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...

Stephen's Story

I've mentioned previously that I love social media - it definitely has it's dark side but for me personally it's been a way of keeping in touch with family and friends world wide, I've made a whole host of new friends (some of whom are now my closest confidantes), I've been able to source large amounts of information regarding my disability and connect to people in similar situations, I've been a part of movements to raise huge amounts of awareness / money for charities at the click of a button and I can follow some 'celebrities' that I admire / like without leaving the sofa.

One of those celebrities is Jason Manford.  For those of you that don't know who he is, Jason is a British comedian and comes across as a generally nice bloke who adores his children. My husband and I went to see one of his shows last year and it was fantastic - like going out for a night with your friends, having a drink & chat with loads of laughs thrown in! I've admired him from afar for some time for the way that he uses his fame / celebrity status - he is constantly promoting charities, causes and sharing stories via his Facebook and Twitter pages to raise awareness and to get things in the public eye that might not otherwise be seen.  

Yesterday afternoon I logged into my Facebook account and was having a look through my newsfeed when I came across a post from Jason Manford talking about a young man he met a while ago, Stephen, who has terminal cancer. He's just 19 years old. Sadly, Stephen has taken a turn for the worse in the last few days and is unlikely to survive for very much longer but when he was first diagnosed three years ago he devised a 'bucket list' of things he'd like to do.  One of the items on his list was to raise money for the Teenage Cancer Trust.  His original target was £10,000 but when he smashed that, instead of crossing it off the list and going onto the next item, he decided to push himself further and see how far he could go with £1,000,000 being his ultimate goal. Yesterday afternoon, when Jason bought his cause to the attention of his followers, Stephen had raised approximately £560,000 with the help of his friends and family; an amazing achievement.  Jason was determined that he would help Stephen reach his target before he passed away and has spent the last 24 hours actively promoting / encouraging / supporting as many people as possible to donate or at least spread the word about Stephen and his cause. He donated £10,000 of his own money and has agreed to donate all of his profits from his comedy business for the next month.  

This afternoon, the £1,000,000 target was finally smashed and the donations continue to come in for an incredibly worthwhile charity.  Stephen has managed to hold on this long and is aware that he has done it.  What an accomplishment!!

From reading the posts on Stephens page (Facebook - Stephen's Story. Twitter - @_StephensStory) he seems like an incredibly brave, humble young man that has truly lived his life to the full and made the most of every single minute.  In a final update from him yesterday he wrote on his Facebook page 'I will continue fighting for as long as I can, and whatever happens next I want you all to know I am currently in a good place mentally and at ease with the situation' - my heart was fit to burst at such a show of strength from this young man who has been dealt such a harsh hand in life.  I'm so happy that he hit his target and can leave behind a wonderful legacy.  His family must be so unbelievably proud of him.

Social media can been a mean and horrible place but it can also be one of the most powerful tools available to all of us and it's free!  I wouldn't have known about Stephen and his cause without it and I will always be grateful that I was able to make a teeny tiny difference to someone's life because of it.  You can help make a difference too - text Stephen to 70500 to donate £5 or go to Stephens Just Giving page and donate as much or as little as you can there - https://www.justgiving.com/Stephen-Sutton-TCT

Huge respect young man and I hope with all my heart that you can rest in peace knowing that you've made such a big contribution to so many lives.  And to Jason Manford - you are an awesome human being, keep making a difference.

AFUK x

Retinitis Pigmentosa - update!

So as usual, I'm running behind with my updates - I'm not sure how I ever thought I'd be able to keep up with blogging but as I love social media and talking (a lot), even if it's just to my computer screen via my fingertips, I'll carry on regardless!!

You might recall that in January I'd been back to Moorfields Eye Hospital in London for more electrodiagnostic tests - I was diagnosed with Sector Retinitis Pigmentosa 13 years ago but after a recent referral back to the eye clinic, the suspicions were that I don't have the 'sector' part, just the bog standard disease so we were going back to basics with the tests.

So last month I had a follow up appointment with my new consultant at our local hospital to get the test results. I really liked her and she was very good at putting me at ease - I'm used to hospital appointments and tests so they don't really bother me any more but I imagine a lot of people would find them very intimidating and quite nerve-wracking. Bizarrely, in a weird quirk of fate we discovered that she had actually been working with my original consultant at Moorfields when I was diagnosed all those years ago - small world! Anyway, the tests confirmed their suspicions and I do have the 'regular' form of the disease and not the 'sector' variation that was first thought.

Moorfields still have my original electrodiagostic test results from 2001 so were able to compare them and conclude that I've had quite a significant deterioration in my peripheral vision - I didn't have a clue! My central vision is perfect (thank goodness!!) and as the peripheral loss is so gradual I haven't noticed any decline at all. I still don't have any real typical symptoms (I can see in the dark / see the stars etc) but I can trip over thin air so I guess I should have been paying more attention to that! She confirmed that my degrees of vision are still way above the legal limit for driving so she is happy for me to carry on for now although ultimately that is down to the DVLA - my licence is due for renewal next month so we will see what they say. I still feel ok to drive but obviously everybody's safety is my top priority so if there's even a hint of being borderline I will stop, I'll hate it but imagine how much more I'd hate myself if I caused an accident!

My consultant also agreed to refer me for genetic counselling and genetic testing to see if we're able to narrow down my faulty genes - that way we can test little man and my nephews to see if it's likely to be passed onto them. As there are over 100 known genes that can cause RP (and many more that are unknown) it's a bit like finding a needle in a haystack but it'll help long term research too so I'm all for it.  I received my referral letter to Professor Webster at Moorfields this week so now I just have to wait for an appointment - fingers crossed it won't take too long! 

In the meantime, I'm going to carry on trying to make the most out of every day and using the vision I have now to create long term memories.  I read a lovely article this week (you can read it HERE) about a little girl who has RP making a type of 'bucket list' for her and her family to do before she loses her sight - think I might do the same :)

Hope you all have a lovely day!

AFUK x

Disneyland Paris Trip report - last day!

Friday 14th February - last day :(

We all got up showered, dressed etc and struggled out of our room with all of our cases at about 9.30ish - there was no EMH so there was no rush and we wanted to do the Studios this morning anyway. We left all of the luggage at the hotel storage room ready to be transported to the train station later and then started our wander towards the village, waving goodbye to the Hotels Santa Fe and Cheyenne as we went (literally - I'm sure other people must have thought we were loons waving and shouting goodbye to everything on the way!!).

The main aim of being in the studios this morning was to meet Mushu - E had not stopped talking about him since we missed him earlier in the week so it was today's 'must do' item and I was busily crossing everything I could that he would actually appear!! We were a bit early for the characters in Production Courtyard so we went over to one of the shows, Animagique, to see if we could watch that instead; sadly it had just started so we couldn't go in and the next show wasn't for another 45 minutes so we left that and headed past Crush's Coaster (only a 30 min queue - I need a trip on my own to do the rides!!) and went to see which characters were are out for Meet & Greets. It was Mickey Mouse on his own so E waited 5 minutes to see him again and we took a few snaps. Buzz wasn't out yet so we decided to wait as there was no queue at the time - there was just one English family in front of us on their first ever trip so we spent the next 20 minutes chatting to them about our trips and what they had done, whilst their son and mine compared autographs. I love how you can just chat to complete strangers as if you've known them all your life and it not be weird at Disney!!

Buzz came out to great fanfare and high five'd our boys on his way past as they were at the front of the queue and the Cast Member kindly stamped their autograph books because Buzz can't sign personally (big hands!!). E had a great time meeting Buzz again, he really loved the interaction and trying to copy his poses!

That done we wandered back to Production Courtyard to wait for the characters to come out. It was really damp, windy and overcast today & that horrible cold that seems to sink right down into your bones. We waited for five minutes and there was no sign of any characters yet so E got in the buggy and I wrapped him up in the little blanket I keep in it and I headed over to the little snack stop next to the Tower of Terror ride to buy hot chocolate & coffee for L and I. We spent some time looking at all the giant posters and E was talking a lot about Maleficent, pointing out all her pictures everywhere - as I mentioned he's scared of lots of things but for some reason he's really taken with her, even though we've never seen the film and to me, she looks quite terrifying!

After about another 10 minutes we saw some movement behind the gates and out came Ariel - our first princess :) E was happy because we met her when we queued at the Princess Pavillion last year (he refused to do it again this trip - 'it hurts my feet waiting that long for a princess Mummy') so he thought that she must remember him! She was lovely and really spent time chatting to him whilst she drew bubbles in his autograph book. Just as we were leaving Ariel, Mushu arrived - thank goodness for that!!! We rushed over and were right near the front of his queue line - E was over the moon and couldn't stop grinning. He kep telling L that Mushu isn't much bigger than him so he must be four too haha. Mulan was there too but E said he didn't want to meet her but L really wanted to see Mary Poppins and Bert so we queued for them and they were really talkative with E, spending quite a bit of time with him and asked if he lives near London as that's where they're from etc (good job he doesn't understand accents yet, they were decidedly un-English lol).

We spotted Aladdin and Jasmine over near Tower of Terror so we rushed over but the Cast Member said that he had closed their queue line but that they'd be back in 20 minutes time. By now E was absolutely freezing - whilst waiting for Buzz earlier on he had been running his hands up and down the railings in the rain water so his woollen gloves were soaked and by now his hands were blotchy and red they were so cold. A couple of days previously he'd spotted some giant Mickey hands for sale inone of the shops but I'd said he couldn't have them (meany Mummy strikes again), so L said that as he was so cold we'd go to the shop and she'd buy him some to warm him up so we headed into Studio 1 for some retail therapy. Two pairs of fleece gloves (one for E and one for L who realised she'd packed her gloves in her case), one pair of giant Mickey hands, a huge fleece blanket, a Peter Pan toy set, a long life Mickey bag and some sweets later we finally left the shop laden down with bags!! Sadly cuddly Sven and Kristoff were not to be on this trip, much to our disappointment but it did mean that we could buy some other stuff instead so there's always a silver lining.

We headed back outside and E was showing off his giant hands to anybody that happened to walk past, much to their amusement! The characters were all having a break for now so we went to test out the scream machines at the Monsters Inc set and E gave Mike his traditional cuddle plus an extra one for a friends little boy back home . We wandered down to show E the Moteurs, Action, Stunt show area to see if he would give it a try later on (well, you never know!!) but of course it was a no! I was excited to finally find the raining umbrella though (a prop outside one of the shops that actually rains!) but it's not raining, presumably because it's winter and there was enough of it falling out of the sky already! Back we went to see which characters were out and as we walked back we saw Gaston from Beauty and the Beast striding across the courtyard to Aladdin and Jasmine's spot, right by us. We've never seen him before so we waited and were second in the queue; E was a little bit nervous - Gaston was huge and of course talks in this big, booming voice. When It was our turn, Gaston shouted to E 'come here boy, what are those ludicrous hands - are you a mutant?!' at him, E and I were in fits of giggles (not sure what L thought at this point haha) as he ran over and got his book signed. Gaston was AMAZING!! He is my favourite face character by far now, he was so so in character and the cast member playing him obviously loves his job. He got E to pose with his giant hands in the air to show everyone and then as we were getting ready to leave he said to E 'who is that ridiculous woman with you, shoo, go on, take her away' - I haven't seen E laugh like that in ages and I had a huge lump in my throat, close to tears it was so so special. Since we got back he keeps telling all of his friends about Gaston telling mummy she was ridiculous and needed to shoo lol.

As we were putting the autograph book away Aladdin and Jasmine wandered over with their Cast Member who had a little tiff with the cast member with Gaston as he'd 'stolen' their space - Aladdin and Jasmine didn't seem to care and wandered off underneath the portico (the bit with the chairs and tables) to find their own space and their cast member ended up chasing after them! They found a great spot in front of the arches, looking back into the courtyard - I think they should just leave it to them to find a suitable spot next time haha. When it was our turn Aladdin chatted to E whilst Jasmine signed his book and then they swapped - but disaster, the pen runs out! Argh, clearly had too much use this week lol. Aladdin asked the cast member if he could have another pen and he wouldn't let E leave until it was signed, which I really appreciated. They then showed him how princes and princesses pose in Agrabah so he could copy them.

We'd had an amazing morning in the studios but we took E's pen running out as a sign to leave and headed back to the main park to find somewhere warm for lunch. Lots of goodbye waves to everything again as we leave!

It was about 1pm by this point and we were all a bit cold and damp so we decided we needed somewhere nice to sit and enjoy lunch. We settled on Plaza Gardens, which is a buffet restaurant at the end of Main Street - for some reason it's never really appealed to me before but I am so glad we tried it, it was lovely! We queued for about ten minutes and then paid the cashier, before being shown to a table by the waiter who took our drinks order to get. We had a fabulous lunch at the buffet, there was so much to choose from and E loved watching a man carving pictures into watermelons in the central section. I wasn't sure if refillable drinks were included in the price but L and I both asked for another drink expecting to pay for it but we weren't charged for them so presumably they were.

We spent just over an hour in there and would definitely go back again, shame we didn't try it before really! We then had a final wander round the lands (to wave goodbye obviously!!) and did some last minute shopping in Main Street before saying a sad farewell to the park. We went to the village to grab some drinks and snacks (brownies) for the train ride home from Earl of Sandwich and had a last look round the shops, trying on fabulous ears / hats in the Disney Fashion store and then that was it, time to head to the train station to collect luggage and board the train home :(

So, it had it's ups and downs but despite the illnesses we still had a fabulous week - it didn't stop us too much and looking back, it was nice to come home a little rested instead of completely exhausted for a change!! There were lots of things that I wanted to do that we didn't manage (Dreams & Stars and Cars to name just two - trying not to be too gutted about that!!) but, we have never ever seen so many characters out and about and had such fantastic interaction with them all so really, really can't complain.

Now to plan the next trip ;)

AFUK x