Spurred into action

Well bloggers its been a while quite frankly hasn’t it? In truth I have been rather apathetic when it comes to keeping the blogosphere updated in the world of Jemma Brown, this is in part has been due to sheer busyness but also a slight lack of motivation.

However this morning all that has gone I am ready to blog I am unsure as to whether it is the sleep deprivation, the mixture of caffeine and sugar rushing through my system or just my puzzlement and need to share it with someone who will understand – not that I totally expect this blog post to be understood by the masses. This last view point is not because it is complicated but because i myself am confused.

I’ve just read that NICE is withdrawing funding for the cancer drug Avastin.

The article is sketchy but this is a worry for me, Avastin is the drug that I periodically have injected into my right eye to help prevent the impending explosion of blood vessels that will without being kept in check result in my loosing all the vision in my right eye.

The treatment I have received three times now (I think – it might be two, I honestly can’t remember) without it I would have lost all the vision in my right eye by now. Don’t get me wrong my right eye is rubbish, it has always been the less useful of the two but as i am sure my readers will appreciate any vision no matter how little is precious.

So anyway back to the point in hand I am still researching as to whether the drug is also being withdrawn for its use in the treatment of Wet Macular Degeneration… Its a complicated issue so I am going to just ask my consultant when I see him next week.

You Know You’re a Blind Person When…

Last week I read this article by Charlie Swinbourne Titled “You Know Your Deaf When…(Part 1).

This of course got me thinking of the you know your blind when hilarity this is something I have often discussed with blind mates and it stuck me that I have failed to post something like this before. Thanks Charlie for bringing it to my attention!

I must say all of these things you are about to read are true and have happened.

I would also like to add that if you have your own additions to the list you are about to read stick them in a comment with your name, URL and whatever and I will add them in!

Ok so after all that…

You know you’re a blind person when…

  • You accidentally wash your hair in factor 30 sun creme.
  • You don’t have a single pair of matching socks.
  • You hand your sister a container which you think is shampoo, your slightly less blind sister manages to see that it is in fact Hob Bright oven cleaner.
  • You go on holiday and accidentally come back with someone else’s Guide Dog.
  • You persuade a friend to play darts with you and hit your friend in the leg when it’s your turn.
  • The phrase ‘Blind Drunk’ has a totally different meaning to you.
  • You are totally unaware that the city you live in is completely consumed with fog… it always looks like that to you!
  • You HATE the idea of Shared streets!
  • You hate car drivers except when they are driving you somewhere.
  • Because you have some vision strangers refuse to accept that you are blind.
  • You get told off by the Police for walking into a bollard, they think you have had enough to drink already; ON YOUR WAY TO THE PUB!
  • Having a Guide Dog or cane means you never get ID’d in pubs.
  • You have full conversations with what you think is your friend, you later discover she’s not actually there.
  • Walking straight past the person you are supposed to be meeting is a regular occurrence even if it is someone you know well such as a parent.
  • Reading the cooking instructions on the food you purchase is totally impossible so you guess.
  • A person walks up to you says your name and starts a conversation you talk for a bit and they leave… You still have no idea who it was.
  • What colour are my trousers?’ is a perfectly reasonable question to ask a date.
  • You high-five the persons face instead of their hand.
  • Other people tell you to ‘watch out’ and then apologise and get all embarrassed.
  • You don’t care about 3D.
  • You stop traffic… With your cane/Guide Dog.
  • People you meet tell you all about their blind aunt flora (or other relative) and ask if you know her… After all, all you blindies know each other well.
  • The thought of you running scares your off duty Guide Dog so much that he proceeds to jump on you to make you stop.
  • You wear ear plugs to gigs… your ears are very valuable.
  • Walking along you hold on to your friend’s arm EVERYONE assumes you’re a couple.
  • Audio Description gets you VERY excited.
  • You forget that the friends you are meeting can see, you text them telling them exactly where you are sitting instructions on how to navigate to your position and what colour jumper you are wearing.
  • ‘How long is your cane?’ is a totally innocent question.
  • You spread Marmalade on your toast and take a big bite… Only to discover its actually mustard.
  • You walk into glass doors.

I’ve Had A Needle Stuck In My Eye AGAIN!

It’s official on Tuesday I visited the eye unit and had my second injection of a drug called Avastin.

The aim of this needle poking is to make some blood vessels at the back of my eye that should not be there wither and die! It’s these tiny blood vessels that cause hemorrhages that damage my Macular that then lead to vision loss.

The process of being injected involves having lots of rather stingy local anesthetic eye drops placed in you offending eye. Then the whole area is cleaned with orange surgical grade antiseptic including the eye-ball. Then more this time slightly less stingy anesthetic eye drops. It’s at this point things get interesting a clip is then applied to hold both the upper and lower eye lids open, this is not to fun and I did feel some discomfort all the way along with the clip on my eye this time.  The big guns then come out local anesthetic is then injected underneath the cornea in the area around where the injection is going to go, this also stings a bit.  Finally it is time for the final and biggest needle yet the one containing the Avastin. The only way this can really be described is its like someone poking you in the eye with a needle the initial area where it goes in is numb but as soon as it pierces the white area of the eye it hurts.

Upon leaving the hospital I was given the advice that my eye would probably hurt later and that I would probably need to take some painkillers inside my head I was thinking actually I need some right now!

Tuesday and Wednesday my pain was on and off pretty bad its like someone has punched you hard in the eyeball alone, in effect your eye is bruised. I will say this time I looked less like something from a horror movie as my eye did not go blood-red.

Blinder

Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.

I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.

Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!

I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and  be the same for ever. Oh how naive I was!

Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes,  especially the right one is not good.

We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.

The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.

A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.

I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.

Positives will come out of it,  I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!

Further Vision Loss

On Sunday I had been back from Church say about 30 minutes when I noticed what is affectionately known in the eye business as a floater.

For me given my previous Sub-Macular hemorrhage this rings alarm bells in my brain.

After a brief spell of panick and trying to work out what to do with myself I rang ahead to Eye Casualty to let them know I was going to head in.

One £10 Taxi fair later I was stood outside Southampton’s Eye Casualty but was totally unable to go in. Not because of some anxiety driven panic that froze me to the spot but because there was a keypad with lots and lots of buttons and a small intercom with yet more buttons on it just above. There was also a very small water damaged sign that I presume said something important but I honestly have no idea. So there was only really one thing for it, I stood there and pressed buttons totally randomly and hoped for the best… This was far from successful and after some time had elapsed I pounced on a woman walking past and asked her to help.

When I got in I announced my presence to the nurse booking in patients and composed myself. This is necessary because the Eye Unit complete with Eye Casualty can be a stress full and incredibly dull place. 

Regrettably I went alone, just myself and Gus. I could have really done with someone to come with me but also did not want to worry my parents or friends on the odd chance that it was absolutely nothing to worry about. Not to mention the inconvenience to my friends if I rang and asked them to come down – I realise now this was totally stupid but it’s how I felt at the time and I guess I was simply in denial!

After some time the tests commenced: Distance vision test, blood pressure, blood sugar, pupil reaction, intraocular pressure (IOP) and ultrasound. I was rather intrigued by the ultrasound scan, I had never had one of those before and did not know it was even possible to scan an eye, but it is.

By this point I knew what it was and was simply waiting to hear it from the doctor.

Several doses of pupil dilating eye drops and 20 minutes of waiting for something to happen to my pupils. The doctor was able to get a semi-decent view of the back of my eye and confirmed a new haemorrhage in the back of my eye.

This is obviously pretty devastating, its means further deterioration and uncertainty. There has already been damage done to my vision by this bleed and I am left to wait to see what happens.

So all this happened on Sunday and I was been told if I have not heard anything within 2 weeks to give them a call and chase things up. Considering the state of the administration at Southampton Eye Unit and the problems I have had with appointments previously I don’t hold out much hope so have already phoned my Consultants secretary to chase this up.

I am yet to see or even hear from a consultant about this, so I am left in total limbo with no idea what is going on. I have no prognosis for this bleed, no idea whether I will again be able to have off label treatment with Avastin and even more worryingly no idea if the blood vessel at fault is going to leak more whilst I am left to wait.

I am incredibly thankful to the guys at the Solent CU and Church that have already prayed for my recovery. If you are so inclined and have the time please send out a little prayer for me.

  • The Previous haemorrhage can be found in the following posts (In order of appearance)
  1. Today’s visit to The Eye Unit
  2. Eye Casualty
  3. The Consultant Calls
  4. I am going to fight
  5. No Pretending
  6. The effect of it all
  7. I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!
  8. Avastin is go!
  9. When they said ASAP they meant it
  10. My day on the ward

The iPod Touch Edition

Hello and may I start by saying I hope you had a fantastic festive season whatever it was you were celebrating.

I have had a most fantastic time myself, we had a somewhat unorthodox Christmas as we were unable to have a christmas tree in fear that our furry friends would simply destroy it. Still Christmas Day was a relaxed affair, presents followed by a beautiful walk around Stokes Bay beach for us all.

Boxing day I went to stay with my other half who surprised me with lots of VERY lovely presents.

The biggest surprise was the iPod Touch I am using to write this.

Those who know me well will know that I was going to buy myself one with my student loan eventually comes through. I have been going on about how much it would enhance my very existence for some time probably driving everyone totally bonkers.

When the iPod Touch with inbuilt text to speech and full screen magnification was launched it went straight on top of my ‘Thing;s I’m going to treat myself to when my loan comes through’ list.

My opinion of its Text-to-speech capabilities it’s utterly fantastic and completely revolutionary I would really recommend it to any blindie who wanted a new MP3 player or for that matter a new phone.

It’s just as good as I imagined and continues to astound me with its sheer greatness.

Not the worlds most objective review I know I will get back to you with a better one at some point.

I Need Some Help…

This is a little random but some of you will know that I am a bit into art. It’s a bit of a long and in places painful story but in the last few months I have really got my creative juices going again after a long time where they where absent.

So why do I need your help?

I need a name for the blog I am going to create to host my drawings.

I have no idea what to call it; I think influencing factors when choosing a name need to reflect who I am, my disability(s) but also be light-hearted.

So come on people let’s get going with some suggestions!

I’m Still Here

I have not quit blogging, died or had some terrible accident that has resulted in the lack of posting – I have just been very busy.

A woman with a white guide dog sat on her left

Mum and Tara

University is as hectic as ever, things still fail to run smoothly it seems like the rest of my formal education at university is going to be an uphill struggle against inaccessibility, primitive attitudes towards inclusion and a complete lack of organisation that runs through the place. In short its not going to well, is very stressful but also interesting/fun.

Whilst on the subject of education I did not escape the funding crisis of the student loans failings. Admittedly I applied late but I am still to reciee my student loan. There have been multiple phone calls to my LEA (Local Education Authority) and I am assured it will al be sorted within 6 weeks. Here’s hoping I get some money soon it has been a seriously living on the breadline.

A lot has happened since my last post here, my eye condtion has stableised which was a nice surpise, I never really know how long that will last but its  a bit of a relief.

I now confess to having a bit of a caffeine addiction. I have discovered the wonder that is an expresso and its good! I love a good coffee more than I ever have before. Redbull and other highly caffeinated drinks have got me through some seriously dull lectures and for this I am thankful.

My mum’s Guide Dog Ian has retired and she has trained with a new guide dog called Tara. So now as I am home for Christmas we are a 3 dog household which is a bit of a shock to the system for all of us dogs included.

I have a job! I work 10 hours a week from home or uni or wherever I am really. I am a community executive for a word of mouth project at uni. I recovered from the train journey to get to the training and the 5 days of basically being stuck at a service station in the middle on nowhere with internet at £5 an hour!

Mark and I

I am in love, for those of you that don’t stalk me on facebook I am now in a relationship with a fantastic guy from the Hampshire VI Cricket team called Mark. He also did the Guide Dogs sponsored event that I roped him into.

Writing of cricket I should also mention that I am now joint player welfare officer for Hampshire VICC. I am sharing the position at the moment because I have to do a few courses in child protection before I can officially take on  the role but it’s still great stuff.

This first term at uni I have also found faith in the man upstairs, I go to the christian Union at uni most weeks and also go to Life Church Southampton. The CU guys are a fantastic bunch and very kindly brought me a large print bible which means the world to me. We also went Ice skating together Just before christmas I can’ ice skate but went along anyway and it was a great evening dispite it being really cold!

Heres a few of us in Winchester, I’m not quite sure who took the photo, if I was I would attribute it but hey ho, it’s originally from facebook in the public doman so please don’t sue me people!

A Group of people

CU and Friends Iceskating 09

Train Travel floored

I write this sat in a hotel connected to a garage in the middle of nowhere the hotel has wifi but charges a whopping £5 for one hours access – which I refuse to pay.I am in the middle of nowhere a £8 taxi journey away from Didcot train station, I am here unpaid on a course for the job I am doing at university this year.

To get here I got a volunteer to drive me to Fareham station where I met a support worker and got on a train to Southampton from there we got on another train headed for Oxford, we had to get off at Reading station and change trains again to get to Didcot.

All was going well until we reached our second train, upon boarding it became apparent that the train was hideously in accessible. We asked where the wheelchair area was assuming there would be more space, on getting there we discovered that it was literally an empty space with a small table off to one side.

The train was rather busy and full of older people, who where insistent on sitting down first and finding there reserved sears.

This created a battle field incorporating train staff, my support worker, me Gus and a million grumpy old farts that where fully prepared to pushed there way forward not caring who they ran over with there suitcases or stepped on.

My support worker put her bag down on a chair closest to the wheelchair bay only to turn around and discover a woman had picked it  up and was about to move it somewhere else. There was carnage in the carriage, people and bags everywhere refusing to move to let other people past because there booked seat was that way and they wanted to sit in it now.

The train was delayed by 6 minutes whilst the gridlock continued with train staff and other passengers shouting at large amounts of old farts to move out of the way and let other people such as myself past.

Eventually after much shuffling and complete disregard to other people the large groups of old farts sat down.

Then I discovered that the wheelchair seat had no seats around it, basically there would be space for Gus but not for me. None of the seats around it had any room for Gus to lay under them so what was I supposed to do?

In the end I sat in the wheelchair space on the floor for over an hour and a half, I spent this time having poor Gus being stepped on even after I had warned people that he was there, I was also stepped on, people tried to block us both into the space with bags and even tried to wheel them on top of us.

I remain utterly disgusted by this, I was basically a piece of luggage, one particular old fart of a commuter stepped on Gus  after I had already warned her that he was there, I pointed this out to her and then she patted me on the head and apologised, I was fuming!

Then the guard came through the train and I asked him a question he turned around and answered talking to my support worker instead of to me, referring to me as she and stating that they have special assistance “for people like her”.

I snapped I told him to talk to me not about me I was on the verge of rude but I had had enough by that point.

I have never had a train journey that bad, I am honestly appalled by it I have heard horror stories from other disabled people that have had horrific train journeys, but I have always felt positive about travel by train and enjoyed it as a largely stress free experiences, but now the tables have turned, my journey was utterly horrific thanks to the train company for not training its staff as to how to talk to disabled people, not making there trains accessible and the other passengers being horrible old farts who only cared about themselves with no consideration for others – I hate people that are so selfish!

Snow Leapord – What The Media Have Forgotton To Tell

Apple – Mac OS X – Accessibility.

Snow Leopard the latest update to the popular Leopard operating system installed on all modern day Mac computers has got an update, it’s only a little one and mainly focuses around bug fixes, it’s not a complete overhaul of the way the system looks but at less than £30 you would not expect a miracle.

Opinion as I have understood it has been divided, many see snow Leopard as a bit of a waste of money and time, its well documented how it is faster than Leopard (which I have never found slow).

There are a collection of features that have not been spoken about in the public eye that I have seen in any way and that is the updates to the already good accessibility tools.

To put this into context most of the time I use something called Text- To -Speech or more commonly referred to in is easier form of TTS or a Screen Reader. For Mac this is something called Voiceover. Basically a lovely little American man called Alex reads me everything that happens on screen, all the things I would struggle to read. I navigate through different windows and applications with ease and am able to for the majority of my time edit the two websites and one forum which I own and manage solely using this software.

Its hard to explain to a person that has never used TTS but when Apple created Voiceover they took the manual on making TTS engines and threw it off  a plane before passing it through a mulching machine and stamping on its mussy remains. Voiceover is unique anyone can use it straight out of the box, no additional software needed.

A blind person can go along to an Apple store and say ‘I would like a MacBook please’, pay for it  return home open the box and use it straight off. Apple are the only computer and software developer to do this, they are incredibly committed to accessiblity and see there products as the way forward, even the iPhone3G S now has Voiceover and can be used by visually impaired people.

With the Microsoft  counterparts we all know and… hate that is simply not possible, you would have to purchase your laptop then spend an additional £800 on software to make it accessible and then install the software.

Snow Leopard is once again revolutionising the way that blind and partially sighted people use their computers TTS engines have forever relied on the keyboard to allow users to navigate their way around their computer, this is no more.

With Voiceover and Snow Leopard OS X 10.6 users can now not only navigate with the keyboard but also with the touch pad on MacBook’s using gestures. Now that for many people may well be the closest they ever get to using a computer mouse, something that if you have severe visual impairment you are seriously unlikely to ever do!  Voiceover is more powerful and better at handling complex web pages with the new release which will be very welcomed by many as there are certain web pages that Voiceover currently just does not have the power to understand.  For example the webpage I am writing this on right now, Voiceover cannot cope with all the information and the styling of WordPress, which is as much down to the design faults of wordpress as it is to the lack of Voiceover grunt. With increased power I hope that Voiceover will overcome the WordPress accessibility issues, but time will tell.

I must now buy Snow Leopard and quickly.

Alas I am not the only person jumping up and down giggling with technology fuelled excitement whilst drooling slightly at apples accessibility my freelancer friend Lesley Smith has decided to convert to the ways of apple, mostly because of the accessibility features I have just mentioned and a fair amount of persuading from me.