Who am I?

I was born 20 years ago, a normal healthy child, in Chesire, Manchester. I contracted a rare illness called Langerhans Cell Histiocytosis; or LCH for short at the age of three years old, which consequently left me with DI or Diabetes Insipidus. DI is the lack of the hormone ADH, which causes an overwhelming need to drink and pee. However it could be treated by medication, and it was the only repercussion I acquired from LCH at this time.

A person can often hide health problems; whether bi-polar or depression, or in my case; DI. Their illness is not on show for the whole world to judge you upon. My family moved to Dublin, Ireland when I was six. I was 13 when my life as I knew it came to an end. I was just finished my first year in secondary school. I developed a minor limp; nothing too drastic, or to worry about. I had an MRI (xray) of my brain, to which no abnormality was found. As the years went by, I continued to degenerate. By age 14 I needed the support of crutches when walking; by age 15, I needed the support of sombody’s arm. By age 16 I needed a new mode of transport, and by 18, due to outside pressures (my college principal), I was given the ultimatum of turning to alternative mobility or no more college.

At the age of 16/17 I had an annual MRI scan; in which to find the LCH disease I had contracted at three years old had returned; this time, infecting my cerebellum (part of the brain which controls mobility skills and coordination)

Living in Dublin, Ireland at this time prooved a HUGE disadvantage for my illness. As the population is so small, it meant very few doctors had heard of Langerhans Cell Histiocytosis, let alone specialise in the disease.

Today I continue my everyday life (with a few extra challenges) without any treatment for my disease. Dealing with a life full of doctors, bad news, antagonised change and early mornings. I still manage to keep a smile on my face; trying to remain positive, never complaining about my personal problems. From having to change my career path, my lifestyle, my friends; all because of the condition in which I talk about in my blog. How I adapt to the changes, deal with these obstacles and cope with the transition from a normal life, to plain hell. I am highly influenced by music, hence the music all over my page 😛

My name is Nellie, join me on my journey, in which I still travel to this day…

“live your life to the fullest, because tomorrow you could wake up and your life could be completely different” – guy in 30 Seconds to Mars music video

Please answer my poll to give me an insight into what attributes you would perceive acceptable for a wheelchair user

 

3 thoughts on “Who am I?

  1. Hi Nellie. I met you in St Stephen’s green last week. We were at a meetup: New & not so new in Dublin. You blog is I spirational to me. I take care of people who have physical disabilities and it is amazing to see and understand there perspective about life.

    1. Hi Victor, I do remember you. I’m glad you like my blog and I’m glad you find it inspirational. I don’t like the word disability as I feel it automatically stigmatises someone as incapable and holds a person back from reaching their full potential. I prefer the word impairment or injury

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