Hi everyone I would first like to thank everyone for the amazing support it means a lot 🙂 I have now also created an Official Facebook page which you could check out the link is at the bottom of my page. Also a big thank you to my sister Amy who created my official logo and cover photo. for descriptions of them go on to my official Facebook page.
So today I am going to talk about my experiences with secondary school all of which are impossible to explain in one post.
Realising I Was Loosing My vision.
So i left primary school (junior school) and left with some decent grades behind me, I was still doing pretty well academically. It was time to start secondary school and yes it was a big change but I enjoyed it as I had a good peer group.
As a young kid I was quite a mischievous child and due to this I had to ‘leave’ my first secondary school.
I then went on to a private boarding school, this was a huge change as it was my first time living away from home and I had to make completely new friends.I was now doing well in my studies. I was enjoying my freedom. Living away from home at an early age gave me a lot of confidence.
I went through a faze where I would not wear my glasses, they weren’t working for me so what was the point? plus I never really liked wearing them, and I know a lot of people struggle with this issue, but as time went on I started to realise that my sight was getting worse and even if I did wear my glasses they made no difference at all.
I would get severe headaches which would sometimes last as long as a day, as my sight continued to deteriorate the headaches would last longer and occur more frequently. I also started to experience a sharp burning pain in my eyes, I found that the only way of relieving my self from this pain was by closing my eyes as it would help relieve some of the pain or by having a sleep. Amongst all the changes I experienced with my vision the ones that really stood out for me where:
1Black floaters – These are basically black blobs that appear at the centre of your vision. They distort your vision by starting to block bits of your central vision and can progress to block the majority of it
2Light sensitivity – This is when the lights look a lot brighter than usual because my eyes could not adjust to the light normally, due to this my eye would sometimes hurt because of the bright light.
3. Blurry Vision – I was unable to see anything clearly at a distance and I had to be at a closer range to see clearly. As a result of this I was unable to participate in practical activities such as football and basketball. This was really hard for me to come to terms with at the time. plus at this time I never knew why or how this was all happening.
I remember walking one day with my best mate in the dark as we were walking he noticed me tripping over curbs and bumping in to lamppost, he knew something was not right. My mate advised me to go and get my eyes checked out.
Anyone affected with any disability or illness will know how frustrating it is. I faced many days of uncertainty not knowing what was happening to the world around me. At this time I was in a whirlpool of emotion and confusion as I never knew what was happening and what or could happen next! As you can imagine this was quite overwhelming to deal with at the age of 13.
I went through a process of denial, refusing to accept my sight loss. At this point hiding my worries seemed like the best option. The last thing I wanted was to stand out or to be treated differently. I wanted to continue life as normal,hoping for the problem to go away.
As time went on I started to notice that lights were looking even more brighter and would distort my vision, I could not look at my phone or a computer for too long as it would cause severe eye strain and my headaches would start.
It got too a point where my headaches would occur more frequently and I found it hard to focus in lessons. Teachers thought I just did not want to work, I would constantly get told that my handwriting was messy. Well what do you expect I could barely see it. I would have my face right next to the page to read and the teachers would think I was being disrespectful and not wanting to learn. So eventually in mid 2010 I finally came out and asked my mum to arrange an appointment with the opticians. They did the usual can you read the letter on the board? and I could read up until the third – fourth line. there was also the test where you have to read the small writing on a card I could just about tell there was something on the card but i could not read it, I had not really known how bad my vision was getting until this point. The optician was unsure why my vision was getting worse at the rate it was. I remember there being an uncomfortable silence in the room I was eventually told that there was nothing anyone could do and i was then refereed to see a professional at the hospital. despite everyones reassurances I was still anxious about it all.
In fact, even throughout the few weeks waiting for the hospital appointment my sight was deteriorating. I could now not read normal print size anymore, I could not read my own handwriting let alone seeing where the lines were on a page. I was struggling quite a lot in school, usually I sat at the back of the class but now I could not see the board et all. however the teachers would have none of it at first thinking I was just messing about. They never really took it seriously. It got to a point where I would get my mates to read and write for me but still teachers thought I was either cheating or messing about. I kept getting in trouble and it was frustrating sometimes I just would not go in to my lessons, I became more rebellious about school. without a diagnosis I found it hard to justify my self to anyone, when I was still so confused. So I went to my first hospital appointment and they said my eyes looked fine, there was nothing obvious that they could find, bearing in mind they were still using the same basic tests. I mean what was the point of getting referred to see another doctor to do the same tests and chat the same rubbish!
I went with my mum for another appointment only to be told we had come on the wrong day. As we were about to leave a lady approached us and told us that she is a doctor, she asked me for my permission to trail a ‘new machine’ My Mum was all for it forgetting it was me being tested not her.Its not like I wanted to be used as a guinea pig haha! Anyway we went in and I saw this ‘new machine’ it looked like something out of star wars, it had a squarish body, with a small long thing and a chin rest (basically its hard to explain) I sat on a comfy chair ones I wish we had at school. and had to put my chin on the rest. The lady was like ‘I’m going to shine a little light in your eyes’, It was the brightest light ever, it was like someone shoving the sun in my eyes and after her burning my eyes through she said she thinks she can see a problem and would want to check with the ophthalmologist (A professional eye doctor). So this guy comes in and looks at my eyes.
I was told I had an eye condition called Keratoconus which is an eye condition in which the normally round domed shaped clear window of the eye otherwise known as the cornea progressively thins causing a cone shaped bulge to develop, the change of shape and thinning of the cornea and in some cases scarring of the cornea impairs the ability to focus properly causing poor vision. Professionals to this day are unsure why this occurs but they no its more common with people with Asthma and allergies, so i understand why I got it. It affects 1 out of 1000 people.
I still remember to this day the doctor looking up and smiling at me saying ‘don’t worry I promise you won’t go blind its nothing major’. on hearing this i was happy thinking I would still have my vision. I was referred to a contact lenses specialist who would then give me my first pair of contact lenses. my left eye was more worse than my right I found it exciting to have a pair of contact lenses no more spectacles!
At first I found my contact lenses helped a bit my making things less blurry, but not so much with the reading. My vision was still getting worse and after weeks my contact lenses were useless to me and I had to go back in for another appointment. This time I was told my sight was deteriorating at a fast rate and something needed to be done fast.
The doctor told me about an operation called Cross Linking which involves placing some vitamin drops in my eyes then shining a UV light for about half an hour in them the result is meant for the cornea to get stronger and hopefully freeze my vision where it was. The procedure was not funded by the NHS at the time and was roughly about £3000 per eye. My doctor said he would do his best to get this procedure funded for me. Again my mom signed for me to get both my eyes done at the same time even though I wanted one done but oh well haha!
A few months went by and I was stressing out as my sight kept on getting worse, I was trying to hide it as much as I could, but I couldn’t anymore it was too obvious as I was bumping into lampposts, falling over the pavements. I learnt the hard way that I could not ride my bike anymore, I was riding with my cousin and I could not see him properly in front and I hit his back tire and fell in the middle of the road. Hearing a loud horn beep from behind I turned around to see a truck driver shouting how much of a silly boy I was, I was lucky not to get hit I guess but at the time we found it quite funny not knowing it was going to be the last time I was to ride my bike. I could not recognise people’s faces anymore unless I was right up to them. I found it really hard to cope with this and as i never really told anyone how I was feeling, everyone assumed everything was okay.
I missed quite a lot of education in year 9 going in and out of hospital appointments and as now the school noticed my vision getting worse, they said they were not able to support me anymore and I was forced to leave. I left in mid year 9, now I had no eduction and my sight was still deteriorating as you can imagine it was very stressful. Finally in April I was told I was to have my operation on June 5th 2012 (Queens jubilee day) I felt over the moon that there was hope of sorting my vision out and stop it from getting worse, plus the doctor said I would not loose my vision so I felt like I had hope.
The day of my operation came and I was both excited full of hope and also nervous, I remember the doctor letting me play pac man on his phone as I waited and waited. It was time I handed the phone back to the doctor and walked in the operation room with my mum. They told me to lie on this bed and breath slowly through a mask, The surgeon said it would be over in a blink of an eye. I started to breathe in the aesthetic until eventually everything went quiet and my surroundings darkened, I was passed out.
Details of the aftermath of my operation will be available in the next instalment.
If you are or know someone who is loosing there vision and want support from other people in the same position as you then why not get inn touch with LOOK UK, which are an organisation who aim to help and support people with a visual impairment.You can also talk to other people in the same position as you!
contact LOOK-UK on
Facebook page: https://www.facebook.com/LOOKnational
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As requested by a few people I will soon be doing a Q&A so please send me in any questions you have. you can contact me on:
Official Facebook page; https://www.facebook.com/Livingthroughthelifeofibz/ Email; email@example.com