epilepsy is people being so scared of you, the seizures you have, that you lose friends. Some directly stating you are making too much of it/not looking after yourself, some just drift away as the invites to do things stop coming in case you have “a moment”, and “episode” with them (why will no one call it a seizure?).

• Epilepsy is desperately trying to keep friends and to not worry family, so saying that everything is fine, that you are “dealing with it really well”, that its “easy to accept” because you don’t want them to be scared, feel uncomfortable.

• Epilepsy is wanting to ask questions, just not knowing who to ask them too. You don’t want to bother your poor doctor/specialist as they are such tiny questions.

• Epilepsy is not getting answers you understand, orgetting two different answers. Not going away on holiday because you couldn’t make a decisionbetween the two answers you get.

• Epilepsy is needing to have the answers to questions so that you can justify to others why you are able to do things (even when it isn’t their decision to make), fighting for the right to have fun and achieve.

• Epilepsy is constantly risk assessing, trying to find and then work out which information you believe, so that you can live the most normal life can and want

• Epilepsy is being told/asked “should you do that”, “why did you do that” when all you wanted was people to look forward to/celebrate your achievements

• Epilepsy is having to constantly fight for your independence whilst fighting not to upset people. It is about people overstepping boundaries and making decisions for you, yet when you try and raise it being told “but we only want the best for you”.

• Epilepsy is trying to hide your real feelings so you don’t scare people, trying not to argue with people, politely smiling or adding smilies when given advice you know is wrong, but then wondering if you are wrong and they are right,

• Epilepsy is having to cope with everything whilst you are so tired from AEDs and/or seizures, tired of the world and fighting to be yourself.

Life changes.  One moment.  “I fainted”, or did I?  An MRI, a hospital appointment for an EEG and ECG. Youhope desperately that it was a one off or a provoked non epileptic seizure.  

Then finally an appointment where the doctors confirms that you have epilepsy.  There are meds to take, everything becomes a blur of words as you cannot process anything (and this sets the theme for every appointment you ever have afterwards).  You walk out of the office and nothing feels any different.  You wonder if you heard it right.  You are told you will an appointment in x months, so it doesn’t sound so serious.  Then you get home.  Suddenly everyone is an expert. Everyone has an opinion, a view, knows someone with epilepsy and applies that knowledge to you.  So you go home and read on the internet, you email the hospital and ask some questions; back comes an FAQ sheet.  You find there are so many epilepsy charities but once you read as many as you can the advice seems to be as brief as the FAQ sheet and it doesn’t actually seem to apply to what you want know.  

You I really feel like the one thing you have relied on to be you; a photographic memory, instant recall of data and conversations has been taken away, making youless of a person. Your body has let you down completely in a way you don’t know how to overcome.  In the end everything becomes confusing.  And you still don’t know where to go for help.  Things are spiralling, but you know you have to do something.

So you go on social media – there you find more opinions.  Some people are so certain that you want to trust them, but you then realise that what they are saying is not what others say. In fact everyone is saying something different.  You don’t want to keep hassling the clinician as you know the time is valuable, and when you do have an appointment they are so short, you must discuss medications, some of your questions are so trivial or embarrassing there is no way you are going to ask them face to face.  But sometimes you are brave and email the department/secretary; you get the reply “we will respond to you in 3 working days”.   Unfortunately you needed an answer quickly so that you could confirm that you were attending something; you have now missed the opportunity.  

You feel so miserable, even whilst the full impact around the lack of independence and freedom that this diagnosis has, having to rely more on others has fully sunk in, and this is being made worse by confusion, lack of certainty, not having anywhere you can easily have communication with. Then you find that epilepsy has a huge stigma, that you will lose friends, you are always in danger of upsetting family who you know are “only acting in your best interests”, the issue being they don’t ask your needs.  

Now you are angry.  You are told by friends who have cancer and other illnesses that they have been given pathways, counselling, have access to “wellbeing and lifestyle support” from charities.  You have nothing.  You don’t have anyone to ring to ask a question without feeling guilty, let alone wellbeing support.  So you ring the charity helplines to find a truly lovely volunteer, however they have no answers as can only read from the pre-prepared sheets they have.  A nice chat but actually all you wanted to do was shout at them for not being able to answer you, and at the same time just cry down the phone because you feel so useless, helplessand guilty for feeling sorry for yourself.  Because you know that feeling sorry for yourself is a way to lose even more friends, upset more people, not help the job that you’ve had to change to progress.

What you want is an easy way to ask the questions that YOU have, that will allow you to have conversations rather than arguments, to make sure that you convince yourself and others that you aren’t taking unnecessary risks.  That you can prove that you are allowed to swim/cycle and conversely what the driving rules are.  Where you can ask the embarrassing questions, or the ones which might lead a clinician to make a judgement of you if it comes across wrong.  That perhaps technologies can be suggested meaning that you can do activities on my own that previously people with epilepsy were told they couldn’t do at all. You want to know that these answers are correct but that whoever asked them also understood that you are a person before a patient.  

You need the help to risk assess activities differently now from people qualified and of an understanding to be able to do so.  And you need that support quickly, even if its at 1am when your friends says “shall we go to Pompeii – lets book it now” so you don’t miss out on that opportunity.  And above all so that people can understand that you are still the person you knew before and have always known and can do so much more that they might think or have heard.