New sunnies!

12 Apr

Aw wow my Dad bought me a pair of Oakley Polaroid Sun glasses today.
We’re in Austria Skiing and the first two day’s I was very hesitant on the slopes.
Bless my Dad he’s bought a really bright orange outfit so I can follow him down…. he says he feels a bit conscious as it’s very “out there” but it’s great for me!
I was really struggling with my eyes so we decided to try some new glasses.
They were expensive but I swear to god they make everything so much sharper.
We’ve found an area in Austria thats super quiet for skiing so we always take our time when other skiers are knocking about and then go for it when it’s clear!I love it!!
Have a look at my Instagram kayleyrose88 for a few clips.!
Here’s a few pics of the holiday and my blue Sun glasses!!!
Hahah defo getting in the swing of the

visually impared changes we have to make!
Have a top week people ♡

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Pretty Mermaid!

31 Mar

Been working on this Mermaid today!
It started as a love heart and as I walked back into the room it looked like a pair of boobs. ..I thought oo that’d be a good mermaid!
I love bold, vibrant colours … the brighter the better for me.  I don’t know if this has something to do with Stargardt’s.

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ething to do with #stargardts maybe!
Anywyay!
Hope you like!

Amazing friend

29 Mar

https://www.justgiving.com/Jessica-Gillis

My friend Jess is climbing the THREE PEAKS to raise money for the Macular Society.
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Please share with family and friends and let’s raise some amazing £££ for a brilliant cause

Three years ago I lost three stone unable to eat with such worry of what the future held for me.
I couldn’t find the words to talk to my family about what was happening to me nor friends as I felt no one understood….. being no cure for my eye Condition I needed to deal with this head on.

Under my smiles I felt broken.

My outlook from being diagnosed with Stargardt’s age 17 was positive ..”i can I will…” “every cloud” etc..

I was in Denile and when I faced up and came to realisation my eye sight was deteriorating and I needed help accepting a d moving forward.
I remember walking my dog and crying down the street I lived In..saddened i was 20 odd wearing Sunglasses on a miserable day…missing the simple things of saying hello to a familiar face..neighbours and just seeing a friendly face…
I woukd recognise people By tbey’re dogs… if people stopped to let the dogs have a hello I’d think o yeah that’s the lady with the white dog etc. .. . It’s crazy really.
I had moved away from my parents home so i only knew a handful of people in the area….
I felt really alone at this time..almost in my own world.
I googled helplines and came across the Macular Society
I dialled the number…At first I couldn’t talk I was so upset..i put the phone down…
The lady rang me back …
We discussed what was hapoening and I had 8 weeks of one hour councillor sessions over the phone.
This honestley transformed my life
The lady set me goals..we talked about all my concerns for the future
She explained it was almost like grieving my old life…..
This really helped me to accept my condition and to work on what I had from that day forward
She told me to see things from the prospective if it was the other way round and smeone told me they were going blind how would react.
Of course I would want to help. ..I wouldn’t judge…I wouldn’t think they were less of a person. ..
I would want to help in any way that was nesesary.

I can’t thank the Macular society for this.
This really helped me turn a massive corner in my life…I am fine with telling people about my visual impared enter now and have much more confidence in using equipment to her by.

I can’t thank Jess enough for raiding awareness of this cause…it means so much to me, it neans so much to you if that makes sense.
I find it crazy and we have talked about this… I’ve known jess 26 years of my nearly 28 years .. I was diagnosed with this Condition 10 years ago.
I can’t imagine being the friend that Jess is to me, if the shoe was on the other foot. It put in a lump in my throat to think of a friends eye sight deteriorating and being so strong for them…
I can’t really distinguish mo ney anymore…she will pick out the coins for me ….
I point blank can’t read a menu at a restraint…I have a magnifyer on my phone but jess will always just say soo what do you fancy….there’s this this n this. .
She will pick me up .. drop me off …listen to me…. have nights in…have nights
out….motivate me… send me links on the I tenet to make my life easier.
She helped me with the studio decorating… she’s advised me…. she’s wiped my tears, made me laugh and laughed at my jokes.
I just want you to know I appreciate this so much and thankyou for making my life so much easier when im in your presence Xxxxx
…if your reading this Thank your for your friendship o
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When we were little!
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As we grow!
And finally Jess training!!!!!! #dedication
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Don’t be afraid to be blind! Be blind, bold, persue your dreams and why not be proud

29 Mar

Hello!
Hope all is well in the world!
A little update from last time!
I really do believe with hard work, determination and a little self belief you can achieve whatever you want to do in life… dispute our situation… if you out your kind to it you will succeed.
The past few years have been up and down and don’t get me wrong I have felt some rejection but you know what I am so glad now
If this rejection didn’t happen to me I wouldn’t be so motivated to make things work for myself… I fell now I am where I am supposed to be whether I had stargarts or not…I fell I’ve found my fortay!
I love art and so believe it’s my therapy..I get lost in the colours and can’t quite believe I’m selling my work.i feel I have a purpose and have a space that is my own surrounded by metalic’s, shimmer the brightest colours and the whitest canvas’ to go and attack!!!
No matter what you want to do career wise please don’t let this disease beat you.
Yes we take longer to do things, it’s a struggle but the sense of achievement makes the hard work worth it.
The extra challenges we face I see now as and game that I have to complete!
There is and ways a way rou d things.
Forget stigmas and all the rest of it. We are equally if not more valuable to the world…. we have understanding, empathy if others … believe in yourself and push yourself
I’m only saying this as all of a sudden I find my self in a place where about a month ago I took the plunge and began renting my own art stdio space!
When I first got jt I hated the wall paper ha it qas wreck the feng shui…..I painted white emulsion over r the wallpaper ..it began peeling off …it stripped it..there was mould I cleaned and re pai Ted. ..it’s now fresh space!
I believe so much in art therapy… Honestly you could get a little art set of £10…have a go…it’s gare tee you will be sent ro a other world of distraction ha j sound mad but try it and see…. excuse the pun …
If you do I would love to see any pics…I’m really interested in how other v.i folk see …paint what you see…do anything…I’m excited!
I feel very proud! Ive been using my iPad to zoom in on animals and tried some realistic animal portraits!
According to the photos when I zoom back in onto painting they’re working g out well.
I don’t know how .. just paint what I see…I have to zoom into each part of th3 animal and scale it back down onto the page!
It proves difficult from time to time and can be disastrous but hey .God loves a tryer.Ha… And did i mention time consuming ha. I love it though…
I did not know I was a slight perfectionist but i can work on my

Continue reading

I hope this works!!! #stargardts #blind #visuallyimparedartist #visuallyimpated #allyoucandoisonesbest #maculardegeneration #macularprobs #artist

7 Sep

  

Be as bold as a peacock

 All painting painted over the last few months! 
     
    its been a very long time!Hello again!… (If this doesn’t quite flow I do apologise I will go through tomorrow just a bit tied now but wanted to get this out)

There has been many changes in my little life the past year.

I had gone through a very difficult time coping/accepting the regular progression of this mad, naughtyeye eyecondition. 

After ten years of being diagnosed I felt I had been smacked in th facewih emotion.  I couldn’t eat with worry and lost stone…(I’m back acting cake again border Line fatty) haha.. 👍🏻

So I can see random shapes sticking out..Lyon can kind of see the missing central vision here as there’s not much going on In The middle

            
(Trying to express the shapes I see)

The final picture I have blocked out what I can’t see of the picture as I look at it.

…it’s like when I’m in the bath my feet disappear…I play a game n state at my feet and move my leg up until my toe pops out of the blind spot. Ha. Very strange girl iam…
Anyway….
Stresses particularly finding a “normal” job, endless scrolling through the net trying to find something suitablety  that I can do independently and make a success of the things I have going for me haha.  

Alongside thinking if his didn’t happen to me what would my life be like… What job would I have, what car would I have , how my whole life would be different… Seeing friends, people in the street age rather guessing like a jigsaw that it could be such a body because it’s a person moving, going into there house…. So strange when your vision has been fine before to work with eyes that are just odd.
I realised it was weird when walking my dog I Wouldn t. recognise the people …I would recognise their pet…like oh itsthe little white fluffy one. Ha..it’s awful thinking,

I felt like everything got I top of me no I just sobbed all the way home ..I couldn’t express my feelings to family or friends without feeling I was worrying them even more.

I was ready to pour my heart out….

It s time to take action….

I rang the Macular Society and when I first rang I couldn’t speak I was so upset..I thought I cant believe my life has come to this…but the lady on the other end was really loved and reassuring.

I hung up at first as I couldnt get my words out. Th lady was. Calming and I told her how I was upset and felt I needed to talk to someone I wasn’t close to.

I felt If I didn’t hav this eye. Problem I would be doing a job that was creative, independent and would have a happy forefilled life.

I couldn’t help but think “imagine”,,,,

I had also enrolled at college which was a big realisation that IT wasn’t just ‘a bit of an EU problem” I used to try and cover up….. 

After starting night school June 2013 I loved floristry so much I began a full time course September 2013.. This is where I saw a big change as I have sang for years and not really picks up a pen to write with I learned hat I now couldn’t read my own. writing, I had to take pictures of the black board and zoom which was very slow and boring… But despite this I completed my course just a few months ago and awaiting my results.

I still don’t know what some of the peopl on my class look like after nearly a year but never mind I smiled when I alms I to th room and looks around and continued but made some lovely mates that I sat next to etc..l that were so helpful if I struggled racing anything,,, theta hers also blew pegs up Ono massive fonts which was great too.

I just struggled initially accepting this is life now….

After ringing the Macular society I had about eight assigns with a councillor on the phone for an hour a week.

th councillor set me goals and asksed me to see the situation as if I had good vision and someone visually impaired came to work with me and if they needed help… What would I do…

I said no problem, course etc…

So she made me feel that people would understand.
We set goals and she gave me tasks to do and oI kept her updated with how I was getting on.

My New Years resolution was to work in a florist wishing the fist six month of the year.

I had written cvs with detail about Stargardts and some withoute, I approached numerous florists but no luck… I kept at it… My mum and dad always say ” if you throw enough sh!t at the all, eventually some will stick” basically keeps trying until. You get there…

I had tried everywhere even offering to work for free.

I nipped to town and as my taxi pulled up something to,d me to take my cv…  

As I go into ow there was a flower stall setting up,,, I actually thought I was seeing thing. I walked past and nipped to Topshop. I thought you don’t get if you don’t ask.

I had a trial the next weekend and got the job!

I was made up! I worked there a couple of days. A Week….there was only onpwrson on th still at a tim but it was a great. Experience!l

 I did this for nine months and through working at the stall I got to know a few people which led to an interviea clothing company which I also worked at for nearly a year…
I missed doing my Art mainly so didcided to and get a studio up and running, mixed with singing and promotion work.

 This is a cat I’m painting for a friend… I use my iPad to zoom every part.

It can be extremely difficult to get the scale of the image correct as I am zooming in and out and hen finding where I am up to on the page is a challenge in itself but I am often. Suprized. When I take a photo and see th result zooms in.

I find taking pictures of my work exciting as it always looks better Han what I see. Through my own eys””3  

I just wanted to get. Back I touch to say don’t feel alone there is help and think of the great vision we do have.
I have although in saying this experienced a big blue bright flash light in my eyes where all my vision God for a couple of seconds. It’s painful and scary…has anyone la experienced this?
I also went for a couple of appointments this year in London to have almost a bonocular lens implanted. But it as t suitable.
I’ll keep eatifng my veg and exercising….
Until next time❤

Here’s some of my art work I’ve Ben working on recently! :Dx 

Work in progress!

Thank you for #apple #zoom #accessability #freedom #chance #ipad
    
    
    
    
    
    
   

I love skiing!!!!

13 Nov

Skiing makes me feel free as a bird, in control of my speed and I can travel to wherever i want ( within reason!!)…

From being a kid my dad shared his passion with the rest of the Johnson’s and created a couple of speed demons on the slopes!!!

I started skiing when I was about 8 and we have been lucky enough as a family to travel “all over the shop” (Father quote) and spend loads of brill holidays together.. our little ‘Brian the Snail’ (Mum) comes too and tries her best, and deep down, she likes it😛 haha.

In the last couple of years my Dad became a qualified ski instructor and has traveled to Italy teaching British school kids!  A life time ambition complete! Nice one daddd Xxx

We’re going to Austria again soon! It’s Gaz’s 4th ski holiday n he’s really good too!

Excited!

Here’s a couple of videos of us skiing.  Hope you like..

(I am wearing lime green pants with a purple coat)

Here is a video of Gaz of his second time skiing.  He is wearing red trousers and a yellowy green coat.

I’m considering wearing bells on the slope this year  to make people move out-of-the-way!!  Like my own beeper on a car haha..

I always wait for a clear slope so no one will get hurt!! And follow or get directions off family members on which direction to head.  We usually ski the mountain in sections so it’s easy for my eyes!

I think because I could ski before Stargardts it’s made it easy as I literally just take the rough with the smooth on the slopes and seem to be able to absorb any bumps in the terrain..

Simple!
….always wear a helmet!!

It’s good to talk !

29 Oct

Hey there!
Sorry I’ve been distant recently!

(I had forgotten my password and couldn’t get into wordpress!)

I’ll write a blog updating you on what’s been going on in my little life… I am due to be a Mrs.. Me and my partner got engaged on August 4th!😀.
Exciting times-I better egg my apron on .haha…

But for now.

It is amazing who you can meet over the internet..

One of the reasons I made this blog was to hopefully have contact with people of a similair age to myself with a similair problem to share experiences and get inspiration from others in this situation.

And guess what…. I recieved an email off a girl named Becca!

Becca emailed me a few months ago.. and she has been a breathe of fresh air…
It has been a great comfort sharing experiences and as it turns out we have the opposite problem…
Where I have no centeral vision, Becca has no perifferal vision…
So together we would have perfect eyesight haha….

It turns out we started with visual problems at a similair age and have had similair experiences with vision loss and the way we are dealing with things are similair too…. Which is uncanny!
(Sorry for using the word similair a lot there!-couldn’t think of another word!)

It’s been great to meet Becca..someone who fully understands the problems we face day to day which to the morn may seem like nothing!

Beccas is 24 and studying her Masters degree in early childhood at Chester uni..Becca has a rare inherited condition Retinitus Pigmentosa…

read Beccas blog and share with others:
http://beccahailstones.wordpress.com/beccas-story/

We wNt to start a group for people our age as we can’t seem to find much out there’ll.
So if you’re in a similair situation email us we would love to chat!
This sounds like a dating advert or something but it’s been really helpful talking to one another so feel free.

Kay🙂

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