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Macular Week 2020

June 22, 2020
Me wearing a blindness is a spectrum t shirt with my hair and makeup done.

This week is macular week. Nearly 1.5 million people in the UK alone are affected by macular disease, I am one of them. 

Picture of an eye ball with the macular part saying hows your macula?
Hows your macula?

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.

me wearing a black t shirt, my eyes are closed and i have my hair and make up done.
Me with my hair and makeup done and eyes closed.

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 ♥️.

Health and Beauty Vision

A glimpse into chronic life, by COVID-19

March 16, 2020

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.

Beautiful Sea and Sandy Beach - A Dream Holiday Destination For Many
Beautiful Sea and Sandy Beach – A Dream Holiday Destination For Many

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.

Support Wording
Support Wording

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 ♥️.

Health and Beauty Lifestyle Vision

Behind The Smile

February 17, 2020
Smile

“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.

Be Kind Text Quote
Be Kind Text Quote

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 mistake.

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 ♥️.

For anyone who may need some support x

*Samaritans charity – https://www.samaritans.org

Mind – https://www.mind.org.uk

Anxiety U.K. – https://www.anxietyuk.org.uk

SANE – http://www.sane.org.uk

Lifestyle Vision

My Thoughts and Feelings

March 15, 2019
A photo of me with my makeup done

I have thought long and hard about posting this blog post and then I thought that at the end of the day, I use this to get my thoughts and feelings down and my thoughts and feelings are valid. It’s not my intention to offend anyone, just to give my opinion. 

My Moorfields appointment is coming up soon and I can’t even express the anxiety and worry that this has created inside of me. I have been crying at the drop of hat, yet people seem to suggest it is my pregnancy hormones. This is my exact point about the lack of understanding when you are dealing with progressive vision loss. If you are reading this and not going through vision loss, put yourself in the position of someone who is. You know at your appointment, you are not miraculously going to be told that your vision is suddenly better and your disease has magically disappeared, you are going to find out that possibly the disease or condition has stabilised, but more likely, it has progressed, especially the stage that I was at when diagnosed. Then you sit there and try and work out letters on a chart that you may not be able to see anymore and feel the heartache that comes with that and then imagine having to sit there and find out if you are still able to drive, that there is a possibility that your independence is going to be ripped from you in seconds. No more running errands, little trips to the shops unaccompanied, time out for yourself having the freedom to go and do just what you please, that no longer exists. Even if you are lucky and keep your licence, you understand it’s only a matter of time before it goes. Well-meaning people telling you they will take you places if you need it and then the time comes and you don’t fit in with their schedule or they have their own busy lives to attend to, so you are stuck trying to work round bus timetables if you are brave enough as you have never had to use them before and can’t even see what they say. The stress of dealing with public transport when you struggle to even see your own face in a mirror and then this is where I get confused and what has been playing on my mind. The same people who avoided me and said nothing after my diagnosis of Stargardts, congratulated me on being pregnant. Why do we find it so easy to talk about the good stuff but never the bad? What makes people feel so uncomfortable that they feel they can’t discuss something in your life that impacts you on a daily basis? 

A picture of Moorfields Eye Hospital Building
Moorfields Eye Hospital

I can guarantee when my baby arrives, people will want to come around, people will offer you help, people will offer to have the baby whilst you sleep, to pop and see you in the day. Greg will get two weeks paternity leave from work to spend time with me and the baby, give us support when everything is new again. I will have a health visitor come around to discuss any concerns. This is the sort of support I needed after my optician discovered my disease, the support I needed after my diagnosis at Moorfields, the support I need on the run up to my appointments. I couldn’t function properly from being in a state of fear after my local hospital suggested I had Stargardts and was going blind. The next day everyone was back at work and I was sat on my own having to deal with what was inside my head. There was no support offered to me from the hospital, just left to deal with my new life. And then we are left wondering why so many people with vision loss or blindness are left with depression and anxiety? If my appointment in a few weeks’ time was an operation, people would more likely discuss it, wish us well, give support after, because an operation leaves something visible, something others can see that indicates we are hurting and in pain. Vision loss doesn’t do that.

I feel there is a massive lack of support for people losing their eyesight between the ages of 25 and 50. There seems to be very little out there for us. When my baby is here there are plenty of baby groups I can go to, to meet others and discuss parenting problems, but there is nowhere for me locally to go and meet up with people my own age and discuss my vision loss. I know this is because we are in the minority and there aren’t many of us dealing with this, but something would be nice all the same.

Me and my son rock pooling x
Me and my son rock pooling x

We hear countless times how many people overuse social media too, articles about people sat on their phones too often and not paying attention to people in actual life. Well the support I have found online has been immeasurable. People online know more about my thoughts and feelings than the majority of people in my daily life, because they talk to me. They ask me how the run up to my appointment is going, people I have never even met take the time to ask me and sometimes that is all that is needed to offload some of your scary thoughts. I honestly don’t know how I would cope without support I gain from my phone. We have become a society of well-wishers but shy away from other people’s problems. Maybe we are all under so much pressure in this day and age, it’s just easier to deal with our own issues, maybe we are more open when we talk online, but quite often for people, social media is a big support network and shouldn’t be belittled.

I apologise that this post is quite negative for me, but some days I feel angry inside at the lack of understanding and interaction I get about Stargardts. I honestly don’t want it to be my topic of conversation daily, far from it, that is not what this post is for at all, but since becoming pregnant it has made me realise just how much others struggle to discuss it and if I am honest, it disappoints me greatly. We don’t need full blown support through the good times we need it a lot more through the bad and scary times. I am used to waking up in the night without being able to get back to sleep and feeling so overwhelmed I don’t feel I can do something, but Stargardts has done that to me, a new born baby will be a blessing. It certainly won’t be as difficult as discovering that one day you won’t even be able to recognise your own children in front of you, now that is the hardest part of this journey.

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