Queen of Sleep

Living with narcolepsy: a personal journey


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Last Monday, I went for an assessment at my local psychotherapy clinic. It was two years ago, that I initially asked to be referred to see a psychologist. It has been 2 years of assessments and referrals. It started with an in-house CBT psychologist at my specialist. I asked for the referral myself as I am determined to beat narcolepsy and get on with my life. After spending 15 years undiagnosed, I had developed so many defense mechanisms that it was impossible for me to get any work done at all. I would be late, panic in the waiting room, have cataplexy attacks in the waiting room then go on to chit chat with the psychotherapist. After 6 sessions it became obvious that CBT was not right for me. The psychologist referred me to the Tavistock for assessment. I waited for 3-4 months and eventually saw a psychotherapist there. I found it almost impossible to communicate my issues and the therapist became tougher and tougher. A new strategy which really worked for me. She asked me to come back for another session a month later. I started to realise how my life had fallen apart. It was hard to start to look at how. During my second second the therapist explained that she had to refer me to my local mental health service. She wanted to be sure that I did not need anti-psychotic drugs. I knew I did not need them. I knew I did not have any mental health issues. I just wanted someone to understand and explain to me how I could deal with narcolepsy and move on. I had told her about my hallucinations. Now, I am not sure if it was wise to do so. My hallucinations have never been negative i.e. go and hurt your self/someone else. You are worthless and so on…
My hallucinations consisted my of hearing voices coming from people who did not say anything but seem to say things to me. Most of them time, I never suggested that I heard them but on occasion I would be taken aback and repeat it or say “what did you say”. They would reply “how did you know?” or I did not say anything. Sometimes in between waking and sleeping I would speak to the person sleeping next to me while they were sleeping. Sometimes I would hear people in the living room while I was sleeping through waking up until I got so irritated I had to get up and tell them to fuck off. And they did. I learned to identify voices in my head – slightly different tones as if they had different personalities. It did not destroy my life only confused me because it is not regarded as normal or At this point in my life, I was permanently sleep deprived. My employer did not understand how I could perform so well some days and so terrible other days. I could only work a few days a week. I did not apply for any benefits, my finances were terrible. I could only survive by living with friends. I would be grateful to have 1-2 nights a month deep sleep. Most of my sleeping time was spent in REM dreaming i.e. exhausting.
After seeing the psychologist at the local mental health centre, a very young man who had huge difficulties understand what my issues really were. It was so frustrating. I had to start to bring a friend to help me explain – and to make sense of me being helpful and me being honest. It is difficult to be honest when reality and dream always mix.  I was not lying but I told my experientiell reality. He, as so many others can’t have had any experience of the difficulties of being narcoleptic so he referred me to a recovery centre. Another set of assessments started to take place. More frustration came out trying to explain my difficulties again. I was lucky, the first lady who did my assessment saw through my willingness to please and it because obvious to me just how suicidal I was and had been for such a long time. My allocated key worker at the recovery centre was unfortunately a waste of space and my time. I almost think she was afraid of me. She was very one-dimensional and I unwillingly managed to fool here along with all the other staff and was out after 3 weeks. I fought for a while to change the assessor as my key worker but my request was turned down by the manager of the centre. When I was asked to leave, I felt bullied into leaving and my feeling to please kicked in, partly because the consultant seemed to act like a car -sales man. In and out with patients, the quicker the turnaround the better. In retrospect, most of the clients seemed saner than the staff at the NHS recovery centre. At this point, I had waited 1,5 years to see a psychotherapist. I got a community care plan. It felt important and odd. My referral got lost in the process and after 3 months not hearing anything about my 4th referral I contacted the recovery centre – they never replied. I spoke to my specialist’s secretary who told me that it should be the GP’s job to refer me so I brought my plan to my new GP. When it comes to narcolepsy, don’t expect a GP to know very much (they can’t know everything), just instruct them what your consultant has asked you to tell them. They will listen to you. So far, I have not come across a single GP that is knowledgeable, or has another patient with narcolepsy. She referred me back to my local psychotherapy service. It took another 3-4 months of waiting for an appointment. 2 years later, I have been forced to sort out many things on my own by trial and error and introspection. I am obviously grateful to finally had the opportunity to see someone who appears to understand my journey for therapy and shows a willingness to understand. My first assessment was exhausting but this time it was easier for me to express myself and be clearer and more honest with myself. I will see her again in October.

I really made an effort with this therapist – a lady in her late 40’s.  Worked really hard but got very little response. On my second appointment I spoke about Narcolepsy and spirituality, a topic that a have a strange relationship with… I will cover that later on. I explained the situation to the therapist whose face was soon covered with a judgemental feelings. I felt hurt that she did not understand that I felt accepted and understood by people that live close to spirit in all sorts of ways and yet was fearful. I tried on a few occasions to go back but I could’nt, the trust had been broken.

Written by Queen of Sleep

February 25, 2010 at 12:29 am

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