The guide cane - Amy

When your sight has got worse, realising you need to use a cane is very daunting and upsetting. For years everybody was saying I should use a cane, but because I'm me and I'm stubborn I wasn't having any of it. I didn't need it, it wasn't going to make my sight any better. Everybody was making it out to be this magic wand that would magically make everything better. It wasn't, it was a stick! What could a stick do to help me?

The days turned to weeks, the weeks turned to months and the months turned to years and I was still clinging on to my Mum or Dad for dear life every time we went out. I felt silly but it was the only way I felt safe.

In the Christmas of 2015 I was out Christmas shopping with my Mum and Dad. I was completely drained and we were all stood in a card shop, trying to look at cards, wrapping paper and all the usual things. I could not move for all of the people. We'd had a long day of shopping and I had just had enough. I kept trying to move out of somebody's way and I would end up in somebody else's way. I just stood still in a complete strop because everybody was getting in my way as well. I thought to myself, if only I had a white stick on me now, maybe everybody would give me a bit more space. It wouldn't stop the chaos of Christmas, but it might help.

It was the first time I had actually wanted one, before then I used to cringe at the thought of it. In the following weeks I realised that now was my time, I needed to make that call to Carolyn, my Community Advice Officer at SRSB, for her to refer me for cane training. It was my goal for the new year. Some time in that year I had to make a start.

In June my training started and I met Karen, my Rehabilitation Officer, for the first time. Karen is lovely, friendly, chatty and made me feel completely relaxed. Until I met "the stick". I despised the stick, it was the symbol of how my life had got worse. It made me look different and it would attract attention. Attention that I didn't want, I just wanted to be left alone to blend into the crowd. There was no blending in with that thing. Every time I looked at it I gave it daggers.

I had heard stories of how the cane becomes your new best friend. There was no way that thing was going to do me any good, it would just make me look and feel ridiculous! I call it a stick instead of a cane because that's all it is, A STICK!!! The word cane gives it more respect in a way, it makes it sound like it has a purpose, like it can actually do something.

I knew this thing had to be done, so I just went along with it. My first time out with it was up to the local shops. It is only a two minute walk away, just at the top of my road. There weren't many people around that day, but it felt like everybody on my road was stood by their windows, watching me. I walked really slowly because for the first time in year I wasn't being pulled along by anybody. It was just Karen walking at the side of me, me and the stick.

When we got to the shops Karen helped me to find some potatoes as my Mum wanted them for tea. When we got back home, I was proud of myself, but still not happy, and I was glad to be home. The stick was stood up in the corner, looking at me. I needed to do something about this, I needed to do something to get myself used to having it around. Which also meant other people getting used to having it around.

So I put a photo of it on Facebook and I decided to give it a name. If it was going to be an unwanted member of the family it needed a name. I asked my friends and they had plenty of good ideas. I narrowed it down to three of their suggestions and I got them to vote for their favourite. This went on for about a week and friends were commenting telling me to hurry up with the results because they had been waiting all day. Everybody seemed hooked and glued to their screens, all to find out the name of A STICK! I have some strange friends. Love them for it though.

So after the votes had been counted and verified, the name of the stick was... SETH!

On my next session with Karen I introduced her to Seth and told her the story. I still couldn't stand him but at least everybody had been introduced to him. They could have voted for the names I actually liked though, Stella or Sylvie. But the people chose, and the people chose Seth. I had to find a way of making fun of the situation and as strange is it is, this was my way. And it did help, in a way.

My aim was to be able to get to my friend's house on my own. She lives two buses away and it was costing me around eight pounds each way in a taxi. The first step was to go into town on the bus with Karen and back again. The next week I went into town on the bus with Karen and then came home on my own. There was no rush or pressure, she just knew I could do it. It was a confidence thing rather than the fact that I couldn't do it.

The next week I went into town on my own, met Karen and then came back on my own. I was nervous but it was fairly easy. I knew where I was and where I was going. I had done that same journey the majority of my life. I just needed to get used to being around strangers and asking for and accepting help when I needed it.

The next step was OK to start with. I went into town on my own and got the bus to my friend's with Karen. We were busy talking and I wasn't really concentrating on where I was going, but it gave me a feel of the journey and the length of time I would be on the bus. It wasn't a complete waste.

Every time Karen encouraged me to ask the driver which bus number it was and ask them to tell me when I get to my stop. Even if I already knew, she encouraged me to ask to get me used to asking for help and to make sure I definitely was getting on the right bus.

The next few times we did the same thing again. I was finding the last step really hard, getting off at the right stop on South Road. For anybody who doesn't know, South Road is a very long, busy, scary main road. There are lots of little shops that all look the same. Buses sometimes go quite fast on there so it is very easy to miss something that you are looking out for.

One day I got a very helpful bus driver. He saw that I was trying to learn the route and he took the time to explain to me what the road was like and a few things to look out for just before my stop. He was so helpful and gave me the final push to do it alone.

The next week Karen was waiting for me at Walkley. I had to get there all by myself. I was a nervous wreck but over the weeks Karen had helped me learn to ignore that and just concentrate on what is happening now. I was so busy worrying about what might happen later on in the journey, which usually didn't happen. She helped me to concentrate on the moment and what I was doing at that time. Taking the journey one step at a time. I learnt to not even think about the next stage of the journey until it was happening. When I got the hang of it, it did make things a lot easier. Didn't stop me being nervous, I just learnt to control it.

Eventually I got to my friend's bus stop all by myself! I was so happy because I knew the journey back wouldn't be a problem. I was going to familiar places, the bus station and then home. I didn't even need to look for a bus into town because Karen did that and my friends always see me on the bus anyway. So at last the hardest bit was done!

Karen always told me to believe in myself more because she wasn't really doing anything, she was just with me. She was right really, it is just so scary making that first step and going out alone for the first time.

For a few weeks after that my friend invited me over to give me more practice of the route. She met me at the bus stop just as Karen did. Eventually I felt confident enough for her to not meet me at the bus stop.

Karen told me to get in touch when I wanted to learn another new route, but for now, my training was done.

Over a year has passed now since I finished my training and I am more confident. Still not confident enough to go to new places on my own, and some days I don't feel very confident at all, but in general I am a lot more confident and feel able to get around without clinging on to somebody all of the time. I often still like to link arms with somebody for guidance if I am in a new or busy place though.

One thing I have learnt is that you shouldn't feel pressured into mobility training. If you are not ready, I honestly don't think it will be as effective. Your time will come and when it feels right, you should go for it. Do it for yourself, not for other people.

I have heard stories of people who consider their cane as their best friend. Even now, I wouldn't go that far. Mine is more of a helpful acquaintance. I don't give it daggers any more, and it is kind of good having it around. But don't tell anyone, then they will know they were right.

Talking bathroom scales - Graham

The equipment centre at Mappin Street is brilliant as there is a wide selection of products to examine and often test to see if a product is going to help with your specific needs.

I have recently been told by my doctor to 'lose weight', something my wife has been telling me for a while but the problem is motivation and it is also a faff to ask someone to look at the bathroom scale for you every time you get weighed.

Last month I decided to buy one of the 'talking bathroom scales' available from SRSB. Priced at just under £30 it isn't as cheap as a non-talking equivalent, but it tells you your weight a few seconds after standing on it. There's no switching it on or anything, just stand on it and it says "hello". I say "hello" back, not wanting to be impolite, and then it gives me my weight in either stones and pounds or kilograms.

My wife was a bit sceptical about whether I would use it, but in fact, both her and me now get weighed every morning before breakfast and have been drawn into a slimming competition. This is all in good spirit and a bit tongue in cheek but as a result we are both losing weight. I have already lost at least a quater of a stone and my blood pressure has reduced.

Needless to say, I highly recommend the talking bathroom scales so I thought I would share this with you.

Charles Bonnet Syndrome - Amy

I myself do not have Charles Bonnet Syndrome (CBS), but it is a condition that I find very interesting.

CBS can happen as a result of sight loss. This happens because your brain can't make clear images from your eyes, so it replaces them with visions that aren't really there. These visions vary from person to person. Some have visions of people in historic clothing, things moving around in front of them, patterns, wallpaper that they know is wrong.

CBS is not widely known about. It can often lead to worry and panic in the person and their loved ones. People suffering with this condition are often too worried to tell others about their visions, as it makes them question their mental health. To the people with CBS the visions are very real. To be told it isn't real or that they are just seeing things can be very frustrating.

The visions of CBS just come and go as they please, no rhyme or reason, and no two people have the same.

Mood and stress can make these visions more frequent, and more cluttered. They don't always see just one thing at one time. There are often two or three things at the same time. This is something they learn to live with, this is the world they live in.

The visions seem as real as anything a fully sighted person would see. It may be strange, but it's there. It doesn't matter whether others can see it or not, because they can and it's a part of their life. Even many doctors, opticians and opthalmologists are not very aware of this condition, therefore do not even consider it as a diagnosis.

At Sheffield Royal Society for the Blind we are working very hard to spread the word of Charles Bonnet and make people more aware that this condition exists. Since learning about CBS I have become very passionate about raising awareness for it. Together we can all help to spread the word.

Charles Bonnet Syndrome support

A note from SRSB

SRSB has a dedicated support group for people with Charles Bonnet Syndrome. If you have experienced visions as part of your sight loss and would like to talk to someone about it, you can contact SRSB on 0114 272 2757.

There is also a national campaign group called Esme's Umbrella whose aim is work towards a greater awareness of Charles Bonnet Syndrome. Their website contains lots of useful information.

Holiday in Whitby with the Sheffield Visually Impaired Walking Group - Ken

Sheffield Visually Impaired Walking Group (SVIWG) organises volunteer led walks for visually impaired people (VIPs) in and around Sheffield.

This user-led group offers VIPs the opportunity to go walking regularly, assisted by trained volunteer guides. They are one of the sports and leisure groups that are supported by SRSB.

They recently had a group walking holiday in Whitby.

Sunday 10th September

The coach which was hired for the duration of the holiday delivered us to the Saxonville Hotel adjacent to the Whitby FC Football Ground at approximately 1pm.

The majority of the party decided to walk along the seashore to Sandsend, then back via the cliff path. Four of the party attended a modern brass band concert which they thoroughly enjoyed while a few members decided to go under their own steam for a short walk.

All of the party congregated back at the hotel at 4pm ready to be issued with their room keys. Each evening meal was served at 7pm with a choice of three items for each course. Breakfast would be served at 7:45am with various foods to choose from.

There was a bar but no entertainment provided, so a few individuals participated in a short walk after dinner and located a few public houses to visit.

Monday 11th September

All those participating on the walk were to congregate in the foyer ready to leave at 9:45am. Beforehand Mary and Janet kindly volunteered to walk into Whitby to collect sandwiches for the majority of folks who required something for lunch.

The party travelled via coach to Saltburn where we were met by a couple of local ramblers who were to lead the walk. The distance was 7.5 miles walking along the sands via Marske-by-the-Sea through to Redcar.

The weather was fine but blustery, plus we encountered a couple of heavy showers.

On arrival we visited the Lifeboat Museum which most of the congregation found interesting. Sadly the trip up the vertical pier had to be postponed as it was closed. We therefore clambered back onto the coach bound for the hotel.

Tuesday 12th September

We boarded the coach travelling to Grosmont where the steam train was due to depart for Pickering. Some of us enthusiasts stood alongside the locomotive to see, hear and smell its departure.

Paula from the local Ramblers Association lead the walk taking the path from Grosmont to Goathland through a wooded valley and up a steady incline to Goathland station where we stopped for lunch. Some of the party dropped out at this point but others continued through an old miners' track onto the Yorkshire Moors then along to the pickup point where the coach was waiting.

On arrival back at the hotel, Paul and I had a walk into Whitby calling at the Railway Station to enquire about times and prices to ride on the steam train.

Wednesday 13th September

This was planned as a free day where anyone could do what they wished. The weather overnight had been atrocious and it was still very windy as we sat down for breakfast.

The lady from the local Ramblers Association contacted Chris and terminated the scheduled walk along the cliff tops. However Chris decided to go ahead and organise a walk for those interested.

The party of 11 set off from the hotel to the abbey incorporating the 199 steps. George and Andrew joined us previously having been dropped off via the coach.

We initially had a look inside the church before setting off along the Clifton Way through Saltwick Bay. We then walked alongside the foghorn which warns ships how close they are to land then stopped for lunch at the lighthouse.

David found a walking boot but no one in our party claimed it.

We walked back to the abbey mainly via road where we descended the 199 steps once more. At the bottom we decided to call and enjoy a well-earned drink before browsing the shops then strolling back to the hotel.

The group had a great time and all arrived safely back in Sheffield already talking about the next trip!

If you are visually impaired and would like more information on joining this group, please visit the SVIWG website.

The Magic of Mappin Street - Amy

When my sight first got worse, I couldn't see the point of anything. There was no point in anything, because I couldn't do anything. Nothing right anyway because losing your sight ruins everything. Everything you do takes twice as long, even then you can't always do it properly. Just physically taking one step in front of the other involved a lot of concentration and focus. It was physically and mentally draining, it still can be.

For years I put off coming in to SRSB (Sheffield Royal Society for the Blind) because I just wanted to deal with things on my own. I didn't want the label of being blind, I felt that coming here would give me that label. I was wrong.

SRSB is a friendly place for people of all ages and sight levels. I imagined everybody to be sat talking about how bad their sight is. I just wanted to forget, not talk about it. I was wrong about that as well. The conversation varies like it does everywhere. But if you do want to talk about your sight, everybody will understand quite well. Even the staff have Visual Impairment Awareness Training. This gives them more of an understanding of what it's like living with sight problems. No divisions, no labels, SRSB is just a big group of friends together.

Eventually I felt ready to start moving on and making something of myself again. I had mobility training and started using a guide cane, which I was VERY reluctant to do at first. But it had to be done, it was the only way forward. While I was doing it, it didn't really feel like training. I didn't feel like I was learning anything. I then realised I wasn't learning anything because I already knew it. I knew what to do, I just needed the confidence to do it. At first I didn't feel more confident. I was still a nervous wreck, but I learned to ignore it.

The more time has gone on, the better I have become at ignoring it. There are still days where I can't ignore it, I think there always will be, but not as many. I needed to concentrate on where I was going and what I was doing, instead of worrying about everything.

The opportunity then came along for me to start volunteering for SRSB, working on the Blindlife Blog. Before I started coming here I felt like the only one in the world who can't see properly. Obviously I knew I wasn't, but it felt that way. Now I know that I am definitely not alone and many other people are dealing with the same things as I have.

I have had so many compliments on my writing for this blog, it is unbelievable. I have never seen myself as a good writer, or able to write anything that people would enjoy reading, so it has really surprised me. I also promote the blog using social media, which I enjoy. I always did want a job playing on Facebook!

One of my blog posts was used in a Living With Sight Loss course at SRSB. I was told that the post actually helped a few clients deal with and understand how they are feeling. Ever since I was a child I have always wanted to do something to make a difference to people who really need it. The reaction to the blog post has made me feel like I have possibly done that.

It has been suggested that I do some counselling training so that I can help people oven more. This is definitely something I am thinking about for the future.

I have also been given the opportunity to do collections for SRSB and help with Visual Impairment Awareness training.

I have been on the radio once and I have been asked to do it again on another station. Everybody seems to want to hear what I have to say, I don't really understand why. I'm only me, just saying it how it is.

Before I started the blog I felt like I had no opportunities and I never would. Now, I have so many, way too many to choose from. So for now I'm just trying a bit of everything and enjoying the ride.

 That's the magic of Mappin Street!

Non-slip tea trays - Graham

Tea trays are great when you can't see very well... until, that is, you trip slightly on the edge of a carpet or stair and the tray's contents start sliding about which makes matters worse.

A few years ago I went on a Blind Sailing Week in Cornwall and noticed that on yachts with small galley kitchens, thin sheets of perforated rubber material are used on most flat surfaces to stop cups and plates sliding about due to the side to side movements of the boat. It worked a treat.

So on returning home, I bought some rubberised material from Wilko's for a couple of pounds and it is fantastic to put on trays. It stops sliding completely.

It also protects posh furniture from ceramic vase bases scratching the surface and can be washed every now and then so it lasts for ages.

At the time of writing Wilko's have the 'Wilko Dashboard Mat Non-Slip' in stock, priced £1.40.

A Day in the Town - Dave

When I have the need to go in to town I walk quickly up the road and get on the bus, usually upstairs if a double decker is running on my route on the day. I know where the nearest bus stop is to where I need to go so I am ready to get off and head off into town.

I know the quickest route from A to B from where I am to where I need to get to, so off I go dodging round numerous people with numerous bulky shopping bags and around all the street furniture (which is the council's correct name for such things as lampposts and any other type of post) and the large refuse bins for communal use and the seating areas and the large square concrete planters containing pretty colourful seasonal flowers.

I arrive at the large store and know what I want and where it can be located, so I make a bee line for the desired area, get what I went for and I am away on the return trek home.

When I take my partially sighted daughter on exactly the same journey, we have had to learn "how to cope". I walk slower up the road whilst holding my daughter's arm and along the way I am letting my daughter know when we are approaching a section of uneven pavement, although my daughter does know our particular road layout pretty good now. On other roads I mention whether the upcoming curb to cross the road is a deep or shallow step and at the same time I am looking out for a dropped curb of a driveway, which does make crossing the road easier.

I find the nearest seats on the bus and try and sit down before we are jostled about, having our shins and arms and fingers bruised on the backs of the seating or the metal poles when the bus is in motion, although some bus drivers do wait for us to be seated before driving off when they acknowledge that my daughter has a white stick.

When we get near the bus stop to get off the bus I start looking around to see if anyone else appears to be getting ready to get off the bus and if so I look to see if they are going to be pushing pushchairs or going to be in our way for any reason that may prevent us from getting off the bus safely.

So, we are off the bus and jolly well off into the town. The first thing that I think about is that we are now walking two abreast with me needing to hold my daughter's arm to guide her past the hundreds of people walking towards us who in some cases are reluctant to give up even a few inches of pavement.

I hold my daughter's arm for reassurance, especially when it is a sunny day when the glare of the sun can make the going difficult for my daughter and the same if it is rather gloomy, but inbetween weather conditions is not too bad.

I am constantly looking far ahead for the most convenient route to take that has space for us to move unhindered and has even ground to walk on to get to our destination and at the same time looking for any immediate obstructions in our way whilst letting my daughter know what the state of the pavement is like ahead.

The first obstacle at the store is the door. Some you push, some you pull, some are automatic and some doors can be very heavy to open. Either way, I judge if the opening is wide enough to allow two people to get through side by side.

Then you are confronted with the aisles. Some are wide and some are narrow, it is easy to knock items off off a shelf if not careful and there is usually a display stand across the aisle to get around whilst negotiating the store full of people.

After making our purchase we most often find somewhere uncrowded for a sit down and a drink before we set off for our trek home, which gives me time to sit and reflect on how proud I am of my daughter, and how we most certainly have learnt "how to cope".

A night to remember - Amy

In the days when I was finding things hard, I was isolating myself from everybody, especially my friends. We never fell out, I just pushed them away. I sometimes felt like they didn't understand enough. I realise now that they did their best with the information they had, I never told them how down I was feeling. We kept in touch, but only just.

When I went into hospital they all sent me a get well card. I really wasn't expecting it and it meant a lot that they all still cared. It had been two or three years since I last saw them. I knew then that I had to make things right with them.

As I started to get better I saw my friend Hannah more, I saw her a few times on her own which I really enjoyed.

Not long after I got an invite on Facebook to my friend Adam's birthday, like I had done every year. For years I had always thought about going out too much and talked myself out of it. This time was different, something was telling me I needed to go. I spent a few days thinking about what could go wrong as always, but my gut feeling was that I had to go, I wanted to go. I was quite surprised with myself.

The night came and I met Hannah early while it was still light, one by one all of my other friends came. Each one gave me a massive hug and said they had missed me and how it had been too long. I could tell they genuinely meant it. I felt a bit odd and out of place because I hadn't been out with them all since my sight had got worse. I wasn't very up to date on all their news so half of the time I didn't know what to say, but they included me the best they could. I couldn't believe that after all that time, and all that distance, they all still wanted me around. It's like they were there, just waiting for me until I was ready. I felt so overwhelmingly loved that night, I still do. It's a night I never want to forget.

Nearly two years has passed since that night. I have been to just about every night out, every celebration, every gig and every get together. Most importantly, I have told them EVERYTHING that I should have told them all those years ago. And now, we are closer than ever.

My lovely friends Hannah, John, Adam S, Adam A, Michael and Chrissy!

Impaired Visions - a poem by Mike

Once I had good vision, and life seemed fine
Along came two strokes, time to toe the line
Things taken for granted, seen as clear as day
Now smothered forever in a misty way

Now I live in a world that's passing me silently by
Viewed though as through a misty fogged up eye
It’s just like, all around me has suddenly changed
Viewed with fogged up eyes, my sight rearranged

The moon and the sun's magic is still up there in the sky
But the wonder and glamour have gone for my misty eye
However I have new wonders instead to brighten my day
I have Charles Bonnet Syndrome with lovely display

These visions, along with a positive view, have brought life
I now through this condition, along with positivity, not strife
Experience nice people, gaudy costumes, colours and shapes
Live life in a positive manner, go for it don't give in friends.

Memories - Amy

It 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.

Thank you Mappin Street - June

Mappin 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

Trust - Amy

Everybody 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.

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.

ARGH!! ANOTHER SILENT WARNING BOX HAS COME UP. MARIE, CAN YOU GET OUT OF BED AND COME HERE? I NEED YOU TO TELL ME WHAT THIS SAYS...!!

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.

What I got from the Optimeyes Project - Mike

Optimeyes 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.

Positivity - Carol

If 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

Mental health and sight loss - Amy

As this week is Mental Health Awareness Week I thought I would share with you the effect sight loss can have on your mental health.

Some people may think sight loss is just losing your sight but there is so much more to it than that. More than you would imagine.

Coming to terms with sight loss can be a very long process. Everybody deals with it differently, just like every other thing there is to deal with. For me and many other people it took years. So many different thoughts and emotions go whizzing around in your head. None of them good.

Fear

Fear of what is happening to you and what will happen to you in the future. Fear of what people think of you, fear of being a burden and annoying people. Fear of making lots of mistakes.

Loneliness 

You feel like the only one in the world that is in your situation. You don’t want to be around people because things aren’t the same any more now you need help.

The less you are around people the less you want to be around people and you can become isolated. If all of your family and friends can see quite well, you can feel like the weird one. Not because of anything they have done or said, just because of your sight loss, it makes you different.

Anxiety 

The loneliness leads to anxiety. Getting out of the house, even with somebody, can become a massive challenge.

You sometimes sit and worry about when you are going out. You sit and think about everything that could go wrong and how horrible it is going to be. And it will be horrible, because outside there are people, cars, lampposts, road works, every kind of trip hazard you can think of.

Just walking up to the local shops, your heart can be pounding and you just want to cry and run back home.

I used to take slow, deep breaths and try to concentrate on breathing instead of all the anxiety going on in my head.

Anger 

You feel angry at the world for doing this to you, anger because nobody can make it stop. Anger at people for helping too much, anger at people for not helping enough.

Anger at yourself because you feel like you can’t do anything right. Anger at obstacles for getting in your way.

Anger because people keep trying to help you when you don’t want it, even though you need it. It takes a long time for family and friends to adjust to when you need help and when you don’t.

Out of control 

For me it felt like my whole world had exploded and all the pieces were flying off in all different directions and spiraling out of control.

As hard as I tried I just couldn’t get all the pieces back and fit them back together properly.

I lost control of my life and I lost control of myself.

Depression 

You can feel really depressed because your life has changed, probably forever. You can feel useless, worthless and like everything is pointless. It feels like there is no future. The only future is one with sight problems and you don’t want that.

Overwhelming

Some days you feel just a few of these feelings, other days you feel all of them. Some days, you just don’t know what to feel, there are so many to choose from, so you just feel numb.

Eventually you come to...

Acceptance

I believe that the acceptance stage is when you finally feel ready to move on and rebuild your life. It won't be the same, but in some ways it might be better. Yes really! Acceptance itself takes time.

Six years after my sight got worse I have only just started being around other visually impaired and blind people. I didn’t want to have friends with similar problems to me, or be part of any special groups. Finally I am ready to do that and it has helped me.

It does feel really good not to have to say “sorry about that, I can’t see very well” all of the time. At Sheffield Royal Society for the Blind (SRSB) everybody knows. I feel now that I have been going there, I have finally finished my acceptance.

Six years on and I am getting out a lot more, I am closer to my friends than I've ever been and am loving working on this blog for SRSB. I have even started trampolining! I never thought it was possible to do half of the things I have achieved. Every single day I feel so grateful and lucky for how things have changed and for being so extremely happy.

If there is anybody reading this who is struggling to come to terms with sight loss, please don’t do it alone. There are many, many people out there who want to help. Believe in yourself, things will get better even if you don’t believe it.

Trampolining - Amy

When I was at school I absolutely hated PE. It involved sports, shorts, mud and usually being accidentally hit by some kind of ball or bat.

The only two things I was any good at were volleyball and trampolining. I actually looked forward to PE when we were doing trampolining. I wasn’t the best in my group but I was definitely not the worst for a change. I enjoyed it so much I went to the trampolining club after school.

When I left school I left trampolining behind as well. I always wanted to do more, but life got in the way. Then when my sight got worse, I thought now it really will never happen. I really struggle with many much smaller things, staying on the right side of a trampoline seemed impossible.

Life has taught me a lot of lessons, about how life can be bigger and better, but it won't just happen. You need to make it happen.

A few weeks ago I started thinking about trampolining again. My first thought was, blind people on trampolines, that just sounds dangerous! But then I remembered that blind people can run, ski, climb mountains and do all kinds of adventurous things. Trying to stay on a trampoline sounded easy compared to all of those things.

I decided to send an email to Sheffield International Venues and see if there was any kind of extra support or help I could get with trampolining. Sheffield has world class sporting places, so if I can’t get the support I need here then it wouldn’t be very good. They emailed me back and offered me a free one to one lesson with a coach, to have a practice and see how it goes.

The days leading up to my lesson I was so nervous. I thought it will either go really well, or really badly. Somebody told me I had nothing to lose and everything to gain. All I could think about was all the different injuries I could gain if it went wrong!

The day came and I climbed onto the trampoline. Standing up was easier than I thought, it was staying stood up that was the hardest part. The trampoline is so bouncy and wobbly when you are not used to it, I remembered it would be

The trampoline was next to a wall, one end was next to another trampoline and joined together with crash mats. This felt better than at school, because there were only two sides to fall off, not four. The two coaches stood on the trampoline at the other two sides, so I couldn’t fall off. All around the trampolines there were mats on the floor, again, not like at school. I felt very safe.

I started jumping and I was wobbling and falling a lot. But that’s how trampolining goes at first. I was quite surprised that it didn’t hurt when I fell. I sometimes get muscle pains around my joints, so I was nervous about this as well. The more I practiced the better I got.

When I was more steady on the trampoline, the coaches got off and stood on the floor. They were stood by the trampoline though to keep me safe. I was talking to the coaches and one of them is the daughter of my PE teacher at school!

As I wasn’t in any pain from falling I decided to try out a few moves. I even managed to do a bit of a routine. The coaches seemed impressed, so did I!

When I came off the trampoline I felt alive, bursting with energy and so happy that I hadn’t broken anything. Until I put my shoe back on and realised I’d broken my toe nail!!! It hurt but I was relieved that’s all it was.

It’s taken me thirteen years to go trampolining again and now I plan to keep going back every week. Please don’t be scared about trying new things because of your sight. If you ask then you might get more support than you realise. Don’t think too much and talk yourself out of it like I always used to. Follow your dreams, don’t think, just do it!

Disabled Access Day at Barclays Bank in Sheffield - Gail

One Friday in March I went to Barclays Bank on the corner of Pinstone Street and Barkers Pool with Jane from SRSB as part of their Disabled Access Day.

We were warmly greeted by Stuart the Manager who introduced us to several members of staff. After an introduction by Jane she told them about SRSB and their role in supporting people with sight problems. I then spoke about what SRSB meant to me as a client.

The staff then all tried on the 'Sim Specs' which demonstrate what it is like to be visually impaired and asked lots of questions. The staff were very friendly and the atmosphere was very relaxed.

Next, Jane set up her stall, I volunteered for balloon blowing and Jane had also taken some equipment from the shop at SRSB.

Stuart spoke about their talking cash machines and as I have never tried one I quickly volunteered in trying this out. After a brief orientation of the cash machine Stuart handed me a pair of headphones and I was ready to start. After plugging the headphones in I was asked to press 5 to begin, asked to put my pin number in then asked to press 1 for a receipt or 2 if not needed, then asked to press 1 for £10, 2 for £20 etc.

After pressing the amount required to my great amazement the money popped out. I have not used a cash machine for 30 years and it was quite exhilarating. This simple task that sighted people take for granted really does seem like a great mystery to me as a blind person. I now feel confident in using this branch taking along my headphones and drawing out cash independently.

What is beautiful - Carol

The birds singing in the morning
 The owls hooting at night
When you are warm in your bed
Snug and tight
Children laughing and playing
But it is all beautiful without visual eye
It’s a different beautiful
Involving sound and not using an eye
You can't see it in a mirror
And the owls are always out of sight
So is it much different when you don't have your own sight
I feel when it's beautiful
I feel in the morning and night
The world is beautiful if you want it to be
It doesn't matter not being able to see
I am beautiful just like you

Life after sight loss - June

I’m one of the lucky ones. I am partially sighted.

When I first became type 2 diabetic when I was 59 years old, I was told that eventually I would go blind but fingers crossed, at 74 I can still read large clear print.

I had to give up my big choir and my knitting but manage to do my writing and am in the choir at the SRSB.

I am a bit scared at crossing busy roads but have found since I reluctantly started using my white stick a lot of people try to help. Especially giving you the priority seats on the tram.

I watch TV but can’t manage anything with subtitles. I’ve had laser treatment and horrid injections in my eyes but luckily at the moment only have to put one drop in each eye every night. And I only go to the hospital every six months.

The Weather - Amy

The weather, some like it hot, some like it cold, some like it wet, some like it dry, some like it dull, some like it bright. I like it just right.

On a dull, drizzly day, everything seems gray. I look into the distance and the gray pavements, gray roads and gray sky all merge into one. This makes it harder to focus on where I am going. Then it starts raining and that’s when things get complicated.

If I take a brolly then I’m likely to knock somebody with it by accident, plus I have my cane to hold. If I use my hood then it gets in the way of what I can see to the side of me. My peripheral vision isn’t good anyway, never mind with a hood in the way.

If it is windy I am holding my hood up instead of concentrating on where I am going and my glasses get spots of rain on them. Somebody rushes past me from behind. This always makes me jump and startles me as they seem to appear from nowhere. I usually have to stop and make sure everybody is well out of my way before I start walking again.

Finally I get to where I am going. I walk into the nice warm building and my glasses steam up! I think to myself, I can’t wait for a sunny day.

It’s a nice sunny day, clear blue skies, feeling good because it’s sunny at last. The colours are brighter, I can make out more objects in the distance. I can see where I’m going and where I’ve been. Still not great, but better.

Then I turn the corner and I’m walking towards the sun. it’s really bright and dazzling, I sometimes have to stop and get my bearings. I head towards a shaded area to have a break from the sun. Because the sun is so bright the shadows seem so dark. I can’t keep looking into the sun in front of me so I look down.

On the pavement there are shadows of trees, walls, cars and me. Even the shadows on the pavement are really dark compared to the bright pavement around them. Looking at these while I am walking makes me feel a little disorientated and dizzy. All I can see is moving shapes on the floor, not a safe, solid pavement for me to walk on.

When I eventually make it into the shade it seems really really dark. My eyes take a long time to adjust to the light, so even in the shade I can’t focus for a while. It can take five or ten minutes for me to adjust to the light.
For me the weather isn’t just something to talk about, or what to wear. It affects my mood and my independence. If the weather isn’t just right, I find it extremely hard when I am out. For me, the perfect weather is sunny, with clouds!

Charles Bonnet Syndrome Poem: An Optical Illusion - Mike

Now then, an optical illusion
Is when your eyes don’t reason
They tend to play tricks on you.
Show you things others don’t view
Some see something that isn’t there
Others trying to see it, stare and stare
Now take an abstract painting,
Then take a closer look, it will bring
All different kinds of objects there
Your mind can make them all appear
Try watching as the clouds roll overhead
Then look at the different shapes uncoloured
Take note, observe what is created there
Next time you look at an object, just be aware
It could be you’re seeing an optical illusion there

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.

The Wheelie Bin - a poem by Carol

It isn’t just one, they all get in the way
It was always on a college day
When Anna and I walked there and back
Anna thought she might get the sack
Some were easy to get around
And Anna had the gaps to find
Sometimes we ended up a bit on the road
Mum would often give us a ride
She knew how difficult it could get for us
When we got around the bins
Anna and I would sigh
They were moved all over by the time we returned
Mine would have disappeared
It would be in the neighbours' garden
And with their own
Probably thought as I couldn't see
So I wouldn’t moan
So Fridays weren't great
Thanks to those wheeley bins
They may get rid of the rubbish
But on Fridays they made me want to sin

Adventures of a blind person - June

I of course don’t know what it’s like to be blind as I am only partially sighted. But even then you have to learn to adjust. It can still be frustrating.

Since I was 14 I had to wear glasses for being short-sighted. I had to wear them all the time. I loved to read, and I needed them for that. I struggled a bit when I went swimming and of course for my music and words at my choir.

This lasted until the day before I was 59 when I went to have my eyes tested for some new glasses. They found something not right which led to months of tests at the hospital until I was finally diagnosed with type 2 diabetes.

I’ve had laser treatment and injections and am on a load of tablets every day. I also have to put eye drops in at night. Unless I have any problems I only have to go for a check-up every six months. I just have glasses and a magnifying glass now for reading with. I struggle with bright sunlight and the dark and don’t go out much on my own, never at night.

Life After Sight Loss - a poem by Carol

I've never had any sight
So I can’t say what's wrong or right
When I was little I pretended a lot
I wanted to be just like the other lot
I tried not to show my pain
It was hard then to accept my fate
Sometimes alone I would cry
In their own way my family would try
Eventually I coped pretty well
Being total wasn't the same
A little sight made such a difference
Even if it was a pittance
Magnifiers and strange looking things
For us totals anything that talks or sings
To be like the others I craved so much
Anything around me I loved to touch
Now I am used to being like this
For me with no sight
There's nothing to miss

Buying a new phone - Amy

One day you hear about a new phone that you love the sound of. It has all these amazing apps and features and you can't wait to get one. You save up, and eventually you have enough money to buy it. You go into town one day and buy it. As soon as you get home you set it up and start playing with it. Easy right? Not so easy when you've got a sight problem.

Here's how it really goes...

You don't want a new phone because there's a cool, new one out. You want a new phone because you need one, so that everybody knows you are safe when you are out on your own. You hear about all these new gadgets and phones, but none of them really matter because you probably can't see them or read them properly anyway.

One day you decide you need a new phone and you go to the phone shop. You need a phone shop where you can actually play on the phones, not just look at a dead one hung on a wall.

When you're looking through the phones they all look the same these days, they are all just a screen. You find a screen you like the look of and you start to play around on it. The first place you go to is the settings icon, and then accessibility. That's if you can read the phone to get that far. My Mum had to do that bit for me and change the colours so that I could read it.

I looked through all the accessibility options, the font type, the font size, the colours and themes you could change the phone to, to make sure I can actually read it. People with worse sight than me would find out what speaking options there are, if your phone will read the text to you, and if you can give verbal instructions to your phone.

You're not going to waste your money on a phone if you don't know you can actually use it. These are the things it doesn't tell you on the phone description or specifications. These are the things partially sighted and blind people need to know. Then you might move onto all the fancy things. The things that some sighted people take for granted.

You also need to be able to get to the phone shop in the first place. This brings on a whole new challenge...

Help with smartphones and tablets

A note from SRSB

If you are reading this and understand some of the comments that Amy has made, please note that we have been holding regular O2 Guru Days and there is another coming up on 28 March 2017 at SRSB.

We also hold ongoing Online Today courses with the next one happening on 27 February 2017 at SRSB.

Both of these courses are designed to help you with exactly these sort of issues. If you are interested in either, please contact us on 0114 272 2757 to book your place.

The blog is back!

It's amazing how time flies, and we didn't realise quite how long it has been since our last blog post!

We're delighted therefore that we have a new volunteer on board to get the blog back on track. Our client Amy will be writing her own blog posts and talking to other clients about their experiences of living with visual impairment. These are then passed to Anne, another volunteer, who uploads the posts for us.

You can read Amy's first post here.