The problem child

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I have suffered with the symptoms of Narcolepsy since around the age of 8 years old. 

At the same time my mother was recovering from a serious brain injury and my father left us which meant my symptoms were put down to attention seeking and i was basically branded a "problem child" by school, Drs and family and freinds. My biggest problem was getting up on a morning for school i would lay awake most of the night then by the time the alarm went off i was only getting around 2 hours sleep which made getting up impossible.

School social workers got involved and my mother was threatened with court action if she couldnt make me attend school she could face jail! This ofcourse caused a huge strain on my mother who was still recovering whilst trying to raise 4 children and facing repossession of our home since my Dad was the bread winner and had totally disappeared. My mam grew more and more frustrated with me and to make things worse i started suffering with random pain and dislocations of my knees which meant more time off school tho they did send a temporary home tutor which was great but she would only come between 8.30 & 10 am which meant by the time i was awake enough to study she was ready to leave. Things became very bad between my mam and i she sent me away to stay with various family members in an attempt to sort me out this meant no school at all and i became house maid and nanny for my uncle eventually my Nanna took me to live with her and although still no school this was the best part of my childhood my Nanna was understanding and saw past my issues we had the best times together untill she past away when i was 16.

I continued to struggle through life tho with no education it wasnt easy i was lucky enough to work several jobs get married and have 2 children tho still struggleing with sleep pain and dislocations life was going great untill i hit 23 and the pain got unbarable dislocations started in other joints along with swelling and fatigue it became impossible to get out of bed some days and i started to fall over a lot aswell as fall asleep in some really strange places and situations.

At 25 i was diagnosed with joint hypermobility syndrome/EDS type 3 which is a connective tissue disorder too complicated to explain in full but basically my joints dont stay were they should and dislocate daily causing damage to the tendens and muscles and more or less affects every part of my body. It was my rheumatologist who first questioned my excessive sleepiness and sent me to a sleep specialist were last year at 29 i was diagnosed with Narcolepsy. Since then i have started on modifenal and melatonin at night i take heavy pain killers for my other illness which doesnt help my tiredness so im hoping in time i can find a happy medium between the two tho i know its going to be a long and frustrating battle im glad i finally have answers and am no longer seen as lazy. My relationship with my mam is better than ever i dont blame her for any of the problems we had she was ill herself and put her trust in the professionals who badly let us both down i cant help but feel robbed of my education if i had been diagnosed sooner i would of been given help with schooling i was doing well at school i was never in trouble always eager to learn i wanted to be a vet i know i cant change things now but i do wonder how many other lives have or will be ruined because of the lack of knowledge surrounding this illness 21 years for a diagnosis in this age of medical research is ridiculous if it wasnt for my EDS i wouldnt have gotten my diagnosis and would still be struggling and blaming myself for everything although id prefer to not have Narcolepsy i feel releived to finally have answers and am looking forward to working with my neurologist to hopefuly find the right treatment for me so that i can get on and live as full a life as possible for my children my hubby and myself.    

Thank you for taking the time to read my story so far. Xxx