Join us on Tuesday 7th March from 6.30-8pm as experienced coach Sydney May leads a free session for people experiencing sight loss or who have been diagnosed with a vision impairment or degenerative vision.

In a relaxed group setting with others in similar circumstances, we’ll discuss techniques to support and deal with the trauma and uncertainty that comes with sight loss as you start your next chapter. We’ll cover topics such as:

To register either call 01903 235782 or do it online here: https://www.eventbrite.co.uk/e/adjusting-to-sight-loss-tickets-523596720887

We are delighted to be part of this month’s Tesco Community Grants Scheme. The scheme gives SSW the chance to secure valuable funds, in this case to support our mental health walk and talk sessions.

Voting starts in stores from the first week of July 2022 and continues until 30th September 2022. 

If you find yourself in a Tesco (our local participating stores are listed below), make sure that when you pay you ask for a token, and then place it in the relevant box.

Here are Worthing’s participating Tesco stores:

Findon Express BN14 0EL Dolphin Express Dominion Road BN14 8LBBroadwater Express BN14 9DADurrington Express BN13 1QYRectory Road Express BN14 7PE Goring Way Express BN12 4TY  South Farm Road Express BN14 7GA  Chapel Road Express BN11 1EG   West Durrington Extra BN13 3PB Goring Road Express BN12 4AJ  

You can check the locations here: http://www.tesco.com/store-locator/uk

Thank you!

by Ali Bates, SSW Tech Advisor

 

It’s Mental Health Awareness week and the theme this year is loneliness. Loneliness is something that one in four of us suffer with at some point in our life. Today I will share my own experience of dealing with loneliness after sight loss.

Six years ago I suffered a detached retina. It was completely unexpected. I woke up one day with slightly blurry vision in my right eye and didn’t really pay it any attention as my eyes would occasionally go blurry and correct themselves later in the day. On this occasion it did not fix itself and I ignored it. I happened to have a routine optician appointment booked in and it was during this that I got told my retina had detached and I should visit the eye clinic.  Me being me, I left it a few days…  I worked at the hospital at the time so I just called the eye clinic on my next shift.  They demanded I came in to them immediately.

I had not expected that what was going on with my eye was an emergency that required urgent surgery. Unfortunately for me, the surgery was not a success. I woke up from the anaesthetic in complete darkness and excruciating pain. Nobody told me but I knew immediately that it had not been a success. The reality of sight loss had not previously occurred to me,

As part of my recovery I had to learn to sleep on my front and lay facedown for 80% of the day in order to give any chance to have some useable sight.

I existed like this for six weeks, in darkness and constant pain. My husband became my carer; he fed, bathed, did hourly eye drops and did everything in the house including looking after both of our children as well as me. For both of us it was incredibly lonely. I was bored, I wanted to read the news, see a friend and just feel normal and not like I was a burden on my husband.

One Saturday, a few weeks in, everything came to a head. I had only left the house for hospital appointments. My husband was physically and mentally exhausted from doing everything and dealing with the shock and uncertainty of my sight loss and inability to do anything. It was like the mental load had physically paralyzed him. We knew we needed some help from outside our four walls but this was not something either of us had ever sought before.

Monday morning my husband called the GP. He asked for help, he broke down, he felt like he had somehow failed as a husband. But, as I type this, I am literally sat here with tears in my eyes because I am so proud of him for recognising he needed some help. It was not failure; it was acceptance that he is human and there is only so much we can deal with on our own. During our entire relationship, every hurdle we have faced we have got through together, but he was so busy being everything to everyone else that he had nothing left for himself. Something had to give.

He had counselling; he was able to talk openly with someone that could help him adjust to our new normal, give him coping strategies and help him feel less alone. He felt able to tell me how he was feeling without feeling guilty, as the reality is that we both lost a lot more than an eye.  It changed who we are and the dynamic of our relationship. It was a long recovery but as I adjusted to living without my right eye I was able to be his supportive and fun wife again.

My own mental health recovery took a lot longer. I was so determined to get back to normal and back to work, that I did not stop still and give myself time to make adjustments; I threw myself into everything. I was in denial and angry at the same time. Everyone around me was so busy telling me that I am so brave and what an inspiration I am, which only confused me further as some days my only achievement was getting out of the house to get the kids to school.  I would then go home and sit in my house alone, hiding from the real world so no one could see how not ok I was. The short periods of time I was with others I could put my mask on and pretend all was ok.

It was actually our mortgage falling through nearly three years later that finally broke me, us buying our first home had been a focus for so long and at the last moment it was taken away from us. This rekindled my feelings of life being unfair and I went into a tailspin. All my focus went on finding us somewhere new to live and, thankfully, it only took 11 days to find somewhere and get moved in. But then I had a full breakdown. I could not hide from my feelings anymore. I didn’t want to take pills to numb the pain; I NEEDED to deal with everything so now it was my turn to reach out and ask a professional for help. I was lucky to be given a counsellor very quickly.

This lady changed my life. I worked through so much of the trauma I had been living with, accepted that I can still be me even with sight loss and, most importantly, I started to talk openly and honestly. It was not an overnight fix; it has been a long road of acceptance. I still have days of negative feelings but they do not control how I live my life or fill me with feelings of inadequacy. I definitely have many more positive interactions. I will always have a small amount of denial that I am blind but I know that is my stubbornness and determination to live my life on my terms.

I am sharing this as I know being open and honest with my experience may make others feel that they can ask for help. Here at Sight Support Worthing we are passionate about offering our members and their families the support they need. One of our future plans is to offer specialist talking therapy for those living with sight loss as well as their immediate family.

We are putting in a bid to the National Lottery to help fund this vital service. As part of the process we would like feedback from our community. Those of you on our mailing list (email and post) will have had a copy of the survey already. For those of you who have yet to complete it, you can find it here. It should take 3-5 minutes of your time and your feedback will be extremely valued. Thank you.

 

SSW has been awarded £600 from the Adur and Worthing Trust, as part of Creative Commissions 2022, for its Platinum Jubilee Community Art Project.

The aim of the project is to, as we emerge from the effects of the pandemic, find new ways to engage and connect with both our members and our local community. This project will achieve this objective by collaborating with local talented artists to produce art that will be on show to the public, enhance our neighbourhood, and also foster a good community spirit by celebrating the Queen’s Platinum Jubilee together.

The project includes a series of workshops and events using a variety of techniques and materials to produce large material banners and wire crowns that will be displayed for the public to see and enhance the local area, ready for the Platinum Jubilee celebrations.

photo of people creating banners as part of a workshop at SSW

Our plan is to then host an afternoon tea in late May for the artists and everyone else who has participated in the project. This will be an opportunity to celebrate working together as well as the 70 years of her Majesty’s reign. 

All events taking place as part of the Platinum Jubilee Community Art Project can be found on our calendar. Contact the Centre (01903 235782 or info@sswcharity.org.uk) to book a place on any of the events.

SSW has several partners in the project including Storm, Art-ful Pottery Cafe and the West End Gallery, all of whom are based near to SSW’s Centre in Rowlands Road. We’re also working with Fiona McVey and Jude Bitton of Inclusive Arts on this project, with Fiona being familiar to SSW members as our art teacher! It is hoped that the project will forge strong relationships between the partners and generate a feeling of community spirit.

The large, decorated banners created will be hung, prior to the Jubilee Bank Holiday weekend in June, on the metal posts positioned on both sides of Rowlands Road for everyone to enjoy. Large wire decorated crowns will also be made, at the organised workshops, and positioned securely on the top of the posts to add an extra dimension to the project. 

We hope you can either join us for part of the project, or take a stroll down Rowlands Road later this Spring to admire the creations made by all involved!

logo for the Adur and Worthing Trust, with the strapline Commit to Culture

James Langley joined the SSW team in late 2021 as our Events Coordinator and Accessibility Tester. He also works for Blatchington Court Trust as a Leisure Development Officer. Outside of work he has a busy life and enjoys socialising with his buddies, exploring on his mountain bike and honing his Judo skills.

James is visually impaired; he has nystagmus and ocular albinism. Spurred on by SSW team-mate Ali’s recent experiences with her eyes, James has recently asked to be referred to the eye clinic as it has been years since he has had any input from them. He’s aware that there may have been changes in his eyes or he could have even had unknown conditions develop.

Nystagmus presents itself as an involuntary movement of the eyes. In James’s case this is horizontal but it can be vertical, circular or a mixture of these. The condition is due to the signals from the eye to the brain being disrupted and, as such, it cannot be corrected by lenses. James finds it hard to see near things like printed text as well as far away things like objects in the distance.

Ocular albinism reduces the colouring of the iris (the coloured part of the eye) and the retina, which is the light-sensitive tissue at the back of the eye. It affects visual acuity (sharpness of vision) and makes James more sensitive to light. It takes a little longer for his eyes to adjust when he goes from a light room to a dark room and vice versa.

We’ll check back with James when he’s been to see the eye clinic for an update. 

Perhaps you’d like to share a little bit about you and your eye health? We’d love to feature you on the website too! Get in touch with Emily – emily@sswcharity.org.uk

by Chris Green, Tech Advisor

There are so many different types of technology out there, it can be hard to keep up. In this series of blog posts, I’m going to take a look at some of the latest accessibility tech to see if it’s worth it. Whether you’re a tech expert or just starting to think about the possibilities, we’re sure you’ll find something new here.

In this post, we will discuss the merits of introducing a smart speaker such as an Amazon Alexa or Google Home into the house, and the associated costs of entry.

So, what is smart tech?

This is a diverse subject with many offshoots, but the general definition is as follows:

It is a technology that uses artificial intelligence, machine learning, and big data analysis to provide cognitive awareness to objects that were in the past considered inanimate.

In this series of blog posts, we will be focusing on ‘Smart Devices’. The definition of a smart device is as follows:

A smart device is an electronic device, generally connected to other devices or networks via different wireless protocols such as WiFi. They can operate to some extent interactively and autonomously.

Some examples of smart devices you may already be familiar with:

What is a Smart Speaker?

If you’ve ever heard someone saying ‘Alexa’… ‘Hey Google’… or ‘Siri’ then they are most likely initiating contact with a smart speaker. A smart speaker is a speaker with a built-in microphone that allows users to interact with other smart devices or internet services using their voice.

Saying these keywords (‘Alexa’… ‘Hey Google’… or ‘Siri’) is a way of opening a line to the internet, the same as picking up the phone is opening a line ready to dial a number. It is the job of a smart speaker to translate your spoken word into text which is then sent via the internet as a question or command.

 

graphic depicting how a smart device works and a person's interaction with it

 

What will it do for me?

The examples below can be performed by using voice commands anywhere in the room:

What will I need to get going?

**it’s possible that a friend could complete the initial setup for you

How much will it cost?

If you have no internet, smart phone or tablet then the initial setup cost will vary depending on the devices you choose. The prices below are based on what I feel would provide adequate performance for value.

One off cost

Email account – FREE
Smart phone or tablet – £80
Smart speaker – £30

Ongoing costs

Average cost for a basic internet connection – £19 pcm

Is it worth it?

Personally, as someone who has been using smart devices for a number of years, I have grown accustomed to the convenience of having an encyclopaedia of information to hand for those moments when the grey matter isn’t up to the job.

I also like that my smart speaker doubles up as a radio alarm clock, controls my lighting, I can set my house alarm remotely or control my heating if I’m away.

Do I ‘need’ a smart speaker in my life? Probably not, but it sure does help.

 

If you’d like more advice or help setting up tech in your home, please do get in touch with me, or my colleague Ali, and we can discuss the possibilities available to you.

 

by Alison Bates, SSW Tech Advisor

Ok, so I will start off by saying I didn’t actually notice I am blind. Earlier this week I had an appointment with the eye clinic and during the visit a doctor suggested I be registered as sight impaired. I was pleased as I have been asking about this for the last few years but got fobbed off and didn’t pursue it.

Today I had a sight care advisor call me to ask some questions, so that she could get the paperwork sorted to get me registered as severe sight impaired. I had to ask her to repeat herself as I thought I was being registered simply as sight impaired. She apologised as she had been told I had consented to being registered, which I had: I just had just assumed it was for sight impairment.

Sight impaired means partially sighted, and severe sight impaired means blind. But I can see – sort of – out of one eye that randomly goes blurry. But I CAN SEE! It’s just hard work. ‘Blind’ doesn’t mean no vision – I know that – I just never really considered that my sight was that bad.

Then I remember I can’t read books anymore, not the paper ones anyway. I can’t make eye contact with people because I can’t see their eyes; I can’t even see my own eye colour in the mirror. So this, and so much more that I don’t even take into consideration, means that legally I am blind.

This changes nothing about me or my sight except a bit more self-awareness. Maybe I will be more patient with myself and allow more time to process things, ask for help and – even better – still accept help when its offered rather than just trying to stubbornly get on with it (yeah, right). 

 

Alison Bates, official BLINDO

Have you or a family member been diagnosed with sight loss? Share experiences with others in similar situations and find out about services available to you.

SSW is pleased to be partnering with the RNIB to offer a Living Well with Sight Loss course.

This free, informal course aims to help you increase your independence, boost your confidence and connect with others to share experiences. Through these sessions you’ll get practical advice, information and guidance on organisations, products and services out there to help you.

Join us: Living Well with Sight Loss Phone Group for residents of Worthing, West Sussex.

Where: Sight Support Worthing, 48 Rowlands Rd, Worthing, BN11 3JT

What: Covering many topics related to sight loss, with talks from ECLO, West Sussex Rehabilitation Officer, RNIB.

When: Thursday 12th and 19th May 2022, 10.30 – 3pm (Face to Face group)

This is a FREE group for West Sussex residents. It is suitable for adults of all ages, including friends, family members or anyone affected by vision loss. 

Each session covers a range of topics including:

Participants will also learn about other organisations and services that can provide support.

Book your place today!

Call the RNIB on 0303 123 9999 or visit rnib.org.uk/LivingWellWithSightLoss.

Email lwwslenquiries@rnib.org.uk if you have questions.

Any organisation is formed, influenced and representative of the people involved, and especially in the case of a people-focused charity like Sight Support Worthing. We’re planning to introduce you to a wide range of the people that make Sight Support Worthing the wonderful community it is. We’ll be chatting with members, staff, trustees and volunteers.

It’s with a volunteer that we kick the series off. Here’s Victoria, who has recently started volunteering for us.

Name: Victoria Gray

Age: 26

Where do you live: Shoreham-by-Sea

Have you always lived in the same place?

I was born in Shoreham-by-Sea and it has always been my home town, however I have also been at a residential school and college. I went away to study at New College Worcester from the age of 11 for 7 years. This is a school for the blind. After this I went to The Royal National College for the Blind for 2 years. I found it hard living away from home as I missed my family and I have always loved Shoreham-by-Sea.

How long have you been volunteering with Sight Support Worthing (SSW)?

I have only  recently started volunteering. I would like to be involved in the things that SSW do as I am totally blind myself so I feel very passionate about meeting other people with sight loss and helping to make things accessible.

What activities (whether now or pre-Covid) have you enjoyed at SSW?

SSW have recently started running Chair Yoga sessions which I have really enjoyed. Yoga is very good for relaxation and I find I get a lot out of it because I struggle a lot with my balance which makes Chair Yoga the easiest form of Yoga for me to do.

Is there an activity or social group you’d like SSW to start?

Book Group where members could come together and discuss what they are reading.

Quizzes

Walking group where we could go for a walk and maybe get a pub lunch after.

Tandem Riding

Which of SSW’s other services or support have you used?

I haven’t used any other services but this is something I would like to do and as a volunteer I would like to help in any way I can.

What do you love about living where you do?

I love the community feel. It’s nice to live somewhere where people look out for each other. I also love living by the sea.

How do you spend your free time?

Socialising with friends

Gaming

Reading

Yoga

Choir

Drama workshops

Tell us an amazing fact about yourself! 

I have recently started helping to run a book group for the RNIB. It is the first ever group that I have helped to run and it feels like a great achievement. I sometimes get a bit anxious so being able to help run a group and bring people together is such a wonderful feeling and I love being able to help people to connect with each other.

Thanks, Victoria; how brilliant it is to have you on-board as a volunteer! Victoria’s input as someone with sight loss will be of great benefit to the team as they develop services and activities for members. Look out for Victoria when the Centre reopens in the coming months.

Are you a volunteer or member of Sight Support Worthing and would like to be featured in our interviews, you can email Emily.

Of course we’re always keen to welcome new members and volunteers. Do get in touch if you’d like to find out more.