The effect of it all

What's been the effect of all this new eye stuff on my vision, my life and the way I live?

Bloody hell I was clumsy before but now seriously I am worse than ever,  everywhere I go it seems I cause a trail of destruction!

Any co-ordination I once had has now gone completely, and lets face it hand eye co-ordination has NEVER been my strong point.

Balance to has got worse I wobble a lot more than ever before, I'm falling a lot more than I have in a long time to and I'm rather tired with it all.

Possibly the worst bit is the eye strain, persistent headaches and being tired and grumpy all the time.

So in short I spill everything, walk into stuff, break things and am generally a walking disaster!

Oh well at least its amusing for you all to watch all my mishaps!

The consultant calls...

On Tuesday evening I got a call from a consultant at the eye unit, very nice consultant Mr T phoned and apologised for all the mix ups and revealed that they are still unable to find 10 years worth of my notes, the early ones about eye sugary I had at 11 weeks old onwards.

He said he wanted me to go in today (Wednesday) for some tests and to see a different consultant that specialises in the back of the eye Mr S.

So today I dropped everything and headed off to the eye unit/day centre for 1 o'clock.

The bus I normally take is called the U6H and is part of the Uni Link service, this goes round half of the world and then goes to the eye unit taking at least an hour. I took a different route to the bus stop than I normally would to try and save time, on the way I realised I was going to pass the First Buses office so popped in there to ask if there was a quicker bus. Less than 5 Minutes later I was on the number 4 heading to the hospital even better it took less than 20 minutes!

(Oh dear! I have just realised what a sad anorak I sound like sitting here blogging about bus timetables!)

So anyway arrived a bit early and was told to basically go away by the receptionist and come back at my appointment time,  so I went for a walk.

Then I did my distance vision test, and only managed finger counting with my right eye. This is where the nurse or whoever stands about a meter away from you and holds up fingers to see if you can count them. 

That's a deterioration because I can normally see the top letter of the eye chart from about 2-3 feet away, so great I have probably lost a bit tiny bit of vision, or quite possibly I am just having a bad day and if I where to do the test again tomorrow would do better who knows!

Then I got sent through to a new waiting room with comfy chairs and a water cooler absolute luxury compared to the other waiting room! I then got a call from a nurse who was tasked with explaining everything to me.

My pupils don't really get bigger or smaller with changes in lighting condition's so the nurse was unsure whether there was any point putting drops in my eyes to dilate my pupils so had to go off and ask a few people. 5 minutes later she re-appeared with a tissue for me so immediately knew it was eye drop time. I am indeed special and required 2 different types of eye drops to try and make the muscles in my iris dilate.

Then I had a few tests, a scan of the back of my eye which was like watching a funky laser light show and quite fun.

Then I had the big event as it where a Fundus Fluorescein Angeiography Basically in super easy to understand Jemma speak they inject you with dye and then take loads of pictures of the back of your eye.

The dye is essential so that the doctor who gets the pictures can see the blood vessels and stuff at the back of the eye, its the whole point of the test. I was told about the risks and  that it would turn my wee florescent yellow, like the colour of Gus'  harness and that my skin would probably turn yellow too. when the dye hits the blood vessels of the stomach it would probably make me feel sick and quite often people are sick, sometimes people also become breathless and faint, and rarely people have a minor skin reaction such as a rash. Then I got the talk about the possibility of going into anaphylactic shock and death and the need for resuscitation.

At this point I defiantly started to get nervous, I love the way that after telling me that there was a slim chance of having a sever reaction and death the nurse took my blood pressure and heart rate! I'm sure you can guess what that was like.

Then I got injected with the dye, I was very impressed that the nurse managed to find a vein on her first attempt and in the dye went.

You will be pleased to hear that I didn't die instantly or puke all over them, but I did fell very sick and the room did spin for a few seconds and then all was fine. Oh and the nurse was right my wee is still very very highlighter yellow! 

So then I went and sat in the big waiting room with no comfy chairs or water fountains, even worse I was sat with a window behind me that had to be kept locked, it was rather hot! Luckily I was not sat there long and consultant called me in I'm going to abbreviated what he said and simplify it a bit.

Basically because I am short sighted and my eyeball is the wrong shape it has developed weak areas,  in these weak areas blood vessels have formed that should not be there. These blood vessels have popped a bit, it might have been a few of them or just one, so there is a collection of blood in the jelly bit of my eye. The blood will take about 6 months to be reabsorbed into my body and go away, but the blood vessels will not go away.

This is the bad news bit, there is every chance that I will have another submacular haemorrhage it could be bigger and completely destroy the vision in my right eye leaving me with nothing in that eye (my left eye is completely fine),  Or I could never have another bleed again.

Nothing can be done about the collection of blood already in my eye nature just needs to let it slowly filter away, which means I will have up to 6 months of living with this bloody floater popping in and out of my vision, trust me its annoying.

As for the blood vessels causing the problem, there is a treatment but it is not currently available on the NHS for my condition, so we would have to apply for funding.

It's very rare for it to happen to someone my age, because it is my most rubbish eye that has been effected the consultant I saw was a unsure as to in his opinion it is worth treating, I informed him that I don't want to lose the vision in my eye without a good fight first, so he is taking to the professor and will ring me next week.

I need to add quickly that this does not normally happen to people who are short sighted at my age, it sometimes happens to people with other eye diseases when the are over the age of 75 so nobody panic.

So in short I got a lot more info today about whats going on and although it is bad news I intend to fight if the professor thinks the treatment will improve the condition of the back of my eye, it will not get rid of the blood that's already leaked or make my sight any better but it could stop me having a giant hemorrhage and losing it all.

The eye strain is over

I have finnally recoverd enough to post in here, I have had the worst eye strain I have ever experenced, its been awful and ive been very grouchy and sorry for myself.

It all started when I brought a book, "one unknown" by Gill hicks. Its a really intresting book dipicting her life before and after the London bomings and her recovery, really gripping. unfortunatly not avalible in large print. Fuck it! I thought to myself as I brought it I will read it evan if it takes me a decade to compleate. I started reading it on monday and after an unkown period of time I suddenly found myself against a brick wall of, seriously bad headache blurry vision aned my eye feeling like somene was trying to pull it out with a spoon. I think it was worse because it was only my 'good' left eye that was affected, I cant see enough to read with the right, unless its in hugely massive print! As I said erlyer the eye strain was the worsed I have ever had, I could no longer read, text my mates, watch TV and most tragically I couldnt evan use the PC , evan with my screen magnification set to a bigger zoom than normal. I was cut off from the world stuck and bored, I was fustrated because I wanted to keep reading the book but my disability was stopping me, why cant they just produce more books in large print? I thought to myself in a low bored out of my mind moment.

Then again I sarted pineing, pineing for a DAISY player, all I wanted to do was read a book. The problem being That DAISY players start at about £250 , way out of my price range. I could loan one, with a years membership to the RNIB's DAISY libery, but evan that is out of my price range. But I continue to dream about having my own digital audio informaton system at my fingertips, college and later university could get the softwhere and put entire textbooks on to DAISY format wich I can then use to acess the same information as everone else with the same ease and without lugging lever arch files of bits of textbook around with me everyday!


On tuesday my eye strain was still evedent, and as I have allredy posted about I had a lovly trip to my local eye check up.

Then wensday was the big day my finall Guide dog assesment, it was the day wich deiceded if one day I will be a guide dog owner or not, it was very intresting. It started in a very intresting way, I whent out of the wrong exit of the train station and got a call from the center asking where I was and that they where waiting for me, I said I was stood outside the train station, I was then informed that there are actully 2 different exits and I was at the wrong one, I was also told they would meet me on platform one, so over the bridge I went to platform one, wich was seriously crowded by people, and then luckerly they spotted me! what a fab impression I made , getting lost before I had evan started the day!

The assesment started by meeting the other 3 people who where being assessed, and then having a small introduction to it all, we then went out on a short harness walk with an instructer . It was very odd we learnt how to follow the movment of the harness and the basic commands, we learnt how to turn left and right how to start and stop walking, whilst all the while tellign the 'dog' "good boy", it was strange talking to a GDMI (guide dog mobility instructer) like a dog, it got wierder still however. The next thing we lernt on this walk was how to correct bad behaviour, this invoved sentements from the instrucer like "im sniffing".

Next was a talk on genral dog care, what trainign is like, how the dogs work, vets and questions from us. we also lernt about safty whilst out and about and where told we are expected to wear a florecent sam brown or vest, I was incredibly pleased to hear that we could sign a disclaimer stateing that we took full responcibility for not wearing the protective clotheing providided. Thank god just the thought of wearing a florecent sam brown to college is horrific, saying that maby I could turn it into a fashion statement or evan better still start of a new trend!

Then we had lunch and another talk from a real guide dog owner who told us more about what its actully like to have a guide dog as a mobility aid, then made a compleat fool of myself again by walking in to the side of a sun umbrella, the rubber tip of it went strieght into my ear wich was lovly.

After lunch it was the exciting bit, we actully got to walk with a real life guide dog in training in publick, I was really nervous about this and makeing a compleate fool of myself, my dog was called Masie and was a very small labridor retriver cross and was a very dainty little dog, it was amazing putting in to work all the stuff we had done in the morning and it felt compleatly liberating to be walking, being led by a dog who I trusted compleatly and led around all kinds of obsticales from people to bikes, and bustops, it was amazing.

Then we went back to the center and waited for the results of the days assessments, we would eatch be spokern to individually so it was a very tence amount of time that felt like hours, none of us knew what to say and there was so much tension in the room its undiscribable, then we where called in one by one.

Then it was my turn and I was so nervious trying desperatly to prepare myself for the worst, but knowing deep down inside that I thought I had done really well and I couldnt think of anything I had done really badly or messed up, I sat there listerning to the the instructers just wishing for them to blurt it out but I had to listern to process what they where explaing to me then the words, "its a yes your going to be put on the list" I smiled and must have shown a great release of tension.

Then things got a bit complicated it was explained to me that I am now going to have a very long wait for a dog and that they where unsure weather it was the right diecsion for me right now they evan said " its not to late to chang your mind" !!!!! as if I would change my mind now this was compleatly what I wanted, what I have allways wanted to turn it down now I couldnt evan contimplate. They where also concerned because of my age (18 for those of you that dont no) it was explained that I couldn't take the dog clubbing and get drunk and things like that, I was slightly shocked that they made the judgement I was a wild student whitout really noing me, I hate clubbing and never go, as for drinking, I do not drink, I'm not supposed to drink on my medication so I dont! I do understand why they had to say all this and there resons but I htink they could have done it in a better way.

I left the center and got a lift back to the station where I called my mum and told her the news, then sent everyone a text message. I still felt a mixture of joy in that I had passed as it where but also a huge sence that I had been judged and people had deicided what I was, who I was purly based on my age, I think the could have talked about there concerns in a more positive mannor.

But I'm done with being annoyed now, I just cant stop talking about it and telling the intire world that I am on the list, I want to shout it from the rooftops.

P.S apologies for the spelling, the spelchecker is eather down or just not working, that or I have spelt everything right, which is highly unlikely!