Thank you to you all for the amazing support I have been getting on my blog site and on social media.
Sorry for the long wait but I had been so busy at college with it being the last term and I was keeping up with my deadlines. Managed to push through it though! Hope your all having a good summer break:)
Today I will continue on my story of loosing my vision and what happened after my operation.
So after my operation my light sensitivity had gotten a lot worse, i could barely open my eyes and was in quite a lot of pain. I was told from the hospital that this was all normal and should disappear within a week or 2 weeks max. so the first week went by and the pain had started to ease but my vision seemed to have gotten worse as the bright lights were effecting my vision, imagine walking outside on a bright sunny day when the light hits you and you have that blurry bright light for a few seconds its like that constantly. This is why I sometimes wear dark shades, it’s to ease my eyes from the light.
Weeks went by and my vision had only gotten worse which my doctor could not explain, this became very stressful for me over time as I was assured my sight should not deteriorate.
I felt like I was in a very closed environment not knowing who to talk to. not being in any education also just made matters worse.
Myself and my family knew that I was taking too much time of education so we started looking for schools that supported individual with sight loss, we found that there were not many, we were not having much luck and with council not helping much it was tough.
Finally after weeks I had a visit from Birmingham City council and they suggested 2 schools one which was a mainstream with a VI bit and the other a specialist school for the bind and partially sighted. Even though I had been in mainstream education throughout my life I found it daunting at the time to go to a mainstream school thinking I would be treated different, I had already noticed family and friends treating me different due to my sight loss and if I must admit it made me feel very self-conscious and being treated well ‘not normal’ becomes very annoying and makes you start to feel a sense of anger inside overtime.
well we went on to visit the specialist school and it was a very different experience, never seen classes so small with only a maximum of 8 in a class compared to 30 plus in mainstream. but the support and technology they had was amazing and just the right thing for me. I never really wanted to go their first because I did not want to be different but after a few weeks I decided it would be a better decision and if I wanted to achieve the education I wanted then the specialist school would be the best place. after all they were offering me to learn to read and use a PC again which I thought I would not have been able to do.
So I started the school in late 2012 just before Christmas, at the start I was worried I would not make friends as easily but being with people in the same position even people who had been blind since birth was a motivation for me that things were not as bad as they seemed.
I was taught braille which was hard but being able to read again even though in a completely different way with sense of touch instead of sight was truly amazing. also being able to use a PC again with the use of a high-end speech software which did not take me too long to get grips of was also an amazing feeling, I felt like even though I was going blind I still had hope in living a normal life just like I used too. things were going well and I felt like I was moving on.
I was only to realise that this was only the beginning and everything was going to get a lot worse.
It started of slowly, gradually the support I was receiving at the school was not the same. At first I just thought I got extra support due to me being a new student but totally removing my IT support lessons after only being there for a month I had barely learnt the basics, then my braille lessons were slowly being taken of and the general support I was receiving was going down. I spoke to my friends at first who said it was very weird and could not explain this weird behaviour.
Teachers were removing my assistive tech from me and forcing me to read print which I could not see, not giving me the choice to use my specialised equipment this was very hard, I was made to read size 72 print on paper and even that put strain on my eyes, I would go home very tired, angry and my eyes were in such pain I cannot describe.
I decided to talk to my family who were also angry and upset about what I had told them, this was unacceptable behaviour from a school of such standard. Many of these occasions happened at the school and I was continued to be mistreated by the school throughout the year. When I had first applied to the school I was already behind in my academic studies as for the events that took place prior (loosing my sight, and the operation) so I decided to go back a year but this year was too wasted as I was not given the efficient support so now I was roughly 2 years behind.
I do not wish to go into much detail regarding my issues.
It made my time getting through sightless even harder. My sight was still deteriorating and I had not much support at all so we had to look else where.
My Mum got in touch with an organisation that supports individuals who are blind/partially sighted and we met with two people. Once we told them my story they were angry and said something had to be done and were willing to support me through the entire process. firstly I needed a diagnosis and by this time I had been through enough and was tired of everything, my mind was full of confusion all I wanted was answers. we had many trips to the hospital but they too were not very supportive just doing basic eye examinations and not being able to see a problem with my vision and this just made the stress load even heavier.
Through the organisation I was given counselling by one of the members that was supporting me and it was good to be able to talk to someone from outside and explain about the way I was feeling and how all the events were effecting me, overtime it helped but having no answers was always playing on my mind and everyone knew that it was about time we got some!
After a few meetings we had come to a conclusion that it was time to seek support from outside and a secondary diagnosis was one of the options, me thinking there is nothing to lose, I took the option and hoped for the best.
My second diagnosis was to be in London at one of the greatest hospitals for young people in the UK Great Ormond street hospital an appointment was made. After all the good things I heard about the hospital it gave me a sense of hope, but having been through all this before I never set my hopes too high. not knowing things were about to change.
So my the day came and we had packed our bags for a 3 hour train journey to London, this was not only an exciting time for myself but it was the first time that my two younger sisters had come to London. I was nervous but also had a little bit of hope that maybe they might find the cause of my blindness. we had our support from the Blind Children Society with us too and she knew a support worker at the hospital.
we had arrived In London, I felt a buzzing feeling that similar to a sense of adrenaline because this was one of the best children’s hospitals but I also was scared that they would not find the cause as I had been through many tests already.
I was told the hospital was huge and that it was, as I can remember it sounded pretty busy.
I can still remember the feeling I had as I waited there slightly scared and slightly excited, I was called up to see the support worker Paula who welcomed us very well, she was blind herself and could understand everything that I was going through, she provided me with all the support I needed.
At first I had the basic how many fingers am I holding up test, I could only just about see her hand. I was told I was going to be having another test called an electro diagnostic examination, which basically is when they stick some electro stickers on your face and you sit and watch a movie or a TV screen and the test checks for many signals from your eye to the brain. As I sat there with all this equipment on me I felt like something out of a sci-fi movie haha.
I was called in by the doctor within 20 mins, I was nervous but something told me that it could be some good news.
After years and years of struggling to find out what was wrong with my vision and being through everything that I had within a few hours here they were able to tell me that I had some sort of retinal dystrophy, everyone was in shock that the hospitals in Birmingham based their views of some simple examinations, but although I was told there was nothing they could do to restore my vision I was at least glad I knew what was behind my sight loss, I could now breathe.
I had a few more appointments at Great Ormond street and they did some more tests the overall results were that they are not 100% sure why y vision went so drastically but know that I do have something wrong with my dystrophy but there are many eye conditions out there, and I just know I have some sort of retinal dystrophy. I would like to thank all the support I had from Great Ormand Street and from the British Blind community because they helped me pull through and get the results I wanted.
So once I had left my old school I went to a mainstream school which had the right support for me and at first it was a bit daunting but I settled in pretty quickly and made some good friends, i had managed to put my head down and complete my GCSE’s and came out with better results than I had expected which was great, and from now on things where getting better for me. After time I began to adjust with my sight loss and carry on with life.
I chose to go to The royal national college for the blind (RNC) as it is a place where I could carry on with my academic studies but also learn the skills I needed to become the person I am today, the college has helped to gain nee skills and reach over my expectations of how independent I am. I can honestly say i made the best decision going there, made some amazing friends and met some incredible people a long the way, I have learnt quite a lot and thank the college for giving me such an opportunity.
When I was first told that at the there was nothing out there to restore my vision or make it any better, I was upset/angry about it, the reason for being angry was due to the frustrations that had built up inside of me. I never really had someone to talk to apart from my friends who I barely told anything really to them, But a few of my friends I was quite close to and once I opened up and started to talk to them about anything I was going through I felt much better. I personally believe that you need all round support to help you get through a situation whether it be loosing your sight or even something like breaking your arm, Once you have found the people/person you can trust try talking to them it will help. Another step that helped and still helps me immensely now is health and fitness, keeping on top of my health and fitness from keeping a clean healthy diet to going to the gym regularly and playing a part in sports has all helped me in many ways and this change of lifestyle is what I will be speaking about in my future posts.
and again thank you all for the support it be a huge help and mean a lot if you could give the post a like and share it with others.
you can also follow me on any of my social medias to keep up to date with the progress of my blog. Click the links below to follow me and you can message me any questions or feedback would be great too!
Facebook page; Living Through The Life Of Ibz