Who do you think you are?

A neurologist is paid to help their patients and they usually do.

A neurologist is supposed to guide you, listen to you and recommend the necessary medication to make you better. Or so I thought. This wasn’t going to be the case with me and until recently I used a neurologist who didn’t have those qualities.

I have learned very quickly that even the medical profession don’t have the answers you need straight away. After twenty years of having a condition they are still trying to establish what causes my brain to behave the way it does. In the past the nurses and previous specialists gave me the stability I needed, whether this be because I was younger I can’t answer. Unfortunately I was an adult now not a child lying in hospital asking questions.

Medication has become a safety blanket for me. Although I have come to terms with what I have, if I fail to take this medication regularly I start to panic a tad. I ensure I remain alert and try my hardest to not exude myself and get stressed just incase a shake/seizure should catch my off guard. The words I say to myself now is “If it happens, it happens, what can you do” You just have to dust yourself off and continue as normal.

I wasn’t a big fan of the new “shaky bouts” and they were coming thick and fast. I had only adjusted to the fact that the epilepsy had returned but to welcome these bouts was one step too many. I therefore went back to neurology to try and establish what was happening.

My name was called by the nurse who then ushered me into the neurologists room for further discussion. The gentleman who awaited me was a middle aged man with a strange prescence. He shook my hand and sat me down. He didn’t know my name and gave the impression throughout the 15 minute discussion that he didn’t want to. He asked me to run thorugh my condition briefly with him as he had never bothered his arse to read through my medical history.

To utter the very words “Do you like being epileptic” and “Are you now coping” was a fucking disgrace. Who was this person? I was under the assumption this man had just walked off the streets with no recolection as to what epilepsy was let alone a doctor specialising in that field.

The neurologist asked why I was there. I ran through my symptoms and tried my best to enlighten him about the shakes and the pattern that had emerged. Like the previous post I ran through the four stages with him explaining that the latter shakes were causing discomfort and distress. Whilst writing his dossier of our appointment he said “Are you sure you aren’t bringing them on yourself?” Who the hell was this dude? “No of course not” I said to him.

I was in a position where when I grew older I questioned that quote however thought to myself that if it was down to anxiety then surely I would have had the shakes since I was 8 years old not 11 years later.

I explained to the neurologist that my medication had been increased following an influx in seizures and that on the higher dosage they were relatively stable. I continued to advise that my family and I could only presume the shakes were replacing the seizures and that possibly my epilepsy was taking a different turn. He acknowledged that this did appear to be as a result of my medication and advised that I record my shakes in a seperate book to monitor their frequency. I was doing this already with my fits. Could he not say anything else?

I was outraged to say the least as were my parents, it was only when we left his room that it sank in what we had just witnessed. What has this doctor just said to me? In my eyes first impressions count and I wasn’t impressed at all. He was a fucking prick and I didn’t like him.

The initial appointment I had with him I put down to him having a bad day. Everyone has them however when you are a doctor you really shouldn’t be taking your emotions out on your patients.

To say to anyone “Do you enjoy being epileptic” was appaulling. I was incensed as were my parents. My grandmother demanded that I get a second opinion as this neurologist wasn’t prepared to give me the supervision I required however I told her to remain calm and to wait and see what conclusion had been drawn.

Shortly after my appointment a letter came through the post addressed to me. Here my neurologist branded me a “young lady with a worry about her condition” and “She assures me that she is well however is experiencing the occasional shaky episode”. Are you joking fella? I was having the shakes all the time. There was no mention about the shaking stages, the increase in medication or the amount of seizures I had since my last appointment.

I was speechless. This man wanted me in and out of his surgery ASAP. He didn’t care.

You think that appointment was odd, the second appointment was even funnier…

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6 thoughts on “Who do you think you are?

  1. I only discovered in 2007 that I had epilepsy an still can’t accept the fact I have it I get scared I have pushed all my friends away just don’t no how to cope 😦

    • Elsie

      First and foremost thanks for taking the time to read my blog. I can associate with you fully on this one. Try not to be too harsh on yourself.

      I wouldn’t be too concerned about pushing your friends away as such as if they are your true friends they will be there for you regardless. In relation to the way you are feeling. Do you feel that no one understands? If so then I have felt that way since I was diagnosed, it is only until recently that I have managed to accept that I have the condition. I would suggest if you can focus on the positive aspects of your life. i usually when feeling down turn to a relative or my best friend for a chat, it sometimes helps. Look at your condition as part of you and try if possible not to worry about the seizures scaring you. Just try and focus on what makes you happy and challenge your energy into that if you can.

      If you cannot train your mind in that way I would recommend going to your local GP/neurologist and asking for CBT (Cognitive Behavioral therapy). I have undergone it and found it extremely useful. It has changed my thought pattern entirely and has really made me conquer my fears. I would highly recommend to all. I will be writing about this further in my upcoming posts so if you think this would be beneficial to you by all means see what you think. Hope this has answered your question. If you wish to discuss anything else drop me a message or tweet me on blogsazzles. x x

      • Thank you very much for replying you are very kind your words made me think I do need to accept the fact I have epilepsy its a part ov me and who I am I will look into the behaviour thing thanx 4 recomending it x x

      • Elsie,

        Not a problem I am here to listen and advise anytime people want to chat. Epilepsy is a part of you. As long as you stay true to yourself and are happy with the people around you when you are not fitting then that’s the most important. Be true to you and keep smiling. Sazzles xx

  2. I used to go out with my friends maybe once or twice a month to ge some space but since being told about being epileptic Its hard 4 me to go out I no I can trust my friends an if I did start fitting they wud help me so pushing them away was my way to cope and now I feel lonely and upset wen they go out and don’t invite me so its my own fault really x x

    • I was the same as you. I wouldn’t feel upset as its normal that you are going to worry about taking unwell when out. If you sit with your friends and explain then they should understand.

      I don’t go as much now either as I too get panicky. To this day it’s hard to remain focused and care free. If you do go out see how you go. Have one drink and if it’s going well stay out a bit longer. There’s no time constraints as you are in control. Rest assured your friends will understand. Step by step I say xx

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