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Health

Mental Health Awareness Week 2022: loneliness after sight loss

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.

 

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Our aims

Help us shape our wellbeing services

One of SSW’s key objectives is to ensure the wellbeing of our members and their close family and carers. We are currently exploring the feasibility of two new services and would hugely appreciate your feedback on each of the ideas.

We have a short survey (should take around 3-5 minutes depending on your feedback) looking at a talking therapy service and a volunteer matching (‘buddy’) scheme. 

Click here to access the survey. If you would rather complete a paper version please contact us.

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News Our aims

SSW EGM April 2022 outcome

The SSW Board set up an Extraordinary General Meeting (EGM) on 5th April to propose a change to the Constitution aimed at enabling SSW to respond to requests for help from those who live outside the Borough of Worthing.

Currently, the Constitution is worded as follows:

3. The Charity’s objects (“the Objects”) are the relief of persons who are blind or partially sighted living within the boundaries of the Borough of Worthing.

The Board’s Resolution was designed to enable SSW to respond to requests for advice and support from those living outside the Borough of Worthing.

The proposed new wording was as follows – bold indicates the changes:

3. The Charity’s primary objects (“the Objects”) are the relief of persons who are blind or partially sighted living within the boundaries of the Borough of Worthing. For those living outside the Borough of Worthing, the Charity will respond to and endeavour to address all requests for advice and support including access to the Charity’s Worthing Centre where that is practical.

At the EGM, the SSW Chairman outlined the rationale behind the SSW Board’s proposal which was to enable SSW to legitimately support anyone with a visual impairment, regardless of their place of residence. Currently, such support was limited to residents of the Borough of Worthing.

The Chairman assured the EGM that Approval of this Resolution would not impact the level of support and service provided to SSW members as priority would always be given to SSW members – and formal Membership of SSW would continue to be limited to residents of the Borough of Worthing.

However, being able to use the skills and experience developed within SSW to help a wider community, together with the feedback we get from that community, will ultimately benefit everyone and help sustain SSW as a viable local charity for the future.

Given that much of what SSW does is published and made available via the Internet, this attracts the attention of a much wider audience than just Worthing residents. When enquires for advice and/or help come from the visually impaired (or their family member/guardian) living outside the Borough of Worthing, SSW wants to be able to provide a constructive response. It does not seem fair that we should be restricted in offering such help just because someone does not live in the Borough of Worthing.

The following questions were raised by Members at the EGM:

1. Could the existing staff levels cope with the likely increase in requests for information and help without impacting the support currently given to SSW Members?

The Chairman assured Members that as set out in the new wording of SSW’s scope, SSW Members (by definition, Worthing residents) would be the charity’s “primary” commitment. If the increased demand for information from those living outside Worthing started to impact the available support for SSW Members, then the Board would look to increase the level of resource available to SSW.

2. Does SSW have the funds to increase the level of support that would potentially be required to meet the additional demand from people who would not be SSW Members?

The Chairman assured the Meeting that there were sufficient funds available to support an increase in resource should that prove necessary.

3. Is it possible to recruit the right numbers/calibre of staff?

The Chairman believed that based on recent experience (where a number of new staff members had been recruited) there is evidence to suggest that recruitment is not a significant problem.

The EGM then voted unanimously in favour of the Board’s Resolution.

Moving forward, SSW can establish itself as a charity fully supporting the visually impaired, wherever they may live.

Categories
Advice technology

2 factor authentication: keeping your data safe

by Chris Green, Tech Advisor

We’ve all encountered individuals that have attempted to gain sensitive information from us to commit fraudulent activity.  You will have received calls from people pretending to be your internet/telephone provider, bank or maybe even Amazon.  They all have one task in mind which is to extract that valuable data from you.  This could be conducted over several different calls to build trust and acceptance that you are speaking to who they say they are.  

An important thing to remember is that companies (including your bank and utility providers) will very rarely contact you over the phone.  You should never feel pressurized to reveal any information over the phone.  Here’s what some of these organizations say:

Santander

Anyone can be easily impersonated, and criminals can make the caller ID, email address or name look exactly like the genuine caller. So, if you receive an email, text or call, verify it’s genuine by phoning them back on a known and trusted number.

Amazon

Amazon will never ask for payment or offer you a refund you do not expect.

BT

If the caller sounds urgent or threatening, they ask for remote access to your computer, they ask for personal details, passwords or bank details then hang up. 

If the above sounds familiar and you fear you may have revealed personal information to a stranger then you can take some steps to protect yourself.  

  1. Change your email account password first
  2. Change all other passwords (this should be done regularly to maintain security) 
  3. Ensure that your contact details are correct for these accounts, especially your mobile phone/home number and backup email address (if you have one)
  4. Enable 2-factor authentication where possible

photo of a lady sat at a desk looking at things on a laptop with her smart phone nearby

 

What is 2-factor authentication?

The phrase ‘2-factor authentication’ sounds complex to many users. Chances are you have already used it in some way, but didn’t know it was called that. You might also hear it called “multi-factor authentication” or “2 step verification”.

Basically, it means that before you can access some services, you need to provide two different pieces of information. Examples might include:

Authentication types

Examples

Something you know

account name, passwordemail account

Something in your possession

security key, application, code

Some physical attribute

fingerprint, facial recognition

This means that if someone has managed to gain your password then they would also need your device or a fingerprint to get any further making it highly unlikely they can successfully complete both two steps. 

If you’d like to activate 2-step verification on your devices, or would like to have a chat about how to best manage the security of your data then please get in touch with one of our tech advisors.  

 

Categories
News

Visual stress: what is it?

Have you ever heard of a condition called visual stress? It might sound like it’s to do with tired eyes from too much screen time, but actually it’s not related to eye function at all.

SSW Manager Sonia became aware of differences in her vision in her late thirties. But, as everyone’s eyesight is unique to them, it was difficult for her to ascertain if everyone’s sight was like hers

It was years before Sonia began to investigate as, fortunately for her, it wasn’t (and doesn’t now) interfering significantly with her ability to read. She said: “I’ve always struggled with glare and needed sunglasses throughout the year but since my late 30’s I’ve noticed that my field of vision fluctuates with blotchy or grainy interference. Depending on how bad it is, I can forget about it, but sometimes it can be a real nuisance and distraction.”

photo of a selection of coloured glasses in a storage rack
The coloured filters used to test someone who may have visual stress

Sonia made an appointment to have a Colorimetry test and, following this, the Optometrist confirmed she suffers from visual stress. The test involves reading a paragraph of repetitive words with different coloured lenses and timing the reading speed. There are so many different colour variations, so the process involves narrowing down by choosing between types of colour and then shades.

So what is visual stress?

Visual stress, sometimes referred to as Meares-Irlen or Irlen syndrome, is a neurological perceptual processing disorder. Lines of text are rather like a striped pattern. When some people look at black and white stripes of specific width and spacing, it causes visual distortions and illusions. Thes edistortions are due to hyper-excitability in the part of the brain known as the visual cortex. It is thought that when some people try to read, the ‘stripy’ effect of the lines of print cause symptoms affecting their ability to read the text. There appears to be a link between visual stress and Dyslexia, though you can have either without the other.

photo shows two examples of distorted text
Examples of how text can look for someone with visual stress / Irlen syndrome

What are the symptoms of visual stress?

  • Headaches, eyestrain
  • Blurring of print
  • Words moving and appearing to jump out of the page
  • Colours in the text
  • Glare, page too bright
  • Losing place, skipping words or lines
  • Poor understanding of text being read

How can I get tested?

Unfortunately, Colorimetry testing at this time is not available on the NHS and specialist optometrists are not widely found. For West Sussex residents, Sonia recommends Forbes Eyecare Ltd in Chichester. If you live further afield, try the Cerium Visual Technologies website where you can search for a specialist in your area.

Feel free to get in touch with SSW if you’d like to chat with Sonia or any of the team about your visual condition.

Categories
Health

Sun Awareness Week: eye health

As we start to enjoy the arrival of Spring with any luck the sun will start shining through and give us warmer weather to enjoy the longer days.

We’re all looking forward to shedding the winter layers and reaching for the sun cream to protect our skin from UVA and UVB rays from the sun. 

One thing we may not consider is the damage those same rays can do to our eyes. It is important to start wearing proper eye protection at an early age to shield your eyes from years of ultraviolet exposure. The damage caused can take years to materialise and, by the time we notice the damage, it is often too late to reverse the effects. 

Some of the conditions caused by UVA and UVB rays are: 

  • Cataracts:  The most common cause of treatable sight loss and blindness, cataracts cloud and yellow the lens of your eye, causing progressive vision loss. 
  • Macular degeneration:  A major cause of vision loss for people over age 60, macular degeneration is caused by cumulative UV damage to the central portion of the retina, the back layer inside each eye that records what we see and sends it to your brain. 
  • Keratitis, or corneal sunburn: UV exposure can cause painful burning of the cornea, the clear surface that admits light and images to the retina. Also known as “snowblindness”, this condition occurs in skiers and hikers because of the sun’s intensity at altitudes and its reflective nature off water, snow and ice. 
  • Conjunctival cancers: although rare, these eye cancers are increasing, especially among older people. 

The best way to protect your eyes in the sun would be to avoid direct exposure although, even in this country, this can be quite difficult. You can wear sunglasses that block UVA and UVB rays; any reputable company will have this as standard. Prescription glasses can include a polarising tint that offers protection too. Hats with a good sized brim will provide shade for your eyes and the skin around them. Being aware of your surroundings and weather changes is great too as with cloud cover we often forget that harmful rays can still get through. Crucially bear in mind that, even if it is not hot in the sun, damage can still happen. 

SSW has Cocoon branded sunglasses available in the centre for £45 (RRP £59.99). Get in touch if you’d like to know more.

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News

SSW awarded grant for Platinum Jubilee Community Art Project

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

Categories
News

Congratulations to Brian Butcher

Recipient of a Highly Commended Award in the RNIB Seeing Differently Awards 2022

We are pleased to announce that Brian Butcher, SSW member and Trustee, is the proud recipient of a Highly Commended Award in the RNIB’s annual Seeing Differently Awards. Congratulations to Brian!

Brian received the award for his campaigning to make the lives of blind and partially sighted people in Worthing and West Sussex better. Through his lobbying and awareness raising, Brian has helped change the way transport companies, business owners and local politicians consider the needs of the blind and partially sighted community.

What an achievement! We are very proud to have Brian as part of our team here.

As well as his involvement with SSW Brian is a Community Connection Lead Volunteer, with RNIB, a Campaign Volunteer for Guide Dogs as well as a NHS Vaccination champion.

Categories
Health

Eye health: dry eyes

Dry eyes is a fairly common condition and it occurs when there’s a problem with the tear production process or with the quality or quantity of tears produced. Women are twice as likely to suffer with this ailment.

Symptoms include:

  • Sore or gritty eyes.
  • Dry or burning eyes.
  • Blurred vision that improves after blinking.
  • Watery eyes (this occurs because the eye tries to produce more tears to relieve the dryness)

The most common causes are:

  • Hormonal changes, such as during pregnancy, menopause or when using the contraceptive pill.
  • Environmental factors, such as too much sun, wind or heat.
  • Activities that can either strain the eyes by making you stare more or reduce your blink rate, such as reading, writing or using the computer for prolonged periods of time.
  • Medicines, which include some antidepressants, antihistamines, and certain blood pressure-lowering medicines (diuretics and beta-blockers)
  • Using contact lenses.
  • Recent laser eye surgery.
  • Medical conditions such as Bell’s palsy, Sjögren’s syndrome, rheumatoid arthritis and lupus.

If left untreated some complications can occur such as

  • Conjunctivitis, which is an infection of the eye and may need antibiotics to resolve
  • Keratitis, which is an inflammation of the cornea, which, again, may need antibiotics, prescription eye drops or anti-viral medicine.

The good news is dry eyes are easy to manage. Here’s a few ways you can reduce the effects of dry eyes:

  • Keep yourself hydrated and drink plenty of water.
  • Try an over the counter product that’s designed to alleviate dry eye symptoms, like artificial tears or lubricating eye drops.
  • Keep your eyelids and eyelashes clean by gently cleaning them.
  • Omega-3 may help to ease symptoms but this has not been proven. It can be found in oily fish and plant-based sources like walnuts and rapeseed oil.

If you are at all concerned you can speak to a pharmacist, optician or the health professionals in the eye clinic who will be able to advise you on the best treatment for you.

Categories
Interview

Knowing me, knowing SSW: James Langley, Events Coordinator

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

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