A visit to Moorfields

I've written quite a lot about mental health on my blog - and in fact I may write some more soon as I have my first CBT appointment tomorrow morning, but I've not written a lot about being partially sighted. I guess this is because I've always been partially sighted so it's not really something I think about that often.

This week however I was faced with an issue I never thought I'd have to face - that my vision is getting worse. I always assumed that unless I developed something like glaucoma which I am monitored for annually, my sight would stay pretty stable. I thought this because as a baby I had both my lenses removed because I had cataracts. Back then they didn't have the technology to implant new lenses so I've always just used glasses and later contact lenses to help me see. Even with glasses or lenses my eye sight is pretty rubbish and I am registered as partially sighted.

I don't see well enough to drive and it is hard for me to explain to others how I see as I don't know what to compare it with, as this is all I've ever known. The easiest way to explain how I see the world is that it is like an impressionist painting (colourful, blurry, and quite beautiful) but as I don't have a lens I can't focus and so my sense of perspective or understanding of moving objects is totally impaired. With my contact lenses in I can read the top 2 lines of the eye test chart and that's it. Well that's what I could read.

Over the last 5 or 6 years I've been complaining to my consultant at Moorfield's that my night vision was getting worse. They thought it was due to the fact that my pupils don't dilate very much, so light doesn't get in to the back of my eye. I also felt that I wasn't able to read small print as easily as I used to, I get tired a lot more easily and get headaches from reading which I never used to.

This summer I complained that I was seeing strange brown or black shapes out of the corner of my eye - not like the normal floaters I've had all my life though they are getting worse too. So I was booked in for an ultrasound on my right eye.

On Wednesday I went for the ultrasound and then saw my consultant. Before I saw my consultant I saw a junior Dr who after getting me to read the eye chart looked worried. I wasn't reading as much as I used to and this was a trend. He looked back at the results for the last few years and it showed that steadily I was reading the letters less and less accurately and this time I couldn't make out the letters on the 2nd row at all. He looked worried.

My consultant explained that I had a lot of scar tissue in my eye from the operations as a baby and also "opacities" caused by the scar tissue on the back of the remains of the capsule in my eye which used to hold my lens. The symptoms I am experiencing are because the scar tissue does not allow enough light into my eye and also scatters the light in a strange way which is why I am getting so much glare from lights particularly at night. The less light that reaches the retina the less I can see.

I basically have the symptoms of a cataract! The one thing I thought I could never get. No lens then no cataracts again.

My consultant had his serious face on and asked if I'd like to see the low vision aid clinic. That made me realise that this was something serious. He also said that he could potentially do an op to help get more light into my eye but he'd rather monitor what happened for a bit. I've had this discussion before about the op to remove scar tissue - before it was causing me any problems. Its not as straight forward as usual laser op which takes 15 minutes. I have nystagmus which means my eyes wander about, using a laser on a moving target isn't my idea of fun! My consultant knows that I'm not keen on having other operations if I don't have to. There are of course risks with any op, and this one could end up making my sight worse rather than restoring it to what it was. What it was, wasn't much cop in the first place so is it worth the risk?

It turns out that my other eye also has this scar tissue and is also developing the same problem.

It's an interesting dilemma for me to face - I never thought that my sight could get worse so I never thought about what I'd do if it did. My consultant asked if I'd like to be referred to the low vision aid clinic. I explained to him my job and how I'd worked for the RNIB in the past and used lots of technology to help me. I'd helped others use low vision aids to help them remain in work.

The things that have struck me most after learning about all of this is the fact that I didn't make more of a fuss about the fact that I felt that my vision was getting worse. I'd mention it at the hospital each year but wouldn't push the matter. Sometimes I'd tell myself that it was all in my head and that my vision was the same as before but I just wasn't coping as well. I really convinced myself of this. I was hard on myself saying that I just needed to be braver about walking about in the dark etc.

Now I know that it wasn't in my head I actually feel relieved and I'm prepared to make changes now so that it's easier for me to get about. I've bought a small maglite torch to carry in my handbag and use at night. I'm more prepared to use taxi's and take things more slowly when walking about unfamiliar places.

I am just going to have to wait and see what happens with all of this.

Hallowe'en

It's Hallowe'en tonight and it seems this year the country has gone Hallowe'en happy! Saying that, nothing could compare to how the Japanese celebrate Hallowe'en. The pictures on my blog today are from a year ago in Canal City shopping centre, Hakata. The quality isn't great because it was quite dark but I think it gives you an idea of how the Japanese shopping centre was decorated!

I've been too busy to blog again. I know it's a rubbish excuse but I really have been rushed off my feet for the last couple of weeks.I have been up to the following:

• Being a good host - Jason's parents visited last weekend and took them to Cambridge last Saturday. It was a lovely sunny day and Cambridge looked lovely.
• Being a good auntie number 1 - Jason's brother and nieces and nephew visited last Sunday which was lots of fun but kept me busy cooking, taking the kids to the park and trying to be a good auntie!
• Star gazing - we had a couple of lovely cloudless cold nights last week and I spent some time looking at the stars particularly vega and the other bright stars of the "summer triangle" as well as marvelling at Jupiter's brightness.
• Event organising - on Thursday it was RADAR's Future of Disability Equality round table discussion, hosted by Holiday Inn and chaired by Baroness Jane Campbell. I helped organise the event for RADAR which sparked some really interesting discussion and actions to take forward. I'll write more when the report is complete and link to it. The event was attended by former Ministers, business leaders and disability activists.
• Being a good auntie part 2 - I visited my brother and his 4 children on Friday afternoon. I had great fun going to the park with them and Nanook the husky as well as being read to by my niece Lucia who is 6.
• Reading - I've still not finished Inspector Imanishi Investigates on my Kindle and yet I've also started reading a book on psychology as well!

There has been lots more besides but I shan't bore you with it. Tonight Jase and I are cooking a roast dinner of roast chicken, roast veg, mashed turnip and sweet corn mmmmmmm. So I better go and par boil the tatties.

Work, work and Buddhist statues

Yet another apology from me for not blogging often enough. I have just been so busy over the last few weeks with my work for RADAR organising their AGM and debate last week - which was a great success. I'll post when there is more information on it, there will be a blog entry and a report.

At RADAR I'm also helping them organise a very exciting round table event next week looking at the future of disability equality for the next 15 years. Should raise lots of debate so watch this space too for more information.

I'm also working for the Met Police at the moment another important piece of work around involvement of disabled people in the strategic work of the police in London. I will definitely blogging more about this and linking to their website once it all goes live.

On Saturday I was delivering training at the V&A museum for Action for Children, delivering diversity and disability training for their volunteers. It's always really good fun doing this training, the volunteers are always really enthusiastic and engaged. Holding the training at the V&A was a stroke of genius too. To get to the training room I had to walk through the gallery of Buddhist sculpture including the gold statue of Tara above. If you click on Tara it will take you to the V&As website with all the information you need to know about the statue and the photograph. I linked to this on facebook and a couple of my friends really enjoyed looking at the website. It certainly gave me a feeling of peace and serenity before the training. I went back afterwards and spent some time amongst the sculptures which was wonderful.

When I've not been working or looking at Buddhist sculpture I've been doing lots of admin for my business. I had my first meeting with my accountant and he really helped me. I have been doing a lot form filling, registering with tax authorities and filling out spreadsheets but it will all be worth it in the long run!

Hamlet

I'm going to have to write a few catch up entries because I've been a bit slack blogging lately. I'll explain why shortly.

Hamlet

I'll start with Hamlet. A week ago I went with my Mum to see Hamlet at Sheffield Crucible Theatre.

I love the Crucible, it's a small, cosy theatre almost in the round. It is in fact shaped like a crucible and the alchemy on stage there always seems to entertain whether its Shakespeare or snooker.

The cast of this production is impressive:

Hamlet: John Simm

Claudius: John Nettles

Gertrude: Barbara Flynn

Just to name a few of the cast.

Hamlet is not one of my favourite Shakespeare plays. My favourite is King Lear I think it has everything you could ever want from a play. In fact I think I prefer MacBeth to Hamlet. Saying that Hamlet was the second Shakespeare play I ever saw and it was the Mark Rylance Hamlet of 1989 It affected me so much as a 15 year old that I thought no Hamlet would ever live up to it. I was probably right but, older and wiser I realise that there is room for a different interpretation of Hamlet.

With John Simm playing Hamlet it was inevitable that the critics would compare it to David Tenant's Hamlet. (David Tenant's Dr to John Simm's Master in Dr Who.) I wasn't able to get tickets to see David Tenant as Hamlet (though I tried and my phone bill was testament to this!)

I did see the televised version though at Christmas and within 10 minutes I wanted to slap Tenant's Hamlet and tell him to just grow up! This is my usual response to any Hamlet who isn't Mark Rylance.

But This current production of Hamlet made me think differently about the play and the character. It was an incredibly accessible version of Hamlet and Shakespeare. Some purists don't like that sort of thing but Shakespeare if performed right is incredibly accessible. I actually understood some aspects of Hamlet as a play and character I haven't before. The fact that Hamlet does doubt the ghost, and so his mind. Not in some grand way but in a very ordinary way.

John Simm's Hamlet was a bit blokey, and matey. He didn't swagger but unlike some Hamlet's he didn't slouch and sulk either. He was just a bloke. Yes a mixed up, grieving, stupid bloke but he was just a man. I liked that a lot.

The rest of the cast were all excellent particularly Polonyous, his fate was genuinely shocking and a bit sad even though he was a busy old fool. John Nettles was good too, and I did soon forget that I was watching the bloke from Bergerac!

So if you can get to see it in Sheffield I recommend you do!