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Katie

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

Vision

Low vision awareness month and Stargardts disease

February 11, 2020
what is Stargardts disease wording and a picture of me

February is low vision awareness month. I thought this was a good opportunity to talk about my eye condition, Stargardts disease, that is taking away my precious eyesight. 

Stargardts disease is an incurable, progressive, genetic juvenile eye condition, so I have this through no fault of my own. I had regular eye tests my whole life, but nothing was ever picked up until I was 31, even though I never had 20/20 vision. Stargardts disease is caused by a fault in my Abca4 gene that means I cannot process vitamin A properly like other people can and vitamin A is not good for my eyes at all. The vitamin A causes a build-up of something called lipofuscin on my macular inside my eye. The macular is used to see fine detail such as faces, reading and writing, watching TV etc. The macular is responsible for everything you see in your central vision and when that is damaged, life starts to get difficult. Stargardts affects both men and woman equally and both eyes, but is a very rare condition, with only 1 in 12000 people having it. 

Eye Scan
Eye scan showing damage around the macular – Group of white dots around the black shadow which is the Macular.

Stargardts causes low vision, often leading to legal blindness. Blindness does not always mean just seeing black. A person with Stargardts can be classed as legally blind, but still has some useful vision to help them get around and sometimes without having to use any visual aids.

Eye Picture
Eye Picture

When I think back to my teenage years. I think I have had blind spots for a long time, but because nothing was ever picked up at my opticians appointments or flagged up, I never thought anything of what I could or couldn’t see as I thought it was how everyone saw. In my 30’s I started to realise I couldn’t see well in low lighting and started to have lots of heavy flashing in my central vision and that’s when my new opticians found my macular damage and referred me to hospital. 

I find there is such a lack of empathy surrounding vision loss. I personally think that because blindness isn’t something that makes you ill or is life limiting, people don’t understand the impact it has on your mental health and how devastating a diagnosis of incurable vision loss can be. I am in a constant state of anxiety about my vision loss progressing. Losing the ability to recognise my children and being able to drive and be independent really messes with your head some days and it’s certainly not an easy journey. Knowing you are going blind and there is nothing you can do about it is soul destroying and it is on my mind many minutes of the day, every single day of the week. I never get a break from it, because I can see all my blind spots and the constant flashing from the moment I wake up, to the moment I go to bed. 

'How I See' Example Picture
‘How I See’ Example Picture

I have tried to create a picture of how I see. This is in certain lighting, especially dim lighting and when I have to adjust to a lighting change. As you can see, this is why I don’t always recognise my own child coming out of school. I can see clearer from the very centre as I have slight foveal sparing for now, which enables me to see through my very central. I hope this gives my followers some understanding of Stargardts disease and what someone goes through who is living with it ♥️.

Lifestyle

Remembering You

February 4, 2020

Yesterday I said goodbye to my Grampa George. It was honestly one of the hardest days of my life, but something I couldn’t avoid and just had to get through it. It was a lovely day as strange as that sounds, and he would have been proud of his send off. I would do anything to have just one more conversation with him 💙, but I know that this can’t and won’t happen. 

The last few years have taught me that life can change in an instant. Nothing is ever guaranteed, and we have to try and make the best of everyday. Some days are hard for many reasons, don’t get me wrong, but we need to try and accept the bad times so that we can keep on enjoying the good ones.  

Daffodil Photo
Daffodil Photo

My Grampa always used to say to me that life is so short and that his had passed in a flash and he said the reason for that was because he was always happy with what he had, he never felt the need to compare himself to others and what they had and I think that is the best way to live. 

My eye condition eats me up inside sometimes and I often can’t help but compare myself to others, but this is a time waster, because it won’t change anything. Sometimes we completely forget the positive things in life and it’s only when something happens, that we realise just how much time we gave to the negative. I’m going to take a leaf out of my Grampa’s book and try not to compare myself to others and wonder why I am losing my eyesight, but instead embrace all of the opportunities Stargardts has given me and the friendships it has created and the shy anxious person inside of me that it brought out of its shell and keep putting one foot in front of the other.

My Grampa George xx
My Grampa George xx

I know the person rooting for me the most will be watching over me always now, with a big smile on his face knowing that I can do this, that I was strong enough for this life I have been given with vision loss 💙 sleep well George xx.

Lifestyle

You will always be in my heart, because there you are still alive 💙

January 15, 2020
Me and My Grampa George

On Thursday evening, my Grampa passed away suddenly. I will never forget the phone call from my mum. My Grampa was the only constant and consistent male relative in my life from the day I was born and was more like a dad to me 💙.

It was so much better for him to have left us the way he did, but because he left without warning, I feel like I haven’t been able to say all of the things I wanted to and I really wish Christmas Eve hadn’t been the last time I had seen him. I know by now that some things we desperately want to change, just can’t be, so there is nothing I can do now and I will just have to remember all of the lovely times we had together and that he met both of my boys and loved them both so much.

My Grandparents, Little Boys and Me x x x
My Grandparents, Little Boys and Me x x x

My Grampa George was always the one who wanted to know every detail about any eye appointments I attended and asked me all the time how I was getting on. I really appreciated those chats and I will miss them so much. I’m not religious and never really believed in heaven, but I’m hoping so much that there is one, as I can’t imagine never seeing him again 💙.

I Think I Will Miss You Caption
I Think I Will Miss You Forever Caption

I apologise if I am quiet for a while, I am hoping after the  funeral, I can get some closure and find some motivation to start blogging again, but until then, I’m just going to try and focus on all of the good times and what an amazing, positive and happy person my Grampa was and how lucky he was to be so loved and how lucky we were to have known him xx

Lifestyle

The reason why we struggle with insecurity is because we compare our behind the scenes with everyone else’s highlight reel

January 1, 2020
Me, not looking sad on the outside, but sometimes we are on the inside.

This is so true and something I struggle with a lot. New Years is one of the hardest times  for me mentally as I hate all the pressure of feeling you have to have big goals and huge dreams when in reality a big goal may just be getting out of bed and a huge dream may just be making it to the end of the week without losing it and do you know what, that is ok. New year is also a reminder of another year gone where my vision is declining, and it scares me.

Someone asked me the other day how I stay so positive whilst losing my eyesight and the thing is, I’m not always positive. I cried this morning because I felt useless and upset that it’s me going blind, yet I got dressed,  did my makeup, put a smile on and posted my Instagram stories and nowhere in those stories of mine would anybody realise how down I have been because we don’t post pictures of ourselves crying. It’s easy to post a picture of a smile, but it’s harder to post the true reality of sadness and my picture just proves that. Don’t live your life by comparing it to others online, it is a joy stealer and I will try not to do the same. Maybe that should be my New Years resolution ♥️.

Lifestyle Publications Vision

Northamptonshire Food and Drink Awards 2019

November 12, 2019
A picture of me with my blu light blocker glasses on.

Purple Tuesday

With today being purple Tuesday, I thought it would be a good day to discuss what I have been invited to on Thursday evening, but first here is a bit about today 💜.

Purple Tuesday is a day that makes customer facing businesses more aware and is to inspire them to improve a disabled persons customer experience when shopping with them. By a company making just one positive change to their business for accessibility, it will create a wider audience and shows that they are an advocate for equality. Equality is so important so that everyone can feel accepted and catered for, so this leads me to the event I am attending Thursday. 

Purple Tuesday Logo
Purple Tuesday Logo

Northamptonshire Food and Drink Awards 2019

On Thursday, I have kindly been invited by NAB – my local sight loss support charity, to attend the Northamptonshire food and drinks awards ceremony, that will be taking place at the Royal and Derngate. This awards ceremony is to celebrate all that is great about local food and drink and recognising excellence within the culinary sector of Northamptonshire.

For the first time ever, NAB will be presenting the ‘Dining for all’ award and I will be with them to represent young people with vision loss in Northamptonshire. The ‘dining for all’ award will be presented to the venue from among the category finalists which excels in its service for those with sight and hearing difficulties. This award will enable the visually impaired, blind and deaf members of our society, to know exactly where they will be catered for when choosing to dine out. It’s for the eateries that went above and beyond to enable these people to have the best experience when choosing to eat out, an experience that should be as enjoyable as anybody else’s.

northamptonshire food and drink awards logo.
Northamptonshire Food and Drink Awards Logo

Things that were noted when deciding who should win this award were simple things like, is the menu available online to enable the visually impaired to browse and choose their meal beforehand using a screen reader? Staff explaining where the food is placed on their plate or where they’re drink is placed at the table? Staff asking how they can assist individuals with low vision or who are hard or hearing. Simple things that can make a big difference to that individuals dining experience.  

So, make sure to follow my stories on Instagram on Thursday night to find out who won this fantastic award and to find out who goes above and beyond, to make all of our dining experiences as stress free as possible. I’m really excited to be a part of this amazing evening and especially excited to find out who wins the ‘dining for all’ award. I look forward to sharing the results with you all soon! And don’t worry, if you aren’t on Instagram as I will be writing a follow up blog post all about my evening after the event for anyone who is interested ♥️.

Vision

World Sight Day 2019

October 10, 2019
World Site Day 2019 - Me with my sunglasses on.

Today is world sight day and ironically mental health awareness day too. As most of you know, I was diagnosed with Stargardts 2 years ago. Unfortunately, there is nothing that can be done for my eye disease, no treatment and as of yet, no cure. I have in those 2 years, lost 2 lines of the eye chart in both eyes and am only just hanging on to my driving licence. Stargardts is robbing me slowly of not only my eyesight, but of my independence.

World Sight Day Image 2019
World Sight Day Image 2019

This has obviously had a massive impact on my mental health. I take steps every day to try and keep my anxiety at bay. A long daily walk, taking time out to breathe, eating properly and getting as much sleep as I can (which isn’t easy with a baby) if I don’t do these, then my vision will wander into my main focus. Blogging has been very freeing for me; it allows me to write down my thoughts and feelings and know that I am not alone in this disease.

World Mental Health Day Image 2019
World Mental Health Day Image 2019

My Stargardts is rare and incurable, but so many eye conditions aren’t, and the majority are fixable and treatable. People often ask me why I bother to tell people to get their eyes checked, when one eye test changed my whole life, but that is because I was unlucky, but so many people aren’t and the sooner a condition is detected, the sooner it can be treated and vision loss could be prevented. If someone doesn’t have to walk the path I am having to, then I will continue to urge anyone reading this to go and get their eyes checked to protect their eyesight, including your children too. I would do absolutely anything if I could to protect mine, but I can’t, so for now I will just continue wearing the biggest oversized sunglasses I can find, to protect my already failing eyes as much as I can and ask you all to get your eyes checked. Your eyesight really does matter ♥️.

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