Appointments

This week I had my annual appointment with my epilepsy specialist nurse. The appointment letter had been taped to my fridge for a year and yet I only just remembered to go.

When I was first diagnosed I think (though I can't be sure because The Mother has gone to bed so I can't ask her) that I had check-ups every six months and now, with 'partially-controlled' seizures they have been reduced to yearly appointments. With the appointment this week however, I found that even annual appointments seem quite frequent; they feel a bit like going to the dentist when you don't have toothache.

My first neurologist and epilepsy specialist nurse were located in Yorkhill Hospital for Sick Children which I loved. The Mother and I would always try and arrange appointments around meal times because Yorkhill has the best canteen food in the world. I visited Yorkhill from the age of 12 until I was about 17 or 18 and The Mother was always there with me. In my old age however I have been shifted from children's hospital to 'grown-up' hospital. The Mother insists I am old enough to go myself and she probably has a point, but I miss the macaroni cheese and chips days of Yorkhill.

The first appointments I had at Yorkhill were often quite complicated. As we didn't know which medication would work for me, many years of trial and error passed, with many side-effects, many disappointments and many questions asked. Although The Mother - and by extension myself, knew a fair amount about epilepsy before my diagnosis, there is something quite different about it when it applies to yourself. I found myself uncaring as to how it affected other, hypothetical people - I wanted to know how to control my epilepsy.

These days however, my appointments are routine. My last 'big' seizure was over a year ago and I am happy with where my medication is at the moment. I remember being 15 at Yorkhill and being warned about the driving regulations as it wouldn't be long until I was 17. '17?' I thought to myself, 'that's postively old'. And now, here I am, 21 and being warned at my grown up hospital about the combination of medication and pregnancy. As the nurse finished with 'so if you're thinking about pregnancy, come back and see me' I just managed to stop myself from saying 'but I'm not old!'.

Apparently, I am a grown up now. Sigh.

Strobes

Most people in life have some sort of fear, many have more than one. Spiders, heights, divorce and failure are all considered reasonable and just things to fear even although not everyone fears them, and from those that do, not everyone fears them to the same degree. No one can deny that fear exists and fear is as individual as your fingerprints.

I do not like wood louse and can never manage to dispose of them myself. I hate being stuck in the middle of a crowd of people and I panic at the thought of disappointing my parents. When it comes to thinking of a topic I truly fear however, there is only one topic I can think of: the loss of control that comes when having a seizure and as a result – strobe lights.

Strobes are used to provide regular flashes of light and are used in industry and science. However, as a student, I am most likely to come across them in clubs where they are used to give the effect of slow motion. They are white in colour and flash so quickly, many people can be disorientated when they are in use.

I first came across a strobe light when I was in hospital after my first ever seizure. A common test used by neurologists to diagnose epilepsy is the EEG – a test which measures the brain’s electrical activity. By placing a strobe light in front of me whilst I was linked to the machine, any potential seizures I would have because of the light would be recorded on the EEG machine and a satisfactory conclusion could be made as to my diagnosis.

I was twelve years old when I had my first EEG and I was told about the strobe light beforehand. However, I did not know that the doctor perceived a potential seizure and as I had little experience of seizures I did not know what it would feel like. However, seconds after the light had been switched on I remember feeling “strange”. My arm began to move without my consent and my blood ran cold. Thankfully, the doctor, who was watching the monitor, stopped the light when she realised what was about to happen.

Since that test, I have had a fear of coming across strobe lights but unfortunately they are almost impossible to avoid. For my 21st birthday, The Mother bought me tickets to see Lord of the Dance. Unfortunately the strobe lights were on almost continually, which meant I had to spend the majority of the time covering one eye. What was the point in using strobes for a dance performance? They certainly didn’t add any enjoyment to it for me, and when we were leaving we overheard a woman complaining about the lights and how they had given her a headache.

Luckily, photosensitivity in epilepsy is relatively uncommon – less than 5% of people with epilepsy are photosensitive and even with those who are, medication should be able to control it. Despite this, most people without much knowledge of epilepsy assume that everyone with epilepsy is affected “by lights”. However it is only a small amount of people with epilepsy that are affected by certain types of lights.

The Titan Crane

Over the years I've done various things with Epilepsy Scotland to raise awareness from small jobs like stuffing envelopes in the office to speaking to a room full of politicians about my experiences with epilepsy (something I never, ever thought I'd be able to do!). Epilepsy Scotland runs events throughout the year in order to raise money from fancy dinners to zip slides across the Clyde. This year however, the challenge is a little different. Brave volunteers will instead abseil down the Titan Crane - an 150ft high crane on the banks of the River Clyde.

This year however, I am wimping out! My boyfriend Ian however is taking my place on the 4th of October, bravely pulling on his harness and lowering himself down. I'll stay safely on the bottom, taking photos and offering morale support, whilst thanking my lucky stars it's not me going up there!

If anyone would like to help Ian and Epilepsy Scotland, you can donate at: http://www.justgiving.com/IanWilliams7/

Photos will follow :)

Chatting with a member of parliament

This is me doing my bit for Epilepsy Scotland with my local MSP. I spoke to him about my experiences with epilepsy and in particular my experiences as a student. He was very nice and seemed genuinely interested in what I had to say.

Remember me?

I am a disappointing blogger and for that I can only apologise. A while back, I was half-way through my third year at university, totally stressed out and needing a break from the internet. I deleted my personal blogs and abandoned Just Epilepsy, always with the half-hearted hope that I'd return at some point. After receiving a kind email from someone who had discovered this blog and had been disappointed at its discontinuation, I have decided to finally update.

Currently the summer holidays are nearing an end and as a consequence I am beginning to face my fourth and last year at university. I now officially have a degree which makes me feel very accomplished but I'm heading back soon for honours. I've spent the last three months successfully avoiding planning my dissertation but now, with nothing left to procrastinate with, I have found myself beginning to write notes and panic at the prospect of writing 10,000 words by myself.

Epilepsy-wise, things are going well for me. I haven't had a full-blown seizure for over a year now and my jerks are probably on an 'every-so-often' basis. My medication has been the same for three years now (Epilim and Keppra) and as long as I remember to take it, things seem to be fine. There is scope for improving my seizures further still but I am comfortable with my medication the way it is, with minimal side effects and so for now, I think I'll be leaving it as it is. Don't fix it if it isn't broken and all that.

So for now, I am back updating Just Epilepsy, however please bear with me as I am very out-of-practice. I will try my best :)

Brothers

Brother Number Two once spoke to me as I was lying on the floor, post-seizure. Confused and silent, I just looked at him as he spoke gibberish, laughing hysterically at himself being so funny.

I didn’t know whether to be offended or amused when he told me this last night.

I'm back!

I cannot believe the last time I wrote a blog here was in July. Shame on me. I am refusing to give it up however, as there are people who occasionally make it here and I hope they come across something worthwhile when they do find it. Nevertheless, I am going to make a resolution to blog here more often!

There is not a huge amount going on epilepsy-wise in my life at the moment. I have not had a seizure since July, not a major one anyway, but I have had some wee myoclonic jerks and some ‘faces’ as I call them. Certainly not complaining though.

I am in third year of university now, so non-epilepsy life has become a little hectic with presentations and essays, etc. I was also elected as the student representative for disabled students in the English department, so I’m working with one of the lecturers at the university to improve some things for disabled students within the department. One of the ideas we have is for a ‘safe’ room, where for example I could go if I thought I was going to have a seizure and didn’t want to do it in public, or if someone with diabetes needed somewhere for their injections.
Anyway, I’m sleepy, so I’m off for some much needed sleep. I will be making more of an effort here though, I promise!