Monday, 7 August 2017

Memories - Amy

AmyIt can take a long time to get used to the changes in your sight. Not just for you, but for your family and friends. When your sight was once fairly good, it is hard to accept. In time you get used to it.

Your family and friends know how to help you and when you need help. You learn that it's always OK to ask for help and feel more confident about doing it.

Different people will move on at different paces, that's OK too. In time though, you will move on. Even though you have moved on, you still have the memories. In all of my dreams I can still see clearly. I sometimes have my white stick, I sometimes need help, but I can see clearly.

When I'm watching my favourite TV programmes and films I remember what the characters really look like, not what my eyes think they look like. This is hard if I am watching something new and I have to learn all of the characters for the first time.

In some ways the memories are good because they make certain things easier. In other ways the memories can be mean and make things disappointing.

A few days ago I decided to put on a DVD, remembering how the film looked when I was a child. When the film started, I looked at the screen and it looked nothing like it did in my head. It was an animated film, just bright colours moving around the screen. Occasionally I would notice a character's face. They weren't on the screen long enough for me to recognise them though.

I often wonder why I still watch these films, it just brings back the realisation of how bad my sight is, and how good it used to be. I could not concentrate on the rest of the film as it upset me too much. Instead I had a moan to a few of my good friends and tried to cheer myself up.

I sometimes wonder which is better, to be born with bad sight, or to have fairly good sight and lose it. It makes me wonder if you are born with bad sight, that you can't miss what you never had. But I would imagine that some will think "I would love to have just one day where I can see properly, just to experience it".

I do feel lucky for once having good sight. I also feel lucky that my sight isn't any worse than it is. I guess this is something there will never be one set answer to. It all depends on the individual person. And nobody will ever experience both sides of the story.

Since I have been volunteering at SRSB I have come to believe that sight doesn't have to be labelled. There doesn't have to be good sight and bad sight, everybody is just different. In the short time I have been here I have learnt that sight varies in many, many different ways and levels. Some people who have not experienced any sight problems seem to think that you are either blind or you can see. That is very far from the truth.

Memories can be hard, but they are what keep us all fighting for a better future.

Monday, 17 July 2017

Thank you Mappin Street - June

JuneMappin Street helps to fill my week
Wednesdays it's the choir, Fridays I get to speak
Wednesdays I enjoy singing many of the old songs
I used to sing in choirs and family singalongs
Fridays I write stories and rhymes it never ends
I started with poems for cards for family and friends
The subjects so varied, we all try our best
Sometimes we are serious but mostly they're in jest
The staff and helpers are priceless and help to make our day
So there's a pat on the back and hip hip hooray
So hope to see you all again quite soon
Love and best wishes from a grateful member June

Tuesday, 4 July 2017

Trust - Amy

AmyEverybody likes to have people around them who they can trust. People who they can trust to be loyal, respectful, caring, understanding. and somebody to keep all of your secrets!

When your sight is bad, there is a whole new level of trust needed. As well as all the usual things you need from a good friend, you need them to be your eyes. You need to trust without any doubt that your friends and family will keep you safe. If you don't, this can make things difficult and put you off going out with them.

Whether you are very dependent or independent, if your friends can see properly, your safety is in their hands. Your life is in their hands. This doesn't make them your carer, it just means they will see things that you wont.

Making new friends is always fun. Going out with new friends for the first time can be very scary. With your usual friends you start to develop a routine. Your friends know when you need help and when you don't. They know which side of you is the best to walk and how fast to walk. They learn the obstacles you will probably notice, and the ones you probably wont. With a new friend this is all brand new.

You also need to trust that your new friend wouldn't just leave you to find your own way home. Even if you had a disagreement, you need to trust your friend will see you onto your bus or into a taxi.

If anybody is reading this who has good sight, and has a friend with bad sight, please think about this. If your friend is always making excuses and doesn't want to go out, this could be why.

If you think your friend may not trust you, it is probably nothing personal, or anything you have done wrong. It is just a new level of trust that you both need to learn. Even with the closest friends, this can take time.

Luckily I have the world's most amazing and trustworthy friends.

Tuesday, 27 June 2017

Why macular disease really racks me off! - Graham

During Macular Week we wanted to post an article from someone with a macular condition - our thanks to Graham for sharing his story.

Since my mid-thirties I have known that I have Stargardt's, a form of macular disease. It has crept up on me since then, messing around with my jobs, my hobbies, my confidence, my ability to travel, do my day to day chores and even watch TV.

At 63 years old and now registered severely sight impaired, I no longer work and can't even shop for myself. Still, never mind. In spite of all this I am reasonably happy. Life IS ever changing for all of us. The Olympic champion of 30 years ago could still have perfect sight but be stuck in a wheelchair with a chronic arthritis issue and might be more than happy to swap conditions with me.

My Stargardt's doesn't hurt. I don't need uncomfortable treatment for it and other than another condition that limits what I can do physically, I don't have any complaints.

My main issue with the loss of central vision is the fact that I can never see the flippin' thing I am trying to look at! My side vision is reasonably OK and this is vital for general spatial awareness and navigation with the aid of a long cane but WHAT DOES THAT FLIPPIN' WARNING BOX SAY THAT HAS JUST POPPED UP IN THE MIDDLE OF MY SCREEN??

The NVDA screen reader I use on my PC is pretty good but unfortunately it can't read warnings. That is an illustration of the general kind of frustration someone with macular disease has to put up with every minute of every day.

I can 'wobble' my eyes around as much as I like but I can't see the bit I am looking at and never will again. I have tried to train my concentration to think about what is at the side of the grey hole but in spite of some success with big bold text, this is very tedious and I have lost interest.

The answer? Think outside the box... talking magazines, newspapers and books mean that with a bit of help initially, you can keep in touch with written media and with the right easy-to-use radio, tablet and smartphone, you don't actually need to read text any more.

Over the years I have found help and advice from staff and volunteers at SRSB.

Not all this stuff will suit you. For example, I can only use a smartphone for taking and making calls, listening to text messages I receive and listening to my emails plus listening to music and the radio, and that's it. For me, that's a result.

Talking books and magazines however are dead easy to get to grips with as the readers are designed to be easy to use. Modern TVs also have optional audio description for many programs and your scales will tell you if you have eaten too much rich food!

So in conclusion, yes, macular disease is a pain in the **** but if you attack it using technology and a positive attitude you will find it isn't the end of the world.


Thursday, 22 June 2017

A Day in the Country - Dave

This blog contribution is a fictional story from Dave, who is sighted, but his daughter Amy is visually impaired, so he wanted to imagine a day in the country from his daughter’s perspective – thank you Dave!

Me and my friend we like to go walking, usually at the weekend and we always manage to get somewhere at some time that feels special to us. As long as it is out of town, away from the hustle and bustle of city centre life with the hundreds of people getting in your way and then the noise from all the cars and vans and buses and roaring motorbikes. As long as it is out of town anywhere is fine by us.

Across the moors, through the woods, along public right of ways at the side of fields, over streams with the sun on our faces and the gentle sound of water trickling over the rocks and stones of the river bed that have been in place for goodness knows how many hundreds of years, oh yes, out of town always.

So, on the day for our next walking adventure we had our backpacks ready with emergency rations of food and emergency rations of high energy drink and of course, Pepsi Cola. Well, it is thirsty work all this walking. We are always well prepared with all weather clothing - t-shirts for when the sun is out and rain macs for when the weather forecasters have got it wrong again, and always one piece of really warm and snug clothing should the temperature suddenly drop to near freezing, or any time the sun goes behind a cloud in my friend's case!

The last thing to do before setting off is to tie up my hiking boots, yes, we are going hiking, even though my friend calls it walking. We got to our starting point by bus, my friend's dad normally drops us off at our chosen spot in his nice car but on this day even though it's a weekend, my friend said her dad had a very important meeting to attend which my friend said is usually a thirty minute meeting to decide what to talk about at Monday's meeting and then four hours on the golf course before retiring to the bar for a pint and a bite to eat. Sure is tough being Chief Executive of a company.

We soon found ourselves deep in the woods following a well-used path and we talked and talked until we were breathless about pop music and world affairs and pop music, yep, we are pretty well clued up on which pop star is the latest hot star.

I heard girls giggling and feet pounding, coming towards us, a group out jogging, and I felt like saying, slow down, you go too fast, to get somewhere quick you miss half the fun of getting there, you miss listening to the birds singing in the tree tops and hearing the heather rustling in the breeze.

We found the stream, and lay down for a rest on the soft grass and it is so quiet and so very peaceful as we ponder life. How many people rush through each day? When they say "how are you" do they hear your reply? Have they ever lost touch, let a good friendship die, because they never had time to call and say "hi"? Hear the music before the song is over?

Then we are back home, my friend makes me a nice refreshing mug of warm chocolate and finds a little piece of cake to go with it. Me, I take off my hiking boots, stretch and sit back and fold up my stick, for I am blind.

Enjoyment is out there, it just needs finding.

Thank you for reading my story.

Monday, 12 June 2017

What I got from the Optimeyes Project - Mike

MikeOptimeyes was a two year project running from April 2015 to the end of March 2017 and its objectives were to: 

  • identify people over 50 who are at risk of developing, or who are living with sight loss
  • support older people living with sight loss and in need of help, and link them in with their local sight loss organisations to help them access the required support
  • prevent isolation and encouraging independence
  • raise awareness of the importance of eye health and regular eye health and sight checks

Optimeyes, a good play on the word 'Optimise' which means to make something as good as possible, for example, we need to optimise our use of existing technology.

On a personal basis, Optimeyes has changed my lifestyle considerably. Following two strokes and a heart attack, I was certified visually impaired in both eyes. I was seeing visions and was convinced that I was suffering with dementia.

I became housebound for three months, not mentioning that I was convinced I suffered from dementia to anyone, not to my wife, my two sons, my doctor or my Neuro-opthalmology Consultant.

Then my life change came. I was put into contact with SRSB and received a visit from Joanne, a Community Advice Officer, who mentioned that some VIPs (Visually Impaired People) experience visions called CBS (Charles Bonnet Syndrome) and that there was a support group at SRSB. I joined the group and for the last two years I have produced a monthly CBS poem for them.

I also belong to the Creative Writing Group. It was at the Writing Group that I met Liz Bowman who had just started as Mobile Information Officer. Liz also became a project worker for Optimeyes. I immediately offered to become a volunteer with that unit, and also Optimeyes, and was accepted.

Later, Liz became Community Engagement Officer which included work for the Optimeyes project. I assisted her with VIA (Visual Impairment Awareness) training sessions, eye health talks, etc.

All these tasks led to me campaigning to raise awareness of CBS through outreach events, online research, joining focus groups at SRSB and RNIB Action Group and potentially becoming involved at a national level with Esme's Umbrella and with the RNIB Action Group.

I have taken part in focus groups and a research project called 'Improving detection and support for older people with sight loss' at The University of Sheffield.

I thank Liz Bowman at SRSB who gave me an opportunity to attend an Action for Sight Loss six week course run by Action for Blind People held in Rotherham. Liz also arranged a two day residential course Confidence Building Volunteer Peer Facilitation at York funded through the Optimeyes Project and a ten week WEA 'Skills for Volunteering' course based at Voluntary Action Sheffield.

Now I want you to think of an electric plug, it has three prongs. Earth, you can go to earth. Negative you can take the negative way, or Positive, and I chose the positive way.

Positive thinking is more than just a tagline. It changes the way we behave. I firmly believe that when I am positive, it not only makes me better, but it also makes those around me better. There is a new tomorrow - and life still has meaning. I am optimised. Thank you for reading!

About Charles Bonnet Syndrome
A note from SRSB

Charles Bonnet Syndrome (CBS) or ‘Phantom Visions’ as the syndrome is often called, can be a very worrying side effect of sight loss, where the brain tries to compensate for not seeing by creating visual hallucinations or sees things which are not really there.

They may be simple images such as grids and patterns, or elaborate, complex images of objects including animals, people or landscapes.

 Charles Bonnet hallucinations are not a sign of dementia or any other sort of mental illness. They are a normal response of the brain to the loss of vision.

Friday, 2 June 2017

Positivity - Carol

CarolIf there is time for mending
Time to see your troubles coming to an ending

Life is never hopeless however great your sorrow
If you are looking forward to a new tomorrow

If there is time for wishing then there is time for hoping
When through doubt and darkness you are blindly groping

Though the heart be heavy and hurt you may be feeling
If there is time for praying there is time for healing

So if through your window there is a new day breaking
Thank God for the promise, though mind and soul be aching

If with harvest over there is grain enough for gleaning
There is a new tomorrow and life still has meaning