This is a difficult post to write, but one I feel needs addressing. I often don’t feel like I fit in to the community that I’m meant to be a part of. I don’t use a cane or have a guide dog and it has also been suggested that I’m lucky I’m only losing my central vision. I also feel I’m often invalidated because I got my sight loss later in life and that I have been able to do certain things that others were not. Ableism is always spoken about from people who aren’t in the disabled community, but internalised ableism can happen within the community too and I often find this harder to swallow.
It doesn’t matter that my journey through sight loss has been different to someone else’s, or that I have been able to do things someone else hasn’t, like drive a car. This doesn’t take away my experience and what I am going through and it also shouldn’t make others feel like I can’t tell my story. Sight loss is not a competition and it saddens me that acceptance is sometimes based on the sight you have and not the journey you are going on. I just want people to know that it doesn’t matter when your sight loss journey started, how quickly your sight loss progressed, what visual or mobility aids you use or what you can see, your journey is your journey and it is as valid and real as anyone else’s ♥️. Thank you to everyone who supports my journey, I would be lost without you xx
This is something that I get asked a lot. “Can glasses help with your eyesight?” The short answer to this is no. My eye condition (stargardts) is a genetic disease that causes a build up of something called lipofuscin on my macular. This is simply because, unlike the rest of the population, vitamin A which is good for the eyes, is actually toxic to mine. It is this that causes the damage to my retina (see picture below).
Glasses help correct people’s eyesight by allowing eyes to focus light on the right spot of the retina. This cannot happen in parts of the retina that are damaged and vision is being or has been lost as no light can pass through.
With my eye condition, it is central vision loss, so I still have clear and useful peripheral (side vision). Some people choose to wear glasses to aid their peripheral vision only, but this will not correct any of the central vision. As time goes by and the central vision declines, glasses for the peripheral vision man also stop being useful.
As you can see in my picture, I have glasses on with an orange lens. These (other than sunglasses) are the only glasses I use regularly, but they aren’t for correction, they are blue light blockers and have full UV protection for when I am using a screen, or lights are too bright for me and on cloudy days where sunglasses are too dark.
I hope this helps people underhand a little bit more about sight loss and blindness and why we cannot just fix this with a simple pair of glasses.
This week is macular week. Nearly 1.5 million people in the UK alone are affected by macular disease, I am one of them.
Stargardts disease, the condition I have is genetic. I have a fault in my genes that prevents me from being able to process vitamin A and it is this that causes the damage to my macular. Although my type of macular disease is rare, 1 in 10 people reading this, will be diagnosed with macular degeneration by the time they are 65. Macular disease and Age-related macular degeneration cause a complete loss of central vision over time and this loss of central vision can make life very difficult. Our central vision is our fine detail vision, our reading and writing vision, our vision to recognise loved ones and children, to drive, cook and watch tv. These are just some of the things that our central vision is needed for.
Imagine not being able to see anything directly in front of you. You can’t look around the blind spot that macular degeneration causes, or to the side; above or below it because it moves with your eyes. Living with a progressive eye condition can be very stressful and not knowing how quick your vision loss will progress can cause a lot of anxiety. People don’t really think about the impact of vision loss if it isn’t something that affects them and also because it’s not life threatening, eye charities sometimes get forgotten. Please consider eye charities in the future, as I can’t put into words the impact losing your eyesight can have on someone. I also urge everyone to protect their eyes to the absolute maximum. Wear your sunglasses outside, get regular check-ups at the opticians and be mindful of how you treat your eyes. Every day I wish that there was something to stop my progression, I want to see my boys grow up forever, I don’t want others to be in my situation if they don’t have to be ♥️.
COVID-19, I think everyone knows what
it is by now and is feeling the effects of this highly contagious virus. People
have lost holidays from the travel bans and others are worrying about loss of
earnings and having to self-isolate. Our freedom of movement is being
compromised and many aren’t dealing with the restrictions very easily.
Hopefully all of this will be over in a
few months, but imagine if this was actually your life day in day out, forever.
So many disabled people, people with
chronic illness and the blind to name just a couple, live in isolation and fear
every single day. Too poorly to get out of bed, some people with chronic
illness spend weeks isolated at home on their own, not able to socialise with
others, plan holidays and have a constant worry about a lack of income. People
diagnosed with vision loss don’t know if they will be out of a job once their
vision progresses and are often trapped at home due to not being able to drive
and having nobody around them to support them and take them shopping or to
appointments. Some days too anxious to leave their house in case they can’t
read the bus number or be able to navigate where they are going.
Now imagine you have booked your dream holiday and you are so excited, but the week before you have a big relapse and are too poorly to go, not the first time this has happened and you know there is very little point in re-booking. You then spend the next few weeks lying in bed in isolation, dreaming of the holiday that could have been and wishing so much that you were like everyone else and had all your freedom.
Imagine having to cancel going to your
best friend’s wedding because you feel too anxious to stand in a crowd of
people you don’t know for fear of feeing disorientated and unable to recognise
faces and worrying that you are going to make fool of yourself because your
vision has become so bad. Having to cancel a meal out with your partner because
there is no wheelchair access. the list goes on.
Luckily for the majority of people the situation
right now of cancelled plans will be temporary, but for many, it’s just what
they are used to.
Unfortunately, during this crisis, it’s the vulnerable yet again, that are suffering the most. This virus has bought out the selfish in some people who are stock piling extortionate amounts of essential items such as dried and tinned foods, toiletries, baby items and special dietary foods. People are taking up delivery slots that a lot of disabled people rely on to be able to eat weekly. Shopping in chaos when you are blind or have sensory issues can be distressing and some people are only thinking about themselves through all of this.
At this present moment, we need to pull
together, support the vulnerable and check up on those who may be finding this
harder than others. It will also be a time that may highlight severe anxiety in
some. Instead of being selfish we need to support each other, we need to be
kind and thoughtful. Lend a helping hand where it is needed, but also remember,
when this has all died down and everyone else carries on with the life that
they are used to, please don’t forget the vulnerable, it’s not just during this
time that they may need your support or help, they may suffer in silence more
than you have ever been aware of before ♥️.
“It’s not always the tears that measure the pain. Sometimes it’s the smile we fake”.
Most people will have heard by now of the tragic death of
Caroline Flack ♥️ the woman who seemed to have the perfect life and
the brightest smile. We seem to assume that if someone appears happy on the
surface and especially on social media, then all must be ok.
It’s so very easy to hide behind a smile, a smile is easy to
fake. When people ask, “how are you”, the simplest reply is “ok thank you”. How
many of us have done this, when inside we are really holding back the tears?
Through my time of having severe anxiety and panic attacks in the past, I have
felt that desperation and wondering of how I can go on when I was having
several distressing panic attacks daily and then again when I was diagnosed
with Stargardts. Without support, which thankfully I had, I can honestly see
how things could get too much for someone to bear and how the darkness can take
over your thoughts.
I don’t know what’s happened to society of late, but when
someone in the public eye appears vulnerable or makes a mistake like the rest
of us do every day, the British media and trolls seem to attack that Person
relentlessly. People forget they are a real human being, who has feelings,
hopes and dreams, and when someone is feeling vulnerable, those vicious words
day in and day out can destroy any ounce of self-worth they ever had.
The sad fact is most of these trolls are brave because they
sit behind a keyboard and I guarantee the majority would not say anything to
that person they are hounding in real life. I am not a celebrity, but some of
the things I have had said to me on social media about my vision loss, is
awful, but luckily I am in a good place and I just let it go, but I think these
people need to be held accountable for their actions.
The British media also need to take a long, hard look at the
way they report and the whole innocent until proven guilty needs to be put into
practice and details need to be kept private until someone is charged for their
My point of this post is just to remind people that kindness
really is everything. If you have nothing nice to say, just say nothing at all.
Spreading hate and sadness is such a waste of time and can have catastrophic
consequences. If you are trolling people because you are unhappy in your own
life, please seek help because this behaviour is destructive, and it costs
lives. A reminder to everyone else is when you ask a friend how they are and
they reply, “Ok thank you”, ask them again and see how they are truly feeling,
you may be surprised at their answer ♥️.
holiday has sadly come to an end, but we have made some wonderful memories 💙.
don’t know if it’s because I wasn’t at home with my usual routine and things I
am used to every day, but I really did notice my vision loss whilst I was away.
Watching seagulls fly in and out of my blind spots, trying to look for the seal
whilst everyone else was already watching him bob around the harbour, trying to
work out which was my husband and Harvey body boarding only being able to go by
their movements and mannerisms that I am used to, to pick them out of the
crowd, struggling to see creatures in the rock pools, just lots of little
things like this. The one thing that really bothered me was when Greg was
poorly and Harvey, Sawyer and I went out to the beach on our own in the
evenings. It took me a long time to focus on anything and I could barely make
out the steps down to the beach which frightened me a bit as they were
extremely steep. I felt a lack of confidence in myself, but I didn’t let it
show to Harvey and I carried on making memories regardless.
holiday has made me realise though how visual life is. A lot of our holiday
chat was things we could see or what we had seen, and this has panicked me a
lot. It has made me think about what I will miss out on when my vision gets
worse and will I get left behind? Will people remember to talk to me about
other things or have enough patience to explain things in more detail? Whatever
happens in the future, I just want people to know that this world is
intimidating when your vision starts to fade and that all of us with vision
loss are just trying our best to carry on living but may just need a little
more patience and a little bit more of your time to help us enjoy this life
with you ❤️.