Good evening ladies and gentlemen, and welcome to this short post on living with epilepsy. I know that some of you were expecting the third and final post in my shoulder surgery series (I apologise to those who are); I assure you that delight is still to come. However, I have just been approached by one of my best friends Alex Haigh, who has asked me to write this post. She is a carer for her partner whom, like me suffers with a complex epileptic disorder, and she would like more information on how it feels to live with the condition. I should also take this opportunity to mention that Alex has very kindly offered to write a guest post on this blog on caring for someone with epilepsy. I hope that we can bring you that soon. I hope this helps either those who have just been diagnosed or those who care for an epileptic person to cope. If I can help in any way, please comment.
what is epilepsy and which type do I suffer from?
I find it useful when explaining about my condition to people, to firstly explain in layperson’s terms what epilepsy is and how a seizure occurs. Epilepsy may be described basically as a disturbance in the electrical signals in the brain resulting in seizure, in which there are many different types. I have suffered from epilepsy for a couple of years now, and we are unsure as to why it has developed. A number of credible theories have been proposed however, there is no way to prove any of them. The specific type of epileptic disorder from which I suffer is called Idiopathic Generalised Epilepsy. This means that the disturbance in electricity can occur anywhere in the brain at anytime, and spreads from that point to affect the whole of the brain. When this occurs, a seizure starts. I have no warning when I am about to have a seizure, which makes my type of epilepsy particularly dangerous. I suffer from two different types of seizure (there are many different types); Abscences and Tonic-Clonic (Grand-Mal) seizures.
When I have an absence seizure, I will just usually stare into space and start fidgeting with my fingers. If you were to call my name or ask for my attention, I would just continue staring. Even if you were to shake me, you would not get a response. These happen to me many times a day and often go unnoticed as they only last for a split second or two. If I were to be standing during an absence seizure, I would usually just stop and stare, whilst stood up. People usually think that these seizures are not generally dangerous, however I have had a couple of close calls. I was crossing a pedestrian crossing when the red man (don’t walk) sign was on. I had an absence seizure in the middle of the road and was nearly hit by a car, a friend of mine pulled me out of the way as soon as she realised what was happening. Not only did I feel embarrassed but also very frightened, as I nearly got myself killed.
Tonic-Clonic (Grand-Mal) seizures
When I have a Tonic-Clonic seizure, without warning I will become stiff, tensing every muscle in my body (at once), at this point I may stop breathing. If I am standing I will fall, (not crumple) to the floor. I have sustained a number of different injuries when in this type of seizure, including injuring my shoulder (please see my three post series on my shoulder surgery). It is easy to see why this type of seizure is extremely dangerous. I will then become floppy and start shaking very fast, all my extremities shake pretty much in sync, giving the seizure the strange shaking appearance that often represents ‘classic epilepsy’.
A Tonic-Clonic seizure is also the type of seizure that most people associate when they think of the condition. This shaking lasts for anything up to five minutes (with me, my longest has been eight minutes). During the fit, I may become in my lips and under my finger nails, this is due to lack of oxygen to the skin and is a serious sign. Once the shaking has stopped, my body relaxes, which is when I may become incontinent of urine and/or faeces (meaning I may pee or poo myself). This is because of the sudden relaxation of all the body muscles. Having a Tonic-Clonic seizure is very embarrassing, especially when you have become incontinent or have the seizure in public. It is also not as recognised as you might think with people not generally recognising that you are having a seizure or just walking past as they do not wish to get involved. I wear an SOS pendant, which alerts members of the public who come to my assistance that I am epileptic (see below). I would say that although I am not frightened to leave the house, I am weary as I get no warnings. I am usually accompanied either in person or over the phone when travelling, and always ensure that people know where I am heading and what time I am leaving. My medication is also quite complex too, having to be taken at certain times of the day. No doubt, this is something that Alex would discuss in her future post.
Epilepsy poses many challenges in terms of how I live with it, there many barriers that need to be overcome (especially your modesty). As you can see from the pictures in this post, failure to manage epiulepsy properly can result in more time being spent in hospital or on the surgeon’s operating table (as in the case of my shoulder surgery).
I would like to remind everyone three main pieces of advice when dealing with someone having a seizure, these are:
- Don’t panic – Move any hazards out of the way, do not move the person – The person should not be obstructed from fitting
- Never insert objects into the person’s mouth to prevent them from biting their tongue
- Telephone for an emergency ambulance if either the patient has been in the seizure for over five minutes, they have a blue appearence to the skin or you are unsure about anything.
I hope this Helps