Finally have the courage to tell

Hi guys,

I finally feel like I can share the good news… I didn’t before because I was still so scared and felt like maybe I couldn’t do it.

I passed my driving test!!

I passed in February by learning to calm myself down to be able to do the number plate vision test. I still couldn’t do it when they first asked and they still had to measure out the correct distance with a tape measure but then I did it easily. And then I passed the test, first time too! 

The last few months has been draining on my emotions and I recognise what I can and can’t do on the roads. I think it will be a very long time before I hit the motorway, and I get stressed in busy traffic, but my best advice is to try and stay calm. Even if there is someone driving up your ass, trying to make you go faster,  if you dont feel like you can, then dont! 

I drove to somewhere I’d never been on my own for the first time last weekend and although it was only on the outskirts of town, I really felt like I achieved something. 

Finally, a big thanks to all my friends and family that encouraged me to keep going even when I was crying because I’d had a bad lesson or even after I’d passed. I really appreciate it even though I might not say it out loud. 

Here, have an embarrassing chuffed photograph of me.

Leah xx

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Anyone else?

Haven’t posted on my blog for a while due to working and not actually having anything to post about. HOWEVER, I went on holiday a few weeks ago and whilst we spent the week in the idyllic French countryside we had the chance to see the stars properly (a lot differently to my normal city view).

Whilst it was beautiful and lovely to see, finding constellations proved difficult for my wobbly eyes and I just wanted to tell you a bit about it to see if anyone else has had the same experiences…

Whilst I could see that all the stars were very bright and white in the sky (unlike the smudgy red-ish sky of a city), when it came to pointing out specific groups of stars they all blurred together. They looked to me like stars with white lines in between – how I imagine a shooting star would look. I think this is because of the movement of my eyes so they appear in my sight to be moving, but so fast that they leave a little white trail.

I often get this with small lights such as the standby light on the TV (in the dark) and Christmas lights on the tree. It happens a lot more in the dark than the light – maybe because it’s harder to focus, or because the lights are brighter – I don’t know?

Anyone else know what I mean by this – very bad – description? I know it’s probably difficult for people without Nystagmus to imagine, but for me it’s an every day occurrence. It particularly impacted on the stars so I thought I’d share.


In other news I have my driving theory test next week and am particularly scared about the hazard perception test (UK theory test) because I find it hard to focus on the whole screen whilst lots of things are moving about. Can anyone share their experiences with this in the past? Did you have the same worries and how did it go?

Thanks for reading,

Leah xx

 

‘Don’t give up’ easy to say – not so easy to do

Just a quick update on the driving front:
I have had 2 driving lessons now and it’s going really well. I’m more confident that I thought I’d be and am so glad I persevered.

My driving instuctor is so lovely and I totally feel calm with her. She is so relaxed and explains everything so well. I already can’t wait to get on the road by myself and achieve what I never thought I would.

I’m only on my 2nd lesson so I’m sure I’ll have a few struggles along the way… I suspect nightime driving may be difficult and I haven’t had an issue with bright light yet but I’m sure the day will come. But I’m not giving up this time. Even having two lessons is a big achievement for me so anything more will be fantastic!!!

To all of you out there, those with Nystagmus, or those that know someone that has it, don’t give up hope. When I was diagnosed at 4 years old they told my parents I’d never have a normal life, and DEFINITELY no driving, ever. Well I proved them wrong.. and I’m proud to have succeeded at something I once got so upset about.

Thank you to my family, friends, work colleagues and my wonderful boyfriend for being so supportive – He even let me drive his car! 🙊

Onwards and upwards to the future. Keep hoping and trying and dont leave it 2 years full of disappointment like I did! Please comment your driving thoughts. I’d love to share stories or worries. 👀

Leah xx

Good News

So, last Tuesday (1st) I had the best day!

Months ago, I contact Jay Self, a Nystagmus researcher at Southampton General Hospital, and we arranged for me to take part in a study and get further tests done on my eyes.

So, last week we took the drive down south and visited the lovely Mr Self who made my year! After all the tests he said to me that I have great vision for someone with Nystagmus and there is no reason why I shouldn’t be able to drive.

I explained that I had previously been told this but am unable to read the number plate from the required distance due to being stressed (and maybe due to the font). For the first time in my life someone reassured me that we’d get me driving, and that there are other things they can do to help me!

Apart from that brilliant news, I also took part in the genetic study he is conducting and am glad to be a part of the research.

I have booked my first driving lesson for the 22nd March and will update you on how it goes – if it does that is. Hopefully I can manage to read the number plate… and hopefully it doesn’t take the whole hour!

Leah xx

Closest thing I get to driving

So, in September, last year, I decided to take up horse riding, again. I used to ride when I was about 8 but then I got ‘too cool’ for it. Now, it’s something I look forward to every week, and it’s the perfect hobby.

My riding teacher is always asking me if I drive and referring to riding being similar to driving. I always forget to look in the direction I am going to go – because I’ve never had to experience anything like this! When I’m walking I just look straight in front of me… you dont have to look around the corner before you turn it! It’s a totally new concept for me and I’m beginning to get to grips with it.

I’ve already progressed so much since starting in September and feel like I really do have a hobby I love and will carry on with. I’ve always loved animals and anything to do with them. Unfortunately, I chose not to pursue this interest as a career when I was at school due to a lot of animal based jobs being at remote locations where I, as a non-driver, would struggle to get to. But I won’t let that stop me from having a good time every weekend.

This week I’m mixing my riding hobby with my photography hobby and taking some pictures at the riding schools event. I’ve been looking forward to it all week – can’t wait!

I guess all I’m trying to say is that you should definitely try and pursue anything you want to do. Even if you can’t do it professionally because of Nystagmus (or any condition), you should do what you love, even if it’s less than you’d like!

Luckily, I have a brilliant boyfriend who understands and takes me to lessons at the weekend. Thank you Cam! 💑
Also big thanks to Harry, the horsey, for putting up with me learning, and being such a good boy. He’s my favourite at the stables. 🙊

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Leah xx

Nystagmus and Driving

Exactly how I feel 🚗

The Shifty Eyes Blog

This may be one of the most sensitive topics for people with nystagmus. As you can imagine, anything that affects your vision may affect your ability to operate a vehicle. Let’s talk about driving and nystagmus in general, and then I’ll tell you a little more about my experiences.

Can people with Nystagmus drive?

It depends on three things:

  1. How extreme the nystagmus is. It may be that a shifty eyed person needs to get a note from their optometrist/ophthalmologist saying that it is safe for them to drive.
  2. General vision. Many times nystagmus is accompanied by low vision. A person with nystagmus will need to take the same eye exam at the DMV as any other person would do. This test can be taken with glasses on, but that will mean that the driver would need to wear the glasses at all times while driving.
  3. Where the person lives…

View original post 499 more words

The Wire

We finally did it! After two cancellations, 23rd Jan was the day we did our sponsored Zipwire. It was absolutely perfect weather for it – not cold or windy, but not too hot either.

In fact we enjoyed it so much that we’re going to do it again! Not sponsored this time – just for fun.

Unfortunately my camera struggled to focus at the start of my video so you can only see us up close about half way down. Next time we’re going to get the gear and video it on the way down!

You can find the current video here.

Leah xx

Relating to others, you’re not alone

Today, a colleague told me she noticed Richard Osman, from Pointless, had Nystagmus when watching him on TV. The only reason she knew about Nystagmus was because of my sponsored Zipwire – which we completed yesterday – blog post to come. It’s a good feeling, to know someone was aware of the condition was because of me.

Anyway, I immediately searched on the internet to see if it was true and found this article. I was the most relatable thing I’ve ever read. Every word is so true to how Nystagmus feels. He talks about his mother letting him sit close to the TV to see detail that he, otherwise, would’ve missed. It brought back memories of me having my own chair to sit close to the TV in the lounge when I was younger. I don’t sit closer to watch films anymore, but still find I have to if I want to play video games – mainly so I can read the text on screen, but also so I can concentrate on all the details.

The most important part of the article for me – the bit that stood out the most – was when he talks about being worried about ‘blanking’ people. I constantly feel like that… I can’t make out faces from across the street and often don’t realise who people are until I’m about 2/3 metres away. I’ve been in town for the day and then got home to a message saying ‘Hey, I saw you today, I waved but you were oblivious’. I wasn’t oblivious, I just couldn’t see you! Because of that, I find myself scanning the crowd for people when I’m out, taking extra care to take in details. It’s tiring and annoying – but it’s the norm for me now.

The article also states ‘When he tells people he has nystagmus, they rarely understand why stronger glasses won’t help.’ This is such a classic question when I tell people I can’t drive because I have Nystagmus. ‘Can’t you just get stronger glasses?’ – It doesn’t work like that because short sightedness is just a secondary factor that comes with Nystagmus. The Nystagmus itself cannot be overcome. I wish people were more aware of it. This was always a problem for me at school when I had to explain to the teachers, so I could sit at the front – or have my own text book. They didn’t know what it was and often forgot, it was embarrassing to make a scene in front of the whole class so I often just sat back quietly and ‘learnt to listen’ – like Richard states. But the fact that out of maybe 30 teachers I had throughout all my education, only 1 was aware of Nystagmus, that’s shocking, now I think about it.

Hopefully with all the hard work from the researchers and eye specialist doctors out there, school won’t be so embarrassing and overwhelming for future generations. It’s always going to be a worry that my future children will have Nystagmus – I shouldn’t use the word worry, as it’s so negative, but it is a worry that they might have to tackle the struggles I did throughout my childhood. I’m only 19 so I guess I probably have many more to come – but on the bright side they are learning curves too. I probably wouldn’t take in so much detail of the world around me if it wasn’t for my Nystagmus, being observational is always a plus.

Enough rambling for now. Will update with a post about the sponsored Zipwire soon.

Leah xx

 

Richard Osman’s Article – Read more: http://www.dailymail.co.uk/health/article-2484711/Richard-Osman-reveals-nystagmus-helped-make-star.html#ixzz3yLcmb3aT

 

 

My Eyes and Nature

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On holiday in France over the New Year… and its the perfect opportunity for me to take some photos.

The little rural home and surroundings make amazing shots, and apart from that, I love exploring.

Having my camera lets me get my creative side into action… just because my eyes are wobbly doesnt mean I can’t take a good photo! My DSLR is my baby – Will upload more when I get home and have a laptop.

I love taking photos of the wildlife out here as I dont get much chance for that at home. I do find it harder to spot the little birds because of my eyesight – and I can’t focus as quickly as I’d like, but I still get some amazing photos with my zoom lens.

Today I experimented and took some sunset shots, and direct sunlight shots. I did struggle a bit with my light sensitive eyes – it just takes slightly longer for me to regain my sight after looking at the sun. Glad I persevered as I’m pleased with the shots and even found a horse to photograph on my adventure!

All I can tell any of you guys with Nystagmus is don’t give up. No matter what it is, just keep trying – yeah, it takes me longer to achieve the photos I want, but I love it and have found a great hobby out of photography.

Leah xx