I am a music teacher and even though I only work part time (.6) I am really really struggling. In part, it seems that lots of my colleagues (non narcoleptics) are suffering from exhaustion, low morale and poor health because of the crazy situation education is in (i.e the systematic attack on comprehensive education and teachers working conditions). For me the price is becoming too high - my heart sunk as I walked from the tube in to work and I forced back tears. Sometimes At work I look off in to the distance fighting back tears as I am so tired, unhappy and unwell. I have to sleep in the toilets which is undignified. I was so so so tired after my half day of work that I was in bed with a migraine from the rest of Monday and all of today (my day off). My body and health is so destroyed by trying to keep the job - I am ill with infections all the time, my muscles ache and I get migraines. I get terrible periods which can incapacitate me. I have developed chronic laryngitis and have put on lots of weight. I am so so so so depressed, I cant recognise myself. When I look in the mirror I see a pale and broken shell. I just work and sleep. All the time I am not working I sleep / rest, with a sense of dread in my gut counting the moments when I have to drag myself to work. The tragedy is I am a brilliant music teacher - I love music and I love working with young people!! It us just the way the job is structured, on top of the constant bullying and increasing workload (and dont mention reasonable adjustments because pigs might fly! ). I have lots of friends but am very rarely well enough to see them - and they try to understand but they dont really get it...I try to get support from my GP but last consultation my GP declared I know nothing about narcolepsy. On previous occasions, I have been told to be positive and try to walk an extra ten minutes a day!!! There is this resistance to refer me to regarding all my ailments which may be small in and of themselves but, alongside narcolepsy, make my life unbearable. They seem unable to deal with me as a whole NARCOLEPTIC person - everything has to be seen through this prism! On the otherhand my narcoleptic specialist just treats the narcolepsy and nothing else - but it is all connected! When I have a rest (i.e the holidays), I slowly see parts of myself coming back to life. I feel so isolated because very few people around me understand narcolepsy and I feel socially punished for the condition through this misunderstanding. I am naturally a very social person but because I am so ill, I hardly see anyone of my friends. I have to watch from afar at the whole world getting on with their lives (just small things like partying or cinema to bigger stuff like developing their careers, having children etc...), as I have to literally pick myself up over and over again - parts of me dying inside as piece by piece my life is taken away from me. And I work so so hard. I always have. I have had to have no dignity - take the jokes and pick myself up from the stinking toilet floor after a nap. I have to reinvent myself each time an obstacle takes another opportunity from me or yet another thing that most people take for granted is denied to me. I reach for life each time, even when life tramples me down. I have become increasingly incapacitated so I created my online musical persona in iRate. But I just am hopeless and cant see how things can be changed. I am so tired of struggling every minute of every day. And I know things could be worse and I definitely know of all the tragic victims of this brutal system but it doesnt make me feel better to think of them, just worse. And I know, I am not meant to say any of these things in public - that it is just not done or self indulgent because the world is in crisis. But I just feel so downtrodden and with all these feelings that even my music cant distract / lift me today. I just need to speak.
Posted on: Tue, 06 Jan 2015 18:58:15 +0000
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