Day 2 – The Simple Things in Life *

*Or NOT!

Today I am inspired by chatting to someone who has  only in the last 2 years become visually impaired. Meeting a relative newbie at the start of learning to live life independently with a sever visual impairment has made me think of all the little adaptations and things i do in a strange way without even thinking about it.

Take for example making a cup of coffee and carrying it over to your faviourte spot on the sofa to curl up and watch TOWIE (or whatever the latest TV craze is).  How do you get that boiling water from the kettle into the cup? Let alone carry the cup of hot coffee from the kitchen to the sofa around relatives, friends and animals without ending up wearing it?

The bottom line is you don’t I regularly spill boiling water on my hand when I make a hot drink, it does not scold me because by the time i have said a naughty word and waved my hand in the air the water is at a much cooler temperature. On Teaspoon going from jar to cup I always spill coffee and sugar. Not to mention just the other day I tripped over a shoe at a friend’s house and promptly redecorated her hallway with my cup of tea.

My mum rang me earlier today to tell me she had polished her shoes with fly killer instead of shoe polish, you find a can in the cupboard how do you know which one is which? The reality is if it’s not where YOU ALWAYS leave it then mishaps happen. In the past I have been washing my hair and accidentally used sun cream instead of shampoo which is a horrible experience because of the greasy nature of sun cream but it happens.

Yesterday I realised how lucky I am that I don’t have any food allergies, I was buying cake for a friend who does and it suddenly occurred to me that if I had been on my own I would have had no clue which cake would make her ill and which cake would be safe.

Best before dates… Need I really explain?

Think about walking down to your local corner shop, now imagine that with your eyes closed, does the thought of walking to the shop with your yes shut scare you? Then add into the mix all the things you could encounter on your journey; Pedestrians, cyclists, traffic, road works, pot holes, chewing gum, overhead branches, children, birds, wheel bins, lampposts, postboxes… There where some shocking statistics released a few years ago that 8 out of 10 blind people never leave the house alone due to fear and lack of confidence if you couldn’t see where you were going would you make it to work on time?

This is a topic I have written about before I realise both here (You know your a blind person when…) and on the BBC Ouch Website (How to **** in the woods) but the point still remains, things I do every day are different to that of a sighted person, for example right now writing this very post I am not poking at the keyboard or my computer screen, I like to write with my eyes shut and without and screen reader software so its just me and my fingers dancing across the keyboard. I type at my fastest when I  and not looking or listening to anything else and its something I really enjoy having the time to do on occasion. Of course when it comes to proof reading and editing my writing I do look at the screen but then still miss half my typos anyway! Sorry blogosphere your just going to have to put up with me writing utter rubbish that is not grammatically correct!

 

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Corneal Calamity

Well its been almost 2 weeks now since I saw a corneal specialist at the eye unit, meaning I now have 2 eye constants! For those not in the know the cornea is the clear window at the front of the eye, it plays a role  in shaping the eye and keeping it at the right pressure.

For a while now i have known I have a problem with mine, it all started way back when I started trying to wear contact lenses again, I was getting on fine with them, and gradually increasing the time I spent wearing them, not wearing glasses was great! As far as I was aware there where no problems until I went for a check up and it was found that my corneas on the other hand HATED the change and where dye was placed in my eye they shone back brightly in such a shade of fluorescent orange that the optometrist doing my contact lens stuff was utterly shocked and ran off in search of a camera. She didn’t find a camera but immediately stopped all talk of contacts and reffered me to see my eye consultant, this is probably approaching 2 years ago.

I was diagnosed with corneal oedema, basically flid filled sacks where forming on my cornea as a reaction to having higher than normal intraocular pressure (caused by Glaucoma) a change in medication and no more contacts for me and the general consensus of the consultants I saw was that all would be well.

unfortunately that was not the case, my corneas have continued to be cloudy, and got cloudier. To be perfectly honest I have not really noticed this except maybe when I am very tired I fund I struggled to read even large print as everything is just rather blurry. I was refered to  a corneal specialist.

Now we are back up to me sitting in the doctor’s office a few weeks ago, I was fully expecting on seeing Mr Corneal Specialist that I would simply have another change of medication and that would be that problem solved, what I was essentially told was totally unexpected and a total shock to the system.

It turns out I need a corneal transplant in both eyes, this involves taking the cornea from a donor (yes a DEAD PERSON) and implanting it into my eye, once my own damaged bit of cornea has been removed.

This is because the cells right at the back of my cornea are dying as a result of all the surgery I had as a baby that saved my sight in the first place, apparently it’s happening to everyone who had the kinds of surgery I had back in 1988. My cousin born a few years before me with the same eye conditions has exactly the same problem. So the death of the cells in the back of my cornea is causing them to break away from the rest of my corneal float around and get in the way turning all cloudy and full of fluid.

Cornea transplants are quite common and are more often than not successful and rejection is relatively rare, and if the worst does happen they simply repeat the surgery. However for me there are more risks, my eyes are smaller than average and I don’t have a lens which is normally critical in helping the eye keep its shape during the surgery.

On the plus side the surgery might improve my vision, I say this but too much of an increase of my vision would defiantly be a negative for me. I have always been at very best partially sighted, if I was offered a drug that could get me full sight tomorrow with no risks and a 100% guaranteed success rate – I would not take it! I am happy the way I am being blind is part of my entire identity I have never really known any different to suddenly be fully sighted I would struggle to cope with such massive life change.

On the other hand the surgery might not work, it could all go terribly wrong and might damage my vision further.

However by far the worst case scenario is that I do nothing, slowly the condition of my corneas will deteriorate and I will lose all the vision I have, the amount of pain I experience in my eyes would also increase. This scares me, as much as I don’t want to be fully sighted I don’t want my vision to deteriorate dramatically either, I value the eyesight I have enormously and the thought of going totally blind is heartbreaking for me, it would without a doubt turn my life upside down, as it would with anyone.

It’s been a difficult few weeks trying to work out what I want to do about all this ready for when I speak to Mr Corneal Consultant again in a  few months time, the decision actually seems clear, I have to go for surgery and just hope an pray everything goes to plan. To further complicate matters I am not ashamed to say I am rather phobic of hospitals, them make me incredibly uneasy. I am lead to believe that the surgery requires a 2-3 day stay in Hospital. I can just about cope with a visit to the eye unit the thought of spending time actually IN hospital scares the pants off me – As it would lots of other people I’m sure.

I see Mr Macular Consultant at the end of this month and there was talk when I saw Mr Corneal Consultant that I need to see a Glaucoma specialist as well as things are not to stable in that department at the moment either, apparently I may have come to the end of the road when it comes to glaucoma medication too, meaning I might need more eye surgery to do something for my glaucoma too.

Overall in it’s a particularly unhealthy time for my eyes, but there is still hope!

For those who like to watch disgusting things here’s a link to a Youtube Video of the type of surgery I need, I warn you it’s not nice to watch!

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.

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’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

The slug chronicles

Now think about this have you ever stepped on a slug? The answer is probably yes, but then have you stepped on a slug whilst wearing nothing but socks and whilst carrying 30Kg of guide dog? I thought not!

This was the scene last Monday night, Ian my mums 9 year old guide dog had just had a big operation on his mouth, he had been allowed home but was very, very sleepy. He had not been to the toilet (of any variety) for about 10 hours -based on this we were sure he needed to go.

His legs however would not carry him, he was like a very, very drunk old man he got a few paces and then simply collapsed.

Slowly with a lot of my help we were edging towards the back door.

There are however 3 steps to negotiate before making it onto the grass area, I had to make a call I was concerned he would not make it down the steps without landing on his face.

That was it then I had to carry him.

Now lets have a little reality check here, this is me Jemma Brown  –  the girl who can’t see a thing in the dark and who does not posses any balance, carrying 30Kg of dog down some steps in the dark!

Well I did and Ian and I both survived… just!

It was almost close for a moment, as I took the last step onto the grass still carrying Ian I stepped on a slug and my foot slipped forward under the slimy mess I had just created.

Luckily it did not slide far but it left me with dead slug entrails the entire length of my sock.

My socks has now gone to the landfill heaven in the ground.

There is a moral to this story, if you are a little on the blind side and ever have the need to carry your guide dog or as in this case someone else’s guide dog outside apply shoes first!

BBC NEWS | Text lifeline to help deaf people

BBC NEWS | England | London | Text lifeline to help deaf people.

 

This is something that particularly intrests me, I have a level one British Sign Language qualification don’t you know, how many partially sighted people do you know that can sign? So anyway partly as a result of this I have a few friends who are hearing impaired so a story like this naturally caught my slightly spazzy eyes.

However what I really wanted to blog about however is that on Friday evening I made my very first 999 call, how exciting is that?

A local wooded area had once again been set on fire, there was a lot of thick black smoke and flames big enough for me to see sat in the front seat of my dad’s car so out came the mobile phone and followed by the fire engine!

So its wonderful that this story all about making it easier for disabled people to contact the emergency services was very interesting.

Guide dog : the full story!

Well by popular demand by Seahorse I am going to tell you the full details of my application for a guide dog and some background…. i am most probably going to bore you all stupid.

Background

Well in case you hadn’t already gathered I’m rather partially sighted, I was born with cataracts, squints and really small pupils lots of surgery later I have Glucoma as a result of the surgery’s and my pupils can’t react to light and dark, meaning I’m night blind and struggle to see when its sunny and glare is definitely an issue. I also live in a hat (you might have seen my entry titled hats and pubs here).

My eye condition is genetic, my mother has it to. The surgery she has was very unsuccessful, as a result my mum is registered blind and can only see light and dark she has a guide dog called Ian. (there both in the pic on the left)

I also have a Blind auntie, who can see more than my mum and a partially sighted cousin… so theirs lots of us in the family.

Guide dog : the journey so far.

On my 18Th birthday I had a conversation with my mum and dad about applying for a guide dog, they where slightly sceptical but said they wouldn’t stop me so on the 31st of October last year I made the call to start the ball rolling.

My first assessment

was all about what its like to own a dog and to give me more information about applying and what the process entails, its just a friendly chat about how the organisation works. Also I received a self declaration medical form, this is to insure that I’m fit and healthy enough to train with a dog, in my case they then wrote to my GP to check they agreed I would be able to train. Also we talk about my lifestyle and my future and start to get an idea of what dog would be suitable, if I get that far.

The mobility assessment

This was the bit I was most worried about. In this assessment the mobility assessor does a quick assessment of vision, field vision and asks lots of questions about what I can see whilst out and about and about the routes I do on a regular basis, and what forms of public transport I use. More lifestyle questions and then the bit I was most worried about, the assessment walk. on this I demonstrated my long cane skills and my pace, straightness, and road safeness. also there was a traffic assessment to see when I can see and hear cars coming and weather I can see cyclists and stuff.

Now

well that’s all I’ve done so far, slightly abbreviated.

I got a letter through on Saturday saying that my final assessment will be on the 1st of august. In that assessment I will travel to the nearest center and meet a GDMI (guide dog mobility instructor) and go on 2 assessment walks, where I will work 2 different dogs. it will be very nerve racking stuff. At the end of the day the decision will be made as to weather I can go on a waiting list for a dog.

I’m both extremely nervous and excited about the prospect, I will be absolutely gutted if they say no at the end of the day, if they say yes I will be smiling from ear to ear.