Everyone has perceptions of how i live my life how i deal with things and my abilities, but no one knows until now!
I grow up in a isolated world my parents at the time treated me as special and someone that wasn’t going to live more than a few months i was born at Leicester Royal Infirmary on the 16th July 1974 with small lungs and reduced heart function and was taken to surgery within hours to correct this, at that time correctional surgery was new and in its early stages with a success rate of 1 in a million i was that 1 in a million never needed intervention again.
but things weren’t that simple from then on i was tranfered by police escort to the world renowed Great Ormand Street Hospital in London who where the specialists in Lung Diseases in infants, a doctor there diagnosed me to have Chronic Bronchitis
It causes a cough that often brings up mucus. It can also cause shortness of breath, wheezing, a low fever, and chest tightness. There are two main types of bronchitis: acute and chronic. Chronic bronchitis is one type of COPD (chronic obstructive pulmonary disease). The inflamed bronchial tubes produce a lot of mucus.
& Severe Asthma
Acute severe asthma is an acute exacerbation of asthma that does not respond to standard treatments of bronchodilators (inhalers) and corticosteroids.
From that point my treatment started a life of powerful medication and a lifetime of sometimes painful side effects all with one goal to keep me alive and able to become a part of society in a fashion. still under the guidance of the Doctors of Great Ormand Street i was transferred back to my Local Hospital where my care continued and life’s challenges continued.
My childhood wasn’t a normal one i wasn’t allowed to mix with other children in the summer when my brother was out having fun i was kept in receiving treatment from four hourly nebulisers to 100 mg Prednisolone steroids twice a day. No time to play or learn just sleep and treat up until the age of 5 years.
Time to go school which was a challenge in itself i’d never been around other children i wasn’t able to interact it was so difficult! At the time the only specialist school in the area was located about half a mile from my home situated in one of leicesters most prominent parks. Western park open air school taking its name from the park it was located within.
A specialist medical lead school for children with complex and life limiting disease with a specialization in respiratory related diseases.
This school was like a mini hospital consisting of a highly trained paediatric intensive care senior sister. A professor in childrens respiratory and as well as a team of speech therapists, physiotherapist, and occupational therapists on duty from 8am til 4pm every school day. A hidden hospital in a park!!
But a lifesaver to the 250 pupils that attended each day. We can’t forget the 26 special needs teachers that were a integral park of the functions of this school environment.
I remember receiving my daily treatment while sitting in class learning to read and write like all the other children and no one batted an eyelid. Sleeping every break time and learning the rest of the time. Going home via specialist transport back to the routine of home life. Family would keep their distance and my brother would be out enjoying his self almost all the time. School life wasn’t always easy at an early age i found it difficult to learn i struggled with my reading as my words would always seem to be jumbled up and this meants i struggled to read simple text, but over time i gained enough skills to be able to interprit words and work out what they were. as i gained in age my disease gained in severity meaning regular stays in hospital for intense treatment to clear infections and make my disease stable my this also meant time off school and more time alone a life i had slowly gotten used to.
On returning to school i quickly gained speed and was able to learn more and gain some life long friendships as i said life wasn’t always easy the nature of the school i attended meant that many of my friends had far more serious diseases and conditions than me. And some had physical handicapped as well as life limiting conditions as at a early age i was confronted with death in its rawest form and was unable to relate to what i had seen.
As older pupils life didn’t change that much we participated in all the educational requirements like any other mainstream pupils did the only difference is that more time was taken and consideration for our medical conditions, however my respiratory diseases where still there and my life out of school was much the same as it was when i was much longer.
People i meet these days have problems understanding why my social skills aren’t that great, i hate joining in with things and have hobbies that i can do on my own without the need for other to be around. My friends from school have gone their separate ways or lost their battles with their health conditions its a sad part of life i’m a custom to and aware that my fate is set to come soon to my health isn’t getting any better.
Everyday tasks for me are challenging and sometimes a struggle but i have learnt to keep quiet and just do my best, i injury myself on a regular bases, the doctors at Great Ormand Street where right that the side effects from many of the drugs i take would sooner or later see me have more serious side effects. My most challenging one being Osteoporosis which is sometimes associated with prolonged and high doses of steroid medication.
many people i meet these days are sceptical about me they think i have no skills or knowledge and don’t know what i’m talking about, i grow up in a special school around disability and medical conditions that are so rare you may never see them again in any lifetime.
I am capable of supporting wheelchair users, i don’t get embarrassed easily as while at our school nothing was ever hidden i become the point of most jokes amongst female students when i was studying for my IT degree, i was dared to do a lot of things but i wouldn’t many were rude and possibly pleasurable for them but embarrassing for me as i wasn’t and still are that into those types of things.
All i ever wanted was to find someone to love me and help me take care of myself, i like to treat people how i would like to be treated, i’m extremely sarcastic and very caring i don’t deal well with people who feel it necessary to pick on my fellow friends with disabilities you must learn the hard way if you do something in front of me.
I have skills which many don’t know about and i will not disclose them unless i’m asked most will think i know nothing and i’m happy for them to believe this i however feel sometimes that my skills can help others and unfortunately i’m not given the chance to prove this because of others perceptions of me.
Ask before you assume!