Life in general...

So. Life.

It has a funny way of moving on before you even realise it doesn't it?!

The good news, in brief, since my last post - I got my driving licence back for another year - wahoo. I also saw Prof Webster at Moorfields in August and he's happy that the RP isn't progressing much at all at the moment, which is a massive relief. There's no results from the Genomes Project yet but that's the same for everybody so he wasn't concerned. Hopefully we'll hear more about that by the time I go and see him again in 18 months time.

The bad news.

There seems to be so much of it around at the moment doesn't there? I'm struggling to comprehend the world a little bit at the moment - there seems to be so many atrocities and far too many innocent lives being lost just now. 

I was so, so sad to hear about the Paris attacks - don't get me wrong, the similar attacks in Beirut, Raqqa and Mali are equally as tragic but I, perhaps like many others, can relate so easily to the Paris attacks that it feels a bit more real somehow. I've been there several times, I recognise the streets and monuments, I feel at home there and speak a little of the language.

In all honesty, I don't really understand any of it. Oh, I know about the power, the 'religion', the revenge etc etc 

But how can we do this to each other? How can we willingly cause so much pain and destruction? 

Essentially, it's all down to greed. We want what someone else has or just something 'more'. 

If we were all kinder to each other and shared some of the wealth around, none of this would happen. Too simplified? Obviously. But true perhaps.

As an ex colleague pointed out this week, none of this has anything to do with race. In reality there isn't really such a thing as multiple races. Ethnic origin, yes. But does it matter whether you are black, white, brown, yellow, blue? No. Colour is irrelevant. Religion is irrelevant. 

We are all one race. Human. 

If only we remembered that sometimes.

Anyway, enough pondering. I'm going to go hug my child, tell my family I love them more often and be kinder to the people I meet in every day life. 

Just because I can. And I should.

AFUK x

Driving licence renewal...Update!

Well, actually there's nothing much to update ha!

I had the test at Specsavers as planned. It's my first time having it done there and whilst the staff were brilliant and I couldn't fault them at all, they're really not set up very well for this at all. The machines are basically in the waiting room - there's a low (maybe 3 foot) wall between the machines and other patients but you can here everything going on so its a bit distracting. There's also other machines in the same area so people were coming and going having other tests too. 

As I said though, the staff were excellent and went out of their way to do as much as they could for me. I really struggled with the test this time. I don't know if it was just because I couldn't concentrate with everything else going on around me or the headache I had (later that day it turned into a full blown head cold so could have been that) but it's the most stressful test I've done so far. 

The lady doing the tests showed me the printouts afterwards and interestingly I'd missed hardly any lights and the ones I did weren't in the peripheral of my vision but I had clicked a couple of times when there weren't any lights, which can also be a reason for failure I think. As I say, I'm not sure what was going on that day but I really didn't find it easy at all but good to know that generally my actual vision is still doing ok. 

I got a letter from the DVLA later that week to say that there's a nine week delay on medical inquiries so I've still not heard anything yet but what will be, will be. 

Next week I'm back off to London to see Professor  Webster and I'm hoping they may have some results from my genetic testing, watch this space!! 

Update! DVLA eye test ...

So I really should try and get back on track with this! 

Not sure where I got to as it's been so long since I posted but I'll try to update you on the latest goings on with my RP. Basically, last summer I saw Professor Webster at Moorfields to review my case - he's one of the leading retina consultants in the country so I knew I was in good hands. I spent four hours there having more drops, photos, examinations etc and discussing possible variations of the disease with him and his team. Their knowledge is incredible and the research ongoing is really positive.

As I had my mum and my sister with me (neither has the disease) they asked if we would consider being entered into the new '100,000 Genomes Project' (see HERE for more info), which has been set up by the Department of Health in the UK focusing on rare disease, cancer and infectious disease. We all agreed and had blood work taken for research purposes.

Our saw my local consultant early this year for an update and she's happy for me to continue seeing both her and Prof Webster every six months to monitor how I'm progressing.

It's now that time of year again for my driving licence renewal.  It's always a nervy and worrying time for me but it's best to make sure that I'm still safe to be behind the wheel of a car so it's reassuring too. I'm off for my visual field tests next week so I'll try to remember to update to let you know how things have gone! It can take a few weeks to get the results but fingers crossed I'm still ok to carry on - if not, I'll adapt; I don't have much choice!! 

So, first update in over a year and it's fairly brief but I'll do my best to update a bit more often from now on! 

AFUK x

A year?!!

I am officially rubbish. A whole year since I posted?!!

Wow.

I will get better. Maybe...