Monday, 12 February 2018

Pancake Day - Gail

GailWhen I was growing up in the 60's Pancake Day was always a large pancake the size and thickness of a pizza now. It would be fried in a frying pan which was well used with ridges and the pancake always had these ridges printed on the pancake sometimes slightly burnt which made them taste nicer. I would have this with either jam, lemon or orange juice and sugar. After one of these there was no room for anything else.

Around Pancake Day we would always buy whip and tops. The whip was about 18 inches long with a leather thong threaded at the top with a knot. With this we chose a top which we would whip with the thong. We always used to take out the leather thong and swap it for a shoe lace which we frayed at the whipping end to give the top extra spin. We would have the choice of a carrot top or spinning top (mushroom shaped) with a long stem. Both these tops had a screw at the bottom to spin on.

I would always go for the spinning (mushroom) top as it went further when whipped.

We also decorated them with chalk and drawing pins to personalise them as when we played with them in the school playground it would differentiate between the dozens of tops.

I only remember playing with them around Pancake Day perhaps because the evenings had got lighter and we could play with them after school.

We do not see them now but great fun at the time.

Wednesday, 31 January 2018

SRSB Writing Group - Graham

Graham
Just found out that it is National Storytelling Week from 27th January and it reminded me of when I used to be a regular contributor to SRSB's writing group 'Mappin Writers' that meets on Fridays at 11am in the Centre on Mappin Street.

I was actually at the very first meeting  and came every week for about three years. I had written a few short children's stories and was just starting to learn to play the guitar so I could write and sing a few of my own songs.

It was a great period and I made some good friends in the process. Mappin Writers is still going and although some people have come and gone,  it is still going strong.

If you have always fancied having a go at writing short stories or poetry I recommend you try the group.

Don't worry that you 'might not be good enough', you might surprise yourself! And don't forget, if you can write or type it but not be able to read or memorise it. Snap! Not a problem as someone will read your work out for you if needed.

Anyway, having said all this I suppose I should give you  an example of the sort of stuff I wrote...

THE LONE RANGER by Graham Marshall

Why was the Lone Ranger never alone?
That Tonto was with him day and night.
He should have been called 'The Accompanied Ranger',
Then again, that doesn't really sound right.

They met when he found Tonto,  his head pressed to the ground.
"Kimosabi, five minutes ago three wagons passed this way" he said.
That's amazing replied the Lone Ranger, how can you tell?
Easy "Kimosabi,"... they ran over my head.

For ten years they 'ranged' as if joined at the hip,
Till one day Tonto was found dead in his tent.
Shot by the Lone Ranger with a single silver bullet.
He'd finally found out what "Kimosabi" meant.

I also wrote some serious stuff, but my main thing was 'daft ditties!

Friday, 19 January 2018

One year of SRSB - Amy

Amy
A year ago this January I started volunteering for The Sheffield Royal Society for the Blind (SRSB). It has been the most crazy year ever! In good ways for a change.

I am a client of SRSB and I was regularly in touch with them about various things. One day I was asked if I would like to work on the SRSB Blindlife Blog. I had never done any work like that before, I wasn't completely sure what a blog was. I had a rough idea. I was told that the blog hadn't been used much for quite a while. This was good for me because it meant I couldn’t break it!

Any kind of work was going to be good work. This was also good because it was all down to me, it was my project. I had plenty of support when I needed it from Jane at SRSB and Anne, another volunteer who publishes the articles on the blog, but moving it forward was up to me.

To start with I didn't know many people at SRSB so I thought I would write a few things myself, just to get things started. Around this time I had been looking for a new phone, so I decided to write about this. My next one was about The Weather. I started to realise that I was just writing what was on my mind, but everybody seemed to like it. I didn’t have a clue why.

Quite quickly my confidence seemed to grow. I hadn't been in any kind of work environment for six years. I had never worked with computers, or in an office, or on a blog, or done any real writing. Not since school. I was a nursery nurse, this was completely out of my comfort zone. But because I like playing on social media I thought I might be able to do it.

My confidence was growing more and more, I started going to the creative writing group at SRSB. This was originally just to see if any of them would like to write for the blog. I sat in on a session and it wasn't what I expected. I was expecting to be writing in the session and that you would have to be quite talented. It is so much better than that. It is a group of lovely people sat reading out their stories that they have written during the week. There is no teacher checking your grammar and punctuation, and nobody judges your work. Bill and Andrea who run the group are so welcoming and friendly. I felt at home straight away and felt comfortable telling them about very personal things.

After a few weeks I started to write my own things for the group. Again, everybody seemed to really like them. I had never seen myself as a writer, but everybody was saying I was talented and asking if I had always been into writing.

One day, I heard it was Mental Health Awareness week and I knew I had to write something about this. Mental health and sight loss are not linked together anywhere near enough. Losing some of my sight affected me very badly and I had to make a stand and show people what it can do to you.

I told Jane and Anne my plans and we got my story published on the blog that week. It was a rush, but it needed doing. This post got so many views and I got so many heartfelt comments about it. It really seemed to touch people and make them appreciate what it is really like to lose your sight. It isn't just losing your sight, it really can affect your mind and your general wellbeing. It can completely destroy your life.

This blog post was used in a Living with Sight Loss course at SRSB. After it had been read out, the whole room went silent. That was the moment I realised that I wasn't alone, all of those people felt exactly the same as I used to. That was the moment I realised that I was doing a good job and that these issues have been left unspoken for way to long. These things need talking about, and I was going to do it. This post is still being used today in visual impairment awareness training. I am absolutely thrilled that it is being used for things like this.

Not long after this I was asked if I would like to go on the radio. I was extremely nervous but I said I would. I had wanted to work on the radio a few years ago and I thought this was an opportunity that I might never get again. The show went really well and I sounded a lot better than I thought I would. I sounded like I actually knew what I was talking about!

Shortly after this I was contacted on Twitter by a London-based radio station. They had been reading the blog and wanted to know if I would do a phone interview for their sight loss show. This wasn't just local any more, this was London!!! They told me the questions they were going to ask me so that I could prepare. The questions seemed quite daunting at first, about politics and the government, which I know nothing about but I managed quite well when I had figured out what I was saying.

A while later I completed a survey on using transport with a visual impairment. Again I was asked to go on a big Sheffield radio station to talk about this. My third time on the radio in a matter of months! I was still very nervous, but good nervous. Once again, I loved it! I felt famous. Everybody wanted to hear what I had to say! And I loved it, I loved all the attention I was getting. I still didn’t really understand why, It was only me, just saying what I thought about the world. Why was my opinion so valued. I wasn't complaining for a second though. It was amazing to have my voice heard and my views respected.

A few quiet months passed, not too much fame going on, but it was still good. Then I was asked if I would like to be interviewed to be on the list of SRSB Inspirational People. Wow!!! That really did mean the world to me and always will. For a long time I felt very unhappy with myself and how I was living my life, so this was a big symbol of how things had changed. I had been doing something right at last, not just right but good. I had been doing good things for charity and for other people. I was really proud of myself.

Towards the end of the year I got a phone call from SRSB asking if I would like to meet the Lord Mayor of Sheffield in two days' time. I would be having photos taken to be on this year's Lord Mayor Charity Christmas Card! YES of course I did! More fame!!! They said they know I liked doing PR work so they wanted to ask me. Even so, I felt really special. I was the one client chosen to represent SRSB. When we went Sue introduced me as the face of SRSB. Wow! Little old me, the face of SRSB! The Lord Mayor Anne Murphy was so friendly and welcoming. She also made me feel very special. It really was a wonderful, fun and sentimental day.

One day I heard the Lord Mayor was in SRSB, she was at one of the Christmas dinners. I decided to go and say hello. She had won a massive box of shortbread in the Christmas raffle, and she said she would like me to have it. Again I thought, why me? Yet again another day when I felt really special and appreciated. Some of you may think, it's only a bit of shortbread, but it isn't. To me it means a great deal and it was another symbol of how my life has changed for the better. When I went back into the office I just blurted out "I've got a Christmas present from the Lord Mayor". Somebody in the office said "Well, I can't beat that"!

And that brings us to the end of a very eventful, sentimental and exciting year. One of the most memorable years of my life so far. Who knows what 2018 will bring. But I do know I am going to keep playing the fame game for as long as I can and getting my voice heard. There is plenty to talk about, and I haven’t finished yet!

Happy New Year Everyone! :-)

Monday, 8 January 2018

My school days - Graham S

Graham S
I have a condition known as Albinism which means that I have white hair and poor eyesight. Because I have no pigment in my skin I have to be very careful in the sun as my skin can't tan. Instead it goes from white to bright red and burning (never brown).

It also means that because I don't have pigment in the skin at the back of my eyes, when I look into a bright light the blood vessels at the back of my eyes make my eyes appear to be red. I find it very difficult to see in bright sunlight and have to squint a lot.

Also people with Albinism don't have something connected at the back of the eyes which most people have (I don't know the correct medical term) and this means that my eyes are moving constantly so spectacles can't be used to improve my vision.

Having been asked to contribute to the SRSB Blog I began to think what difficulties I have encountered through being partially sighted.

Although I am registered as visually impaired, I consider myself to have good eyesight compared to most visually impaired people so I suppose that I have not really encountered too many problems other than the usual one of not being able to see which bus is coming and working out which platform I need to be on at a railway station.

Not being able to drive makes you an expert on bus routes and timetables but I frequently put my hand out for the wrong bus because maybe the bus company has put on a single decker instead of the usual double decker or something similar.

However I hated my school days. I am 65 now so it is difficult to remember all the detail of why I have chosen the word 'hated' but I know that whenever I look back to those days I don't have many fond memories.

From a learning point of view it was very difficult to read the blackboard and the embarrassment which I felt if attention was drawn to me because of it was horrible. Even to this day although I don't think that generally I have any confidence issues, I hate having to speak to an audience of more than four or five people. I would write notes based on what the teacher was saying, rather than copy text from the blackboard. Because of this and the fact that reading textbooks isn't the easiest thing for a visually impaired person I didn't do too well in exams.

The exception was woodwork and perhaps surprisingly technical drawing, both of which I excelled at and both of which didn't rely on the blackboard for instruction.

I look now at little Finlay, a young client of SRSB who must be now be around school age, and I am hopeful for him that these days extra help should be available for disabled people with special needs to provide them with equal opportunities.

The other side of school life is the social life and in particular the time spent in the playground. My memories are mostly of being called names because of my appearance. This would be called bullying these days and dealt with differently. I soon learned that a couple of decent boys were the ones to have as my friends but looking back the bad times seem to mask my memories of the good times.

After leaving school my life changed completely. My employers have all been very understanding as have my colleagues and I loved learning at college. I did OK in my chosen profession of transport management and since work I have, until recently, had a picture framing studio in Sheffield city centre. I have some great friends and I have traveled abroad extensively.

I would like to end with a message to Finlay and his parents. Finlay really has nothing to worry about in his future. If his life turns out half as good as the first half of mine has (you can do the maths) he will have a wonderful time and hopefully he will find his schooldays better than mine.

Going forward, I am currently having a canal boat built so maybe future blogs might be about my boating experiences.

Thursday, 21 December 2017

The guide cane - Amy

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.

Friday, 1 December 2017

Talking bathroom scales - Graham

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.

Graham with the talking bathroom scales

Tuesday, 14 November 2017

Charles Bonnet Syndrome - Amy

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.