Elaine's Story

I have been asked if I would like to tell my story in relation to my eye sight, and how I access the services based at The Royal Society of the Blind in Sunderland. I hope you find it interesting and gain something from my experience.

I have Diabetic Retinopathy. I was first diagnosed with it at age 53. At this time, I lived in South Africa. The treatment was excellent, however, it was private care which cost me a substantial amount of money. In South Africa there is no NHS treatment or Social Services, so it is essential that you have money to pay for the care needed.

When I was first diagnosed I received treatment of a 'vast' which helps control the bleeding. This was followed by two laser treatments. I thought this would help, however, it soon emerged that I had cataracts. Therefore I required an operation to remove them. I then needed a gel substance replaced in my eyes. This is called a vitrectomy, however it can take up to two years for any improvements to become obvious.

When I lived in South Africa, I lived with my son and daughter. I felt my eye condition and other health problems had an impact on our home life. Just simple things like driving was very problematic, as I needed to rely on lifts from friends or my son. Of course there is no public transport, so if they couldn’t take me, I had no way of getting out for errands and shopping.

Each day I would wake up hoping things would be better. Unfortunately it never happened. The specialist never gave me the impression it would be a long term condition, so I always felt hopeful that my eyesight would improve.

As the months and years past bye, my eye condition became worse as my funds were running out. As a result, I decided to return to Britain. My mum and dad lives here, and I was born in Britain. I believed it would have a good support network and further treatment would be available.

When I returned I felt everything had changed. No place felt familiar. I didn’t no where I fitted in. I felt very lonely, lost, and had no confidence. In many ways it felt I moved to a foreign country. I registered with my GP whom my mum and dad was with, and I started receiving treatment from the Eye Infirmary.

The Eye Infirmary gave me three additional laser treatments and some magnification aids. The Eye Infirmary told me about things that I was entitled to, such as the blue car badge, and a bus pass. They registered me as severely visually impaired/ blind. I felt afraid by this, as I believed when you were blind that you could not see anything.

Following my registration I received a visit by the sensory team, they gave me a white stick. However, I have choose not to use it. I don’t want people to know I have an issue with my eye sight, and I also want to be treated the same as others. In some ways I feel embarrassed by how I look when I use the white stick.

The sensory team also offered me other aids, though I declined their offer to help me. Approximately one month later, Action For Blind contacted me. They filled in my disability living allowance forms. However, due to my circumstances I needed to live in the country for 52 weeks.

Over this time I was sent for a medical, and my confidence started to deteriorate. I wanted to gain friendships, independence, and a few qualifications, I also felt I needed some experience to help me gain work. Therefore I contacted Action For Blind, they told me about a computer course based at the city library. The librarian referred me to the IT mentoring scheme based at the, Sunderland Royal Society Of The Blind, based at Foyle Street.

When I arrived I was told about the society. They told me about the membership, and also gave me some leaflets.

A while later I requested to become a volunteer at the Society. I wanted to help in the office and felt this would help me meet new people and gain confidence whilst gaining experience that could one day lead onto a job opportunity. When my CRB form was complete, I started to help with the guide dogs, whilst the service users were bowling, and have packed shopping bags to help raise funds.

At times it is a balancing act between being a service user whom gets help with computers and being a volunteer. I believe the service has helped as it has given me social interaction and got me out of the house.

I have hopes and fears for the future. I hope to get more involved with the society, whilst still allowing myself time to gain experience and a qualification that would help me get back to work. My fears surround finance. What happens if something bad happens to my mum or dad. I also fear about further detraction with my eyes, as if they get worse I don’t know how I will cope.