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.

I am going to fight!

Ok so I am waiting for a consultant to call me and tell me whether the professor thinks it is clinically worth while to treat my eye.

Of course its clinically worth while! I can still See colour and do finger counting, I still have something so lets try and keep it that way. 

Without treatment my right eye will defiantly get worse and eventually I will have nothing left- nada -no vision. Who knows how fast that will happen but its almost guaranteed I will lose all the vision in my right eye.

I am 20 I already have a few problems with my left eye, surly my right eye should be worth saving?

If they decide its not worth saving the vision in my right eye I am going to fight the decision, I possibly have a lot of fighting coming up as even if they decide its clinically worth while they have to apply to the PCT for funding to treat me because of my unique condition.

So I am waiting to hear and getting ready for a fight, it saddens me how much I have to fight sometimes but it simply has to be done.

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.

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.

Friends with benifits

Now this I can safely say this post is not as X rated as its title may suggest, if only I was that lucky!

Recently student support at uni have been working with me to try and sort out a big, but infrequent problem.

Trips and off site activities keep being sprung on me, I am told for example the day before that I am going on a trip at 9am the next morning. Going to new places is very difficult, because if I don't know where I am going I cannot direct Gus and it becomes very difficult to get anywhere, I become more reliant on friends to show me where things are it makes trips that should be incredibly valuable learning experience incredibly stressful. 

So what can be done, well I have tried talking to the faculty and my level one tutor who was less than helpful, the general consensus has been 'its going to happen in life, get over it'.  Which is to an extent true, but when I am working as a full time journalist somewhere nice, I will get funding for support or use my own meticulous planning skills to the maximum avoiding the issue.

So anyway I'm working out the details with uni but it looks like we are going to implement a buddy system, only it can't be called a buddy system, it has to be something like orientation assistant instead. 

Anyway what will this job be, essentially a friend that gets paid!

Now some might say it is a Little worrying that i have to pay someone to be my friend, but the way i see it is that if they are my friend anyway then they are getting paid to help me out like they do already, possibly a slightly odd dynamic but I think its a great idea.

See friends with benefits.

Climbing barriers repeatedly

This year at university has been great, but filled with issues and problems and barriers to my learning.

It is important to mention at this point that there have been some fabulous people, and some committed and brilliant lecturers who never fail to meet my access needs and think of me in every circumstance.

Then there are those people who don't help at all, who for  a time could not possibly produce a large print hand out for me... until of course they were reminded by me of a little something known as The DDA (Disability Discrimination Act). After that shocker people started getting me large print handouts, and copies of power point presentations as they happen so I actually know whats going on. (finally)

That was one major issue resolved for the most part, it took 8 weeks but hey-ho sorted now.

There have however been countless issues.... one after the other in a near constant stream. Every issue is another barrier for me to battle to clime over, wonky legs and all!

Climbing over these barriers and battling to insure that people understand, is quite frankly wearing me down. 

Most of the issues I am facing could be avoided, a little extra planning could go a long way or a little organisation!

The most recent thing that has happened is the start of semester 2, it starts on Monday and I am expecting another bumpy ride at least in the beginning. The time table has completely changed, I have new staff teaching me and new rooms to find. All of this is going to throw up issues,  I am expecting that there will be glitches and I am fine with that.

To try and smooth out issues before they happen I have asked that all my new lecturers see something called a 'faculty form'. Basically the faculty form states what ALL of my disabilities and conditions are, it states what I need in lessons and spells out the basics. 

I would much rather people know that I am disabled before I walk through the door it allows them time to plan there lesson and avoids embarrassment.

Well I emailed the people concerned as a little don't forget to look at my faculty form, I have now received a email, that I was copied into from the faculty office with a word document that I produced at the begging of the year that concerns my visual impairment, I was at the time trying to simplify things purely relating to my VI.

Everyone always forgets my other conditions they may be marginally less significant than my Visual Impairment at this moment in time but that will not always be the case, I would rather people where prepared.

There was no mention of my bone condition (the wonky legs and hyper-mobile joints), the one that makes standing still in the same place for periods of time difficult, makes me wobble and makes stairs tricky.

There was no mention of my mental health, I may be in recovery right now but I am still receiving treatment on my way to being fully well again without medication.

I have come to the conclusion they either don't understand what my faculty form is, or that its filed away somewhere and they can't find it.

I don't get it  the faculty form is the most basic and simple of things all I want is for all my lecturers to see it, surly it s not that difficult.

It may be wearing me down but I will just have to keep climbing over the barriers.

Can I also say a big thanks to all the people out there who have ever tried to remove an access barrier from any ones path, your actions make all the other barriers seem achievable and remind those of us who have to climb the barriers that there are people looking out for them.

Change will happen to ME

It seems strange to be writing about change as I have just changed the layout of this blog, it seems to be creating a little sub theme, but the change I am referring to here is a life change.

It's at this point I need to mention Beth and her blog 'Screw Bronze'; I have been following Beth's blog ever since the start of the Ouch project and she is a truly fantastic example of a human being, if you do nothing else today just pop over to her blog and have a read. Her latest post titled 'Badminton, illness and change' has really hit me and helped me with a change I am getting to grips with right now.

As I am sure readers will be aware I have a bone condition in addition to being VI its that (not so) little thing that everyone ALWAYS forgets about, but trust me I never forget about it!

My condition has always been one that is likely to flare up and deteriorate over time, I have always known this but today I have come to a bit of a milestone.

After walking down The (EFFING) Eiffel Tower and then yesterday (just as things where improving) managing to slip over in the mud I am having a very serious flare up.

My left hip and knee take it in turns to be very painful and I am really struggling to balance.

I have hit the point I always knew would happen, it is time to obtain a walking stick.

This is for me a bit of a big thing, I am possibly being a bit pathetic but now the time has come I am finding it rather difficult.

People will see me and Gus and then a stick I'm worried about what will go through peoples heads, questions they might ask and the reactions of my friends, acquaintances and complete strangers.

Reading Beth's blog has made me realise, its just an adjustment to a new normal for me and everyone else, I have no need to feel self conscious or concerned about peoples perceptions and prejudices.

I am ME; a stunningly beautiful, 20 year old, independent. visually impaired woman who sometimes needs to use a stick to get about and more importantly I will not be ashamed of what I am.

OK its a change for me to think about using a stick, but it will only be a change for so long, and then it will become the norm, nothing will be different.

Difficulties

It's not been the easiest of weeks back and first off I should explain why I have not yet posted about the models of disability as I promised a few weeks back via the joy that is Facebook!

I had 2 big deadlines on Monday of this week so the majority of my time has been spent on that, I have started the post on the models of disability, but as it is a complex topic with many areas of debate I wish to make sure what I do upload is balanced and honest yet informed so I shall not be rushing it!

So far this week has not been a particularly good one, on Saturday (as many people will already know) my toaster blew up, which is devastating, being the independent woman that I am I got my mum to buy me a new one and she is bringing it down on Thursday!

Then literally minutes later my computer mouse stopped working, its fine again now but it was very frustrating! (and rather random)

I also feel the need to portray that I am sitting here writing this at 1AM because there is a drip on my roof, dripping more than once a second and making a great deal of noise, I would really love to be asleep, but its constant and very irritating; aside from that there seems to be an incredibly large number of drunk people about which is not helping matters. I start work at 9AM this morning I don't think I will get much sleep.

I don't like writing to much about my course but I feel I have to, of late things have not been going to well, actually there have been a lot of glitches regarding my inclusion.

The university is very inclusive as an organisation, and does a very good job of promoting diversity and inclusion. It is now not only the place where I study but my employer, which I think says a lot about the place.

So far the inclusion on the course itself has not been great, I think unfortunately this is down to peoples attitudes, lack of consideration and the general disorganisation of the faculty I am in.

There have been countless problems, It took me pointing out to a lecturer that he was in breach of the DDA (disability discrimination act) meaning I was within my right to take legal action for him to produce a large print handout, I should not have to do that, it should not take 6 weeks of me repeatedly telling everyone and then me losing my temper to get is sorted out.

There have been numerous issues over course content, I have had to endure attempting to create a visual design scrapbook which is as inaccessible to a visually impaired person as its name suggests. 

I have sat in lessons for 2 hours doing nothing because I cannot use the video editing software that is used, it would have been a better use of time to sit at home doing work instead of sitting in a room with no alternative given and simply being told we would be working in groups so I would not need to edit.

I had a trip to court on Monday, which I was told about on Friday not giving me enough time to book note taking assistance, leaving me incredibly venerable, anxious and generally like a confidence sieve.

I, and my needs have been forgotten on countless occasions.

We are in the last week of semester 1 and have just come back from the christmas break but already I have had issues, and the member of staff I booked a meeting with was less than supportive, I seriously wanted to cry (and very nearly did).

I am not indestructible things do get to me, I do get warn down by the continuous flow of issues and right now If you cannot already tell by the tone of this latest blog entry I am not happy.

I am fed up of speaking out alone about these issues-others witness but do not act, I am fed up of the lack of understanding or even the lack of willingness to understand.

I have had enough!

Review of 2009 > Hopes for 2009

It's 2009  so I wanted to wish all readers a happy new year and wish you all a happy, healthy year filled with great stuff!

I also thought I should write some kind of reflection on 2008 and my hopes for 2009, so here it goes.

2008 started with a new relationship, which at the time was fantastic, however 6 months later it became very apparent that it was wrong for both of us to continue how we where, we where in hindsight simply too different; that was the end of that. At the time devastating but now it was the right thing to happen.

The first half of the year was pretty mundane, I was ticking over at college, with a unconditional offer I didn't NEED to be there, naturally motivation to continue diminished, leaving me running at tick over, putting in lots of effort was pointless.

Of course lets not forget that for the first half of the year I was in the deep, darkness of major depression trying to find an anti-depressant that worked for me and wondering if I would ever be the same person again. I went on some horrible meds in this time that made me ill or seemed to improve my condition for a few weeks and then caused me to drop back down with a big bump, I remained on the end of a very long waiting list for further treatment on the NHS, and felt rubbish!  

Eventually my fantastic (now former) GP got me on the right medication for me, everyone is different and it takes time to find these things, but things started to look up.

Then in May I got a phone call that has completely changed my life,  a call form Guide Dogs to say they thought they had a match for me, the match of course being Gus who you will all know the story of.

At the end of June, begging of July Gus and I trained and my life changed hugely for the better, he really is guide dog of the year material!

Not only did this mark the start of me and my boy it marked the end of college and time to start preparing for the move to university, big but positive changes where afoot.

September saw the start of university which is fantastic, breaking news day which was utterly terrifying but probably good, and meeting all the new people. Gus and I continue to have a fantastic time at univeristy, I think Gus sometimes wishes there where more dogs at university to play with but over all he loves it.

( HAPPY NEW YEAR TO ALL MY NEW UNI BUDDIES!! see you Monday.)

Sadly 2008 also saw the end of my guest blogging for Ouch! I hope to be able to do more stuff with the team in the future but for now I am incredibly thankful for the opportunities they gave me as a teenager with no idea what to do with there life they helped me to find my path and follow it!

So what about 2009? 

I have many hopes for the year, my first of which is to try and be less of a complete wuss, I need to have more confidence in my writing ability, not something that can be done over night by anymeans but a year should be a start.

I hope to be off my anti-depressants by the end of 2009, I am now in recovery but the medication I am on is rather a high dose and highly addictive, so this is more of a challenge than it may seem to some, I am determined to get there and hope that 2009 will see me in a true state of recovery!

I hope Gus has a healthier new year, that is accident free and good for him.

I all ready have a lot of things planned for the new year, lots of which you will probably hear about here first so I would also like to take a moment to thank you all for reading this crap!

Disability Discrimination-it's still happening

Today I went out for a lovely meal with one of my very best friends, we had a great time and it was very nice over in Gunwarf Quays this evening. There was a brass band playing Christmas hymns lights up everywhere and a generally nice Christmas atmosphere. However all of my Christmas spirit disappeared thanks to a security guard. 

I was in Boots in Gunwarf, when the security guard asked me to leave, repeatedly.   I had done absolutely nothing wrong, I was stood with my friend looking at toothbrushes, and Gus was sitting at my side good as gold.

The security Guard came over and pointed at Gus and said ‘not allowed in here’, his English was by all accounts terrible.   I explained that Gus is a Guide dog and that he is allowed in shops, the security guard, either did not understand or simply ignored me pointed again and said ‘not allowed in here’.

At this point I informed the guard that he was breaking the law and asked to speak to the manager. He said that the manager was not there and walked off.

This is the first time I have ever been asked to leave a shop, and it was because of one member of staff’s complete lack of disability awareness.

It really upset me, big time; I was shaking with a mixture of anger and sorrow at the time. I will be phoning the manager tomorrow morning to inform her of what has happened.

It really hit home also that I know some Guide Dog owners face this kind of discrimination every day, everyday they are stopped from going about there business by peoples complete lack of understanding.

Given all the press coverage that The Disability Discrimination Act (DDA) has got all over Brittan and the steps that companies have to take to make sure there services are accessible I am disgusted.

This example proves that disability discrimination is still a problem in the UK.

Asking me to leave with my guide dog is just the same as asking a wheelchair user to leave their wheelchair outside.

As a major chain Boots should know better, they should be training all their staff in all aspects of The DDA. Furthermore their staff should be able to communicate in and understand English, as I am sure this contributed to the issue I faced today.

Well there we have it a day ruined by the misunderstanding of one person.

I am a very passionate campaigner for disability rights and do all I possibly can to educate people on my own disability so that hopefully they can gain a better understanding of the barriers faced by people who are VI.

I thought we had moved on passed the stage where people are regularly removed from shops due to the presence of an assistance dog, apparently I am mistaken.

I GOT A JOB

Ok excuse me for being incredibly hyper about this but wow I have managed to get myself a job.

 

Not only that but it’s a job I am feeling incredibly positive about; you are indeed reading the words of a volunteering ambassador!

 

I start in January and I am just so pleased about it.

 

Lets look at my employment history, its not great I have had one paid job which was the summer after my GCSE exams secured by my dad working in an office.

 

For every job I have ever applied for which must have been hundreds until now I received a negative response.

 

I had until now never had an interview for a job or anything. So my first interview for a job and what happens I get the job.

 

I have written on here about discrimination and the potential ways in which employers can avoid the disability discrimination act (DDA) previously and I am very pleased to report that I think maybe times are changing, maybe the DDA is having an effect, or maybe I am being naive

Scrapbooking *THIS POST CONTAINS LANGUAGE THAT SOME PEOPLE MY FIND OFFENSIVE*

In the last few weeks I have discovered that there is indeed a new type of craft activity that I dislike, it is the art of the scrapbook.

I will say right now from the start that I have always been rubbish at anything vaguely artistic or crafty.

I’m a Guide leader that hates craft activities, which may well be a rarity.

My lack of talent in the craft department is not something that I’m really bothered about. Lets face it everyone is crap at something; some people are crap at lots of things. I’m crap at any activity requiring pens, pencils, wool, glue, glitter, fuzzy felt, paint or any other craft material.

As a child at school it used to bother me that my painting was not as good as anyone else’s, or that my roman chariot looked like a penguin- now I’m fine with my crapness I accept and love it as an individual feature of me.

My lack of crafty artisticness does occasionally cause me frustration. I can’t sow for example which is a relatively common skill that the vast majority of the population possesses. It is also a skill I find people assume I can do, I’m not entirely sure whether that is some deep routed stereotype that every woman in the land can sow, o the fat that I am a guide leader. Either way people are often shocked when it arises that I cannot sow. Even my totally blind mother can hand sow and does the majority of my sowing, so its not even that I can say its because of my disability I’m just crap at it!

So anyway I went off on a bit of a tangent there I am currently involved in a project that requires me to make a scrapbook.

Scrapbooking I have recently discovered is both an activity I do not particularly enjoy, one that I find very difficult and that realistically I am crap at. (After all making a scrapbook requires craft skills)

I can also conclude that scrapbooking is also a dangerous activity; I have indeed sustained a scrapbook injury.

Whilst cooking on Monday evening I burnt my thumb, it was quite a nasty one there was the sizzle and the smell of burning flesh, still there was no blood and after some time under the cold tap all was well until….

Later on in the evening whilst adding to my scrapbook I got UHU on my burn.

For those that don’t know UHU is a solvent-based glue that can stick anything. 

I used UHU because its good at sticking things together as its very sticky but when it dries I can peel off the large amounts of it that I get all over the place.

Unfortunately getting it on the area of burnt flesh and subsequently peeling it off was not good.

In short I peeled off the glue and a lot of skin came off with it. (That does not normally happen)

Lesson learned don’t attempt to do anything crafty if you already know you are crap at it.

Ouch! The Streets, and a bit about me

[Wow yet again it appears to be quite some time since I last blogged, I really am getting lazy so am as of now going to commit to keeping my blog up to date.]

 

Ouch!

I have no excuses now for not keeping the blog up to date, the Ouch! Guest blogging program has been put to an end with the redesign of there website, so I am no longer writing for Ouch! I still have a webcam that technically belongs to them so you may well see me on Ouch! again in the future. 

Talking of Ouch! they have recently re designed there website and I would encourage anyone involved in web design to go and take a look at what a fully accessible website CAN look like. 

Lots of websites these days claim to be accessible to people that are visually impaired by offering the option of changing the text size, however in most cases this completely messes with the page layout text becomes crowded and overlaps other areas of text and usually becomes unreadable, the Ouch! website with its new design is fabulous!

The Streets 

Ok a band I'm really loving at the moment would have to be The streets, for anyone that has not heard there audio album offering I would seriously recommend it there album, is titled 'Everything is borrowed’ It’s really worth a listen. One of the, I think lesser-known tracks on the album is this one the lyrics of which I have copied and pasted especially for you!

The strongest person I know - The Streets

One of the first things about you I did see

Is that you verse your views quietly

When nature verses truths I get violent feelings

But softly time will reply that's wise

 

A delicate gesture of why you see

The best route through this being right through here

But met with a cute blind snide of fear

Best to go along with their idea

 

But , you gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

After taking the worst route, blatantly

Bang on cue we manage losing way

But in a squirmy backed and screwed up way

They actually managed passing you the blame

 

With that mad man wrapped with rage

Even then your temper stays exactly the same

And in that manner is the manner you stay

Beautiful person that's happily unchanged

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

In the heat of speech

Your words improve

Right out of reach in my stirred up words

But every time they f**king blurt out drool

I’m noticing they're all learning from you

 

Cos even though they know they cursed you

They should’ve admitted that they were fools

The next time they're wanting to work things through

The very first person they turn to is you

 

Cos you gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

You gently take things slowly

You softly bowl them over

That’s the delicate way you’ve shown me

You’re the strongest person I know

 

On a personal level

Well how am I? Now there is an intriguing question! I have had a few problems of late with my existing bone condition; in short my knee is playing up quite substantially. Approximately 2 years ago now I had a seriously large amount of physiotherapy on the knee in question, the effects of which would appear to have completely worn off. So here I am again feeling old beyond my years and in pain. I have now seen a doctor who has unfortunately not done a lot about it other than give me a prescription for 5 lots of Tubigrip and painkillers.

 

My problem with this is that its not going to sort out the long term issue (I am aware that nothing will do this completely), painkillers can become addictive and don’t alleviate all the pain very often and Tubigrip is fine as a temporary thing but the way the doctor suggested I should start wearing it all the time. This is a problem because Tubigrip is very flexible and elastic, it does not stay where it is put and with the knee joint in particular it creases up in the bend of the knee and digs in causing more pain.

 

Technicalities aside it is still essentially the same thing my bone condition and joints deteriorating, I’m not going to try and be upbeat about it, I’m going to be honest and say it’s a real blow, particularly as I have just started playing blind cricket again.

 

Other than all that I am doing ok, at the moment struggling slightly with a complete lack of creativity but I will get through that.

 

It could be worse

I keep reminding myself of this little mantra

It could be worse

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.