How I took epilepsy on board

As a person with epilepsy I will be focusing on my social life in this paper, and one of my hobbies, namely windsurfing, is reflected in the title. My main reason for choosing to focus on social life has been influenced by events that have occurred, and also my work as a psychiatric nurse where I feel a patient’s social life is not awarded sufficient priority in health care. By doing so I hope to raise the awareness of the readers to the importance of this area of health care. I will describe a variety of issues related to my experiences of having epilepsy and its interrelationships with my social life. It should be noted that I will focus upon how epilepsy affected my social life and how my social life affected my epilepsy including positive as well as negative issues. Due to the word limit placed on this paper I will not be able to cover all aspects that could be included, but relevant points related also to other aspects of my life will also be incorporated where appropriate. I will begin by giving a brief medical history. I will then describe various events that occurred throughout my life, and discuss their effect on my development as a person. I consider the term ‘social life’ in a broad sense which encompasses the effect of my epilepsy on my relationships with friends, boyfriends, potential partners, my strategies for disclosure of epilepsy and the subsequent results will also be included where relevant. Throughout the paper I will include relevant references. I will conclude by summing up the main points and what it has taught me. I developed epilepsy at the age of 12 years with the first seizures taking the form of absences which incorporated me standing and rocking for a short period of time and then being confused for a few minutes before complete recovery (classified as petit mal, now classified as generalized absences). My mother was a psychiatric nurse and she took me to my GP who referred me to the neurologist at the local hospital where the necessary investigations were done. After approximately 18 months the seizures just occurred when I was asleep (classified as grand mal). At the age of 16 years the seizures stopped for 2 years, reasons for this will be discussed in detail later. When the seizures resumed they occurred in my sleep, and were a gentler version of the tonic–clonic seizures described earlier, with no headaches or tongue biting. During my twenties I experienced two tonic– clonic seizures whilst awake due to an accumulation of several stressful events, but then they resumed to occurring only during my sleep. In my early thirties a stressful event caused me to experience several simple partial seizures which took the form of either a facial tic, or a tingling sensation down one arm, neither occurring with any loss of consciousness. Due to my consultant neurologist doing nothing to assist or explain reasons for no action despite an obvious change in the form the seizures occurred, I changed consultants and with a change in medication and an event that boosted my confidence, the seizures ceased and I have not experienced any since September 1985. At this time I was diagnosed as having temporal lobe epilepsy. The interrelationships between these events and my social life has fascinated me and they will now be discussed. Following the initial investigations I received the diagnosis, but was puzzled because I had not experienced or seen any evidence of my behaviour during or after the seizures and initially did not want to accept the diagnosis. The diagnosis led to prescription of medication and a banning from my favourite hobbies which included cycling, ice-skating and swimming. I quickly adapted to taking medication regularly, but the aspect I found most awkward was having to leave my school friends during lunch and go to collect tablets from the school secretary. Having established this as a routine I adapted to it and due a change in the frequency and occurrence of seizures, eventually the midday dose was stopped. The ban on swimming was hard to handle as I learnt to swim when I was 5 years old and represented my Brownie pack at the district swimming galas, gain-