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!

No pretending

I have spoken to my consultant again, turns out the treatment he was telling me about is not a long term option.

The injections only destroy the blood vessels for about 4 weeks, then the blood vessels grow back.

So it's not a long term treatment.

So the long term is;

I am almost defiantly with medical science in its present state going to go blind in my right eye, very little can be done about it.

It's time to stop pretending everything is going to be OK, I'm going blind in one eye, nothing anyone can say or do will make that any better its going to happen, sooner or later.

Of course the great thing about going blind due to haemorrhaging is that there is no telling when, I could have a huge haemorrhage tomorrow, or a tiny little one or I might not have another one for 20 years, by which point there may be some form of cure.

So I have in the last month gone from having an eye condition that is not curable, but not deteriorating any time soon, to having a problem with my right eye that's going to result in having no vision in that eye.

Life will go on, I will get used to the idea.

Eye Casualty

After a night of worrying and not hearing anything I got a phone call from my mum who was equally worried, she (with my permission) rang The Eye Unit to find out what was going on.

She was told basically that I needed to get to Eye Casualty as soon as possible.

So I got a few bits together got ready and headed out.

I got as far as the PELICAN crossing outside my halls and had to turn back, someone had smashed a tonne of glass all over the pavement and the crossing, I can't see glass so only knew when I was already stood on it.

Gus cut his paw, he refused to move so I did what I am trained to do in situations such as this, I picked him up, I got a few paces and he decided he was not having any of it so bit me, I dropped him, it was a true comedy moment, he did then decide to move however! I dashed back to halls and the residence manager bandaged up my dog and cleaned the wound, it was very small.

Then there was the frantic OMG I don't know what to do panicked phone call to my mum, who told me to go straight to Eye Casualty because they where very concerned and sort Gus out later on.

So I got a TAXI to Eye Casualty saw the receptionist, who again could not find my notes.

I sat for an hour or 2, had a distance vision test and waited a bit more.

My notes where somehow found and I saw a doctor.

The doctor apologised for me being told to go in to Casualty, and told me that the doctor I saw yesterday had written a letter to a consultant to get him to look at my notes, the consultant would then decide when I needed to be seen and what tests I need and I will get a letter in the post.

In the meantime my macular has been bleeding, and they have no idea why. There is nothing they can do at eye casualty because they only deal with problems at the front of the eye there. 

However if it gets any worse before I get a letter I need to ring them up straight away and head down, they can't do anything about it in eye casualty but they need to know.

So I have to wait for a letter to get loads of tests done, who knows what it is so its still just a worry at this stage.

So I left eye casualty having completely wasted my time and TAXI fare and a whole day I could have spent working on the 3 assignments I have due in eminently and headed for coffee.

Got coffee and rang vet, got  an appointment.

Got the bus into town then got more cash out (TAXI's are VERY expensive) and another coffee and headed to the vets.

Saw the vet who commended the managers first aid skills, he had a good look and discovered that there was in fact some glass in Gus' foot. 

Gus was an angel and laid there rolling letting the vet have a poke around and try and get it out, he kicked the vet a few times, who was incredibly patient with Gus. 

The Glass would not come out so the vet and I decided it would be kinder to sedate Gus to get it out.

2 and a half hours later Gus was still very not with it and now had a lovely Green bandage and we where heading for another TAXI home.

At the time of writing he is a lot more with it, but is not a happy bunny, he is currently sitting on his bed giving me evils asking me to make the bandage on his foot go away.

It took him forever to come round from the sedation, I got back to halls and dropped a piece of pepperoni on his face and he did not even notice.

Today's visit to The Eye Unit

Well today I had my 4 monthly trip to The Eye Unit in Southampton, its a bit of a sausage factory and has all the issues any eye unit has, its like walking into a day centre or old peoples home, I'm still at the age of 20 the youngest person there by about 30 years but hey-ho its all part of the fun. I planned to get the bus after producing the days news bulletin for our student radio station, unfortunately the studio broke and what with one thing and another I was running late so splashed out on a TAXI. In my complete paranoia of being late, what happens I was an entire hour early! Anyway I signed in, did the distance vision test, which was a bit of an eye opener. They have got new electronic eye charts that are remote controlled, its no longer possible to cheat the eye test how upsetting is that! So anyway eye test done I went to wait to see the doctor an hour and a half winds by, I'm listening to my ipod, a million and one conversations that are going on around me and the sound of Gus moaning with boredom under my seat. Then my ears prick up its now 12:30 ish and I here a man behind me say that his appointment was supposed to be at 9:45 and that he has not been seen yet.

I then have that feeling of dread that tells me I am probably in for the long hall and that I should make myself comfy, maybe even get my laptop (her name is Lilly) out and do some work.

Then a nurse makes an announcement, the doctor I am supposed to be seeing is not in today and his replacement is a medical student, this is what is holding everything up. Then the good news, the other doctors have all finished there clinics now so are helping to clear the backlog.

Great I might actually be out of the eye unit by my next birthday! (October 31st if any one's that interested.)

15 or so minutes later my name is called, it should all be quick and painless from here.

So I'm talking to the doctor she is a little horrified by the presence of my guide dog, she has a VERY quick look at my eyes then measures my Glaucoma score, doesn't check them again, I could tell it was a bit of a quick get her out clear the backlog type examination. I am a bit of a specialist at being examined by eye doctors and medical students and have been round the opthamology block more than a few times. She tells me everything is fine my pressures are great and that there are no causes for concern.

I have a cause for concern, I have a small amount of debris in my right eye, its just remnants of scar tissue and stuff like that, every now and then a bit pops up, floats around a bit and I get a shadow in my vision, sometimes they are even pretty colours. I wasn't really to concerned, but on Friday I got a new little floater.

I still have it now sat here writing this so thought as it has hung around for quite a long time I would run it past the doctor.

Doctor has a slightly better look at my eye and looks very concerned, then announces that the back of my eye has been bleeding, it might still be bleeding, I need to see the consultant and what have I done with my notes. 

It was literally those statements in roughly that order, at this point I got scared, and said that I had not at any point had my notes so didn't know where they where either.

So anyway doctor goes off to ring consultant, she pops back to tell me that she can't get hold of him so is going up to his office because he is probably by now on lunch.

So I'm sitting there and I realise I am completely pinned to my chair by the table that swings round with all the technical stuff on it. I try and push it away a little bit but its locked in place, literally on my lap, the building could burn down and I would be stuck there forever. I'm not a claustrophobic person on the whole but in that minute I was starting to panic.

Luckily a nurse swung by and I was like 'Let me out I'm being claustrophobic' one nice nurse and a glass of water later and all was fine.

Doctor reappears and says she can't find the consultant or my notes. She doesn't know why my eye is bleeding, or if it is still bleeding, or what to do about it, BUT it could be really dangerous and permanently damage my vision and I might need surgery to sort it out. (great, in my head I am shitting my pants)

She takes my mobile number encase they need me urgently, if no one rings me I will get a letter through the post, if I don't get a letter I need to ring up and check I have not been lost in the system.

It all makes me have great faith in our NHS system, don't get me wrong I love the NHS its a great invention and we are very fortunate to have free health care in this country, but wow losing my notes, missing that there is a potentially serious problem with my eye, then not being able to find a consultant to sort it out makes me worry a bit.

So anyway I am left to worry about what the future holds for my right eye and Wait for the phone to ring or a letter thorough the post... or to be lost in the system.

I have decided I am giving them a week if I don't here anything I will chase them up, but of course I am now on red alert as it where, if anything worries me before I hear from them I will be heading to Eye Casualty straight away.

It's all rather worrying really.

Crazy again

This post is therapy I will say that from the off set it is for my own benefit to get things out there so they are not just in my head.

After 8 ish months of being on antidepressants but psychologically well, I'm depressed and ill again.

If I am honest it snuck up on me covering my world with a big black blanket, removing the colour from my thoughts, I saw it coming so tried to take action, but nothing is immediate and now the situation is deteriorating. Whatever action I take has a waiting list, I have to carry on in the dark and Wait for my turn to get help.

I'm back in a place I thought I had left behind, with behaviours I thought I have left behind.

I am now already struggling with the day to day of university life, my insomnia has got so bad, that when I eventually fall asleep (usually sometime between 4 and 5 am) I literally cannot wake up in time for my 9am lectures. My body says that it is tired and I turn every alarm clock off in my sleep, sometimes walking across my room to accomplish the task.

Assignments seem impossible.

The evaluation assignment we have just been set is terrifying, at a time like this when I am not well I can't see the things that I am good at, I see every mistake I have ever made, I think I am crap at everything although that is possibly not the case.

In a way its good that I have at least recognised that I am unwell again, that's part of the battle isn't it admitting that you have a problem.

How did I get here? Is another part of the battle, I think I have been warn down by stress and recent events reminding me of past negative experiences.

So that it then I'm back to crazy depressed anxious Jemma, waiting for help.

when to give up

Its a question I am asking myself, when do I give up trying to help members of the course team understand me?

I have been studying the universities student complaints procedure, I don't want to use it, but I am seriously running out of options.

It would be true to say that right now things have reached a crisis point, things should not have got to the stage where a lecturer and myself are shouting at each other across a lecture theater. I am sure many of you reading this are fully aware of the situation I was put in on Wednesday, I am not an aggressive person, but when I am shouted at because a so-called lecturer does not possess any understanding of my disability I have to defend myself.

The access issues I have faced since being at university have somewhat surprised me, I always knew that I would face challenges and access issues but I  hoped that lecturers would work with me not against me to smooth any issues.

I am having one final attempt at solving these issues informally. Next week I will be having a number of meetings with members of the course team, if things cannot be sorted out then it will be time to start the formal stage of the official complaints procedure.

I am going to end this blog entry with a somewhat desperate plea, I consider myself to be an independent person but I cannot continue the way things are at the moment, I would  ask others to speak out about the way I am forgotten if they witness what is going on.

I do this in understanding that many of you do not feel able to speak out on my behalf for fear of being patronising, I promise you I will not take that view point, if you feel able to act please do. I need as many people to hammer the message home, if lecturers will not listen to me or the disability support people then my only hope is to irritate them into compliance.

About me

I was recently asked to write a piece all about me and disability, the scope was to challenge perceptions and raise awareness of visual impairment, this is what I came up with.


About me
By Jemma Brown

Hi I’m Jemma I’m 19 and about to start at Solent University to study journalism. I currently live in Gosport although I will be moving into halls in a few weeks with my guide dog Gus. I have multiple disabilities including visual impairment and a mild mobility impairment. I have the philosophy that I can do pretty much anything, it may take me longer, I may do it in a different way and it may be more difficult but I will do it. This is all about my disability and how it affects my day to day life.

The eye stuff

The eye starts to develop from 12 weeks of pregnancy, when my eyes where developing they did so with a cataract, this damaged them in many different ways, leaving me with a collection of eye conditions. I was diagnosed as having eye problems when I was 8 weeks old I then had my first operation to remove the cataracts at 11 weeks.

My mum also has the eye condition as it runs in her side of the family, although she has considerably less vision than me. I also have a blind aunt and a partially sighted cousin.

Throughout my childhood my vision varied, at one stage it was thought that I may one day have enough useful vision to drive, however that was not the case.

Because of the cataracts the pupil in my eye did not develop as it should have. I had surgery when I was younger to make my pupils bigger as they where too small. As a result of the surgery my pupils cannot get bigger or smaller to adjust to changing lighting conditions. This means my vision is considerably worse in the sun and when there is not much light.

When I was 11 my eye condition deteriorated, as a result of the surgery I had when I was younger, the fluid inside the eye ball was not draining away properly causing increased pressure in the eye. This is known as glaucoma and is relatively rare in people my age. The build up of pressure inside the eye can damage the optic nerve leading to irreparable loss of vision. To attempt to control the pressure inside the eye I was put on medication, and have been on several different treatments.

Unfortunately in May of this year the pressure inside my eye was found to be higher than it should be, up until that point my glaucoma had been under control and stable for the last 4 years.

As mentioned earlier I have quite an extensive collection of eye conditions (I’m greedy!), so I’m going to give you a brief run down:

Nystagmus - involuntary eye movement. My eyes often wobble without my control, I don’t normally even notice. It produces some very interesting photographs though!

Photophobia- excessive sensitivity to light. (NOT the fear of light) I am dazzled by light; car headlights, reflections, street lights and the sun all make it more difficult to see. I have done A level acting so am used to working under bright lights when I can’t see a thing. Having Gus has really helped me to be able to get out and about in the sun or when it is dark. The annoying thing about photophobia is that it’s a no win situation, can’t see in the sun and can’t see at night because of all the lights that are around! (Clubbing can be an interesting experience)

Squint- a squint is when they eye appears to be ‘stuck’ in one position. For me this meant that I was severely cross eyed as a child, I had surgery and eye patch therapy to correct this, but my eyes often turn inwards. This is linked to Nystagmus, because the muscles in my eyes are weak and under developed.

Corneal oedema- excess fluid in the cornea causing it to become cloudy. I have to confess that I actually don’t know very much about this one as I was only diagnosed with it in May of this year. It can be caused by glaucoma or previous cataract surgery. Right now it is relatively mild in my case and sometimes causes me to have blurry vision.

Glaucoma- excessive pressure with in the eye leading to optic nerve damage.

Cataracts- the clouding of the lens.

So what can I actually see? There is no simple answer to that question. The vision in my right eye is not very good most of the time I can just see fuzz. With my right eye I can read the top letter of the eye chart from 2 feet away. Fortunately my left eye is a lot better than that. In perfect lighting conditions I can get quite a long way down the eye chart. My vision varies immensely, for example I can hardly see anything at all outside when it is sunny or dark.

I have issues with perception of distance because I have one eye doing most of the work. So I often misjudge gaps, bumping into door frames is a regular activity. Having rubbish perception of distances means that I am very uncoordinated and clumsy.

I also find it difficult to recognise people, don’t take it personally when you next speak to me and I have no idea who you are. Life would be a lot easier if everyone who spoke to me did so by starting off saying their name and how I know them.


The bone stuff

I have a slight mobility impairment because I have odd joints! I have hypermobility syndrome meaning that a lot of my joints have a larger range of movement than they should have. The main downside of this is that I have some very weak joints and sprain things quite easily, although I have some amazing party tricks with the odd things some of my joints can do! I also have some misalignment issues with the lower half of my body; I have twisted hips, a twisted pelvis and twisted tibias (tibial torsion). That’s a bit of a mouthful but all it really means is that my knees ankles and hips are not lined up properly so I have a few issues with them. The main problem that causes is going down stairs, I’m fine going up but I find going down stairs quite tricky and I lack balance.


About my life

My independence is incredibly important to me. At this stage in my life there are still things I find difficult and there are times when I have to ask other people to help me to do something, but I try to be as independent as possible. Reading is possibly the area where I need the most assistance from other people, its not that I can’t read, it’s that I can’t read ‘standard’ size print. The font size I use most of the time is 18 with a really bold typeface.

I think that having a disability gives me potentially better problems solving skills than a person without visual impairment. I am always coming up with adaptive ways for me to be able to do something. Usually the best solution is also the simplest, whilst on my duke of Edinburgh expedition I put pieces of blue tack on the compass to allow me to do bearings – simple but effective.

My independence whilst out and about has improved greatly since I got my guide dog Gus. Gus is my first guide dog and goes everywhere with me, he is great as he often guides me around obstacles that I don’t even notice. Gus also really enjoys finding things like crossing buttons, doors and bus stops; I can now also go out knowing that I am not going to bump into anything!

As previously mentioned I am a full time student and I am about to go to university to study for a degree in journalism. When I’m not studying I can usually be found out and about somewhere, I play a Paralympic sport called goalball as well as blind cricket. I’m a really sporty person and I enjoy going to the gym and playing most sports, I like playing and sometimes watching football, badminton, tennis and cricket. I will be the first to admit that I am rubbish at most sport due to a complete lack of coordination but I still enjoy taking part.

I am also a (apprentice) Guide leader currently working with girls and young woman ageing from ten to fifteen years old. Guiding is something that I really enjoy I have helped to run various camping events and also taken a team of girls to complete in a county football event. Being a guide leader gives me the opportunity to be a big kid taking part in carnivals and all kinds of activities. Through guiding I have done kayaking, archery, rifle shooting, rock climbing, abseiling, skiing, sailing… the list is endless. When I am not out having fun with the Guides I also work as an adviser on visual impairment at national level, I have helped to write a book on including people with disability’s in guiding activities. As well as delivering disability awareness training.

When I am not doing all of the above I also manage my websites and blog for the BBC’s disability website Ouch! Writing is something that I really enjoy and I hope to do a lot more of in the future, I am also hoping to harass the lovely people at Ouch! for some work experience!

As you may have gathered I am a very active person and I do not like to let my disability get in the way of what I want to do in life, I probably want the same things out of life as any other person regardless of disability. I think it is important to challenge people’s perceptions of disability and that many of the barriers people with disabilities face can be overcome, quite often it is other people’s attitudes that provide the biggest barrier for a person with a disability.

Well hello there

Wow hi all i have to say i'm being rather tech-savvy here i'm writing this laying in bed on my mobile phone!
(the joys of predictive text)
so that nuget of vital information aside whats been happening i here you yell. Well in all honesty not alot! ,
currently i have massive amounts of work to do all of witch is rather dull.

right now i'm thinking i need to buy a wireless keyboard for my phone as typing this out ou a standard numerical keypad is making my hand hurt! Also right now i'm a little pissed off i'm currently in one of those moods were i just don't feel like sleeping its late and i should be asleep but i don't want to. Migu try some EFT, more about that later but for now i shall say good night and sweet dreams.

Recently

I have been rather busy, on Friday I went to beaulieu (yes I had to look up the spelling of that) it was great fun, we went on the monorail and on the old bus. we also went into the house and the Abby. The whole place was strangely un-accessible tho it did make me wonder how they got away with it, there appeared to be rather limited wheelchair access. only a few of there steps where marked...which was hazardous, there where lots of overhanging bushes and my most embarrassing "they could have done better on the access front" moment was there doors, when you pay for your entrance in to beaulieu you walk through a set of clear glass doors, I did not realise they where there! Anyway moan over it was really fun we had ice cream looked round gardens, got stuff blown every were in the cafe, went on a slightly scary monorail and looked at nice cars. we also went on the wheel thing where you look at the history of cars was really cool.

Then on Friday evening I went back to my friends and we played swing ball and a bit of catch and then had a very lush Chinese, it was a really lovely day!

Then on Saturday I went to a family anniversary party all my dads side of the family where there and it was my half-cousin's 5th wedding anniversary and it was really fun, I spent a lot of time holding some very sweet baby's, and giving them back when it was toilet time, did do quite a lot of nose wiping tho!

To be honest I'm writing this trying to hang on to those good things, I've been pretty down and alone, even wen I'm with other people

I'm finding the holidays harder than I thought, I never for a million years thought I would say these words but I'm missing college. At college there are places to go, things to be done, people to talk to and most importantly it's a reason to get up in the morning, to make myself get up.

Anyway I'm doing better than I was on the last anti-depressants I think these ones might actually be helping....so we will see how it goes...only time will tell.

To end on a positive note, I'm going away on Tuesday!!! its only to slough which is most peoples idea of the most hellish holiday destination ever but I'm going to see my auntie and her partner and her dog so its good :D