Blinder

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

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

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

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

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

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

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

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

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

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

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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

Its A Tough Time For Me

As I sit and write this I struggle somewhat with how to start, in truth it has been an incredibly difficult few weeks for me on all kinds of levels.

For starters University is not going well, it’s not the fault of any individuals but in short I am not getting the disability support I need to be able to keep up with my able bodied peers.

Books are inaccessible, I can’t even find the books I need to look at in the library independently let alone read them.

I have library support time where support workers help me find the materials I need and the read the relevent content which I record as audio compleate with page numbers and all the referencing data one could ever need. From these audio recordings I can then make my own notes, copy down quotes word for word and complete my essays and other research just as well as any other student.

The current problem being that unfortunately The University’s disability support team are massively over stretched, understaffed and struggling to meet the demand.

I have in the last few weeks only been getting one or two hours a week of this reading support which has meant that I am seriously struggling to keep up with my workload in a big way. My lecturers are understandably concerned about my progress and my ability to cope alongside my peers and the whole situation is just leaving me incredibly stressed!

Aside from the academic problems I continue to have serious issues with where I am living, unfortunately for me I am in first year halls even though I am in my second year.

The freshers I live with are phenomenally selfish and have all year caused problems for Gus and myself. There have been weeks during this academic year where they have literally partied every night until around three maybe four in the morning. When they finally come home they are completely out of their minds on alcohol and who knows what else screaming their heads off. That’s not to mention the many times I have left my room to walk down the corridor only to trip over some shoes or another object that has just been left in the middle of the corridor or worst still discovered that they have broken a glass and not made any attempt to clean it up!

Recently things got to the point where they were finally given their final warning about the noise they make. Since this has happened things have improved slightly but I am still regularly kept awake at night.

Only being able to sleep for a few hours has a serious impact on my ability to function, I will be the first to admit that I need a lot of sleep to function normally and if I don’t get it I can struggle with even the most basic of tasks. A three-hour session on public relations is a serious test of my ability to stay focused after such a terrible nights sleep. I worry that the lecturers see me yawning my head off in sessions and think I am really bored or that I have been out partying all night when in fact I have been in halls tucked up in bed attempting to sleep through a heard of elephants running around the corridors slamming doors, playing loud music and screaming there heads off.

Last week things got particularly bad the freshers where having a loud evening and I had already called security earlier on in the evening who had ask the freashers to keep the noise down. It got to half past twelve and there were a group of them congregating outside my door already drunk making a right racket. I had had enough so poked my head out of my door in my PJ’s with no glasses on to explain that I had a nine o’clock lecture in the morning and that I needed to get some sleep. I then got what can only be described as verbal abuse back, very personally aimed around my disability. It’s nothing I have not heard a million and one times before, I reported the issue and it has been dealt with very seriously so I at least feel like I have closure on that particular matter.

Somewhat unsurprisingly considering all the stress I have been under I developed a virus that I have really been struggling with in the last week mainly I have just been rather nauseous but it has had one slightly more unusual twist. It caused me to break out in very bad hives, the skin on pretty most of my body turned bright red puffed out and developed little bumps that almost looked like insect bites. By far the worst part of this was the incredibly intense itching. It is incredibly hard to concentrate on Harbermas’ theory of the ‘public sphere’ when all your mind is really thinking about is how much you would like to rip off your skin in the hope that having no skin would help the itching – of course this is totally irrational! I can however draw a line under the whole affair as yesterday I saw a very nice doctor who gave me a very strong prescription for some antihistamine which has totally cured me and for this I am incredibly grateful.

As well as all of the above my life has run very far from smoothly, Gus and I had a serious incident that had the potential to end his career as a guide dog, luckily as of yesterday this is all sorted now and Gus will all being well continue to be my guide dog for a long time to come. Gus was also ill for a week with various infections, he had to have a week of very light work and was utterly miserable but is now once again fighting fit.

The relationship I was in has ended, we still intend to stay friends as we are already booked in to see Jon Bon Jovi at Wembley Arena in the summer and as we play on the same cricket team.

I am once again having pretty serious issue with my shoulder from September to January I was undergoing physio. I have now been booted out by the physio department for missing an appointment. It was totally out of my control as I had a really bad fall and could barley walk let alone trek for 30 minutes to get to the appointment, but rules are rules. Honestly in my opinion the physiotherapy was doing my shoulder absolutely no good whatsoever, I spent an age every morning and evening making sure I did my exercises to no avail. If anything my shoulder is currently worse than it ever was, nerves are being pinched which is as painful as it sounds.

So all in all I have had a very rough time of it all recently and in truth it has seriously got me down, there has literally been one problem after another and I am just hoping everything will turn out ok in the end. I am incredibly stressed which does not help matters one bit so I am trying to remain calm and not let the world around me bother me too much!

BBC News – GPs access to depression treatment ‘is too narrow’

BBC News – GPs access to depression treatment ‘is too narrow’.

This is not really a surprise or a shock to read in some areas there are 6 month waiting lists just for a 6 week course of counselling! As a result drugs such as anti-depressantws are often used to fill the stop gap in treatment, while a patient waits for some other form of therapy.

BBC NEWS | Health | ‘No shows’ cost the NHS millions

BBC NEWS | Health | ‘No shows’ cost the NHS millions.

I had to write about this purely because I have had a very bad experience or two.

For example I once received an eye appointment for the same day at two o’clock, three o’clock and four o’clock they all arrived in the post on the same day in three separate envelopes, I had to phone up to try and establish what the hell was going on.

Another time I got sent an appointment at 9 am on a Saturday morning and another one for the Tuesday only a few days later both in the same envelope, I phoned (again) to check this was correct and was told that yes it was right. I turned up on the Saturday and know one could quite work out why I was there, my consultant was not even in and the doctor actually apologised for the ‘error’ even though it was not her fault!

Then there is the local podiatry service who ring me up less than 30 minutes before my appointment to cancel it, when I am already sat on the bus on my way, they have done this twice now.

Oh and then there is the time said podiatry administrator rang me when I was in town to tell me about a change in my appointment, with bags of food shopping, heavy rucksack, guide dog, wearing my non-prescription sunglasses and balancing the phone on my shoulder. She babbled possible appoinment times at me I said I did not have my diary out or a pen so I did not know when I was free and could not write it down.  She said I had to pick one,I said any.

She read the time and day out again  and I said could you email me that please, she said no.

I asked if  she could send me a letter in large print, she said no.

I asked if I could have a letter in standard print, she said no.

I asked if she could phone me back in 30 minutes she said no.

I asked if she could phone me back straight away and leave me a voice mail with the info, she said no, (abruptly).

I pointed out once again that I could not write it down, due to the fact that in those moments stood there in the sun I was blind, she said I should write it down told me when it was one more time and hung up!

Unfortunately this is just a brief outline of the experiences I have had in Southampton when trying to sort out hospital/doctors appointments, I have spent over a year attempting to get my appointments from the eye unit sent to me in large print without success, it’s the EYE UNIT!

Don’t get me wrong I think the NHS is great heck I get enough out of it, but my point is that it is no wonder people miss appoinmtnents with administration systems like the ones near me!

Blindness Is The New Cancer

As you may know I have an eye condition that effects my Macular in a similar way to Age related Macular Degeneration (AMD), but alas I am not seventy! In March I had a Sub-Macular Haemorrhage caused by sever Myopia (short-sightedness) and a combination of all the other eye conditions I posses (currently about 8).

A few weeks later at a routine appointment (that was nothing to do with my eye conditions) my GP decided to give me an eye test and inform me of a new brand of vitamin that was good for the eyes. Further research showed that it might help but at £60 for a months supply for me (being a poor student) it was never an option, and to be honest I was not sold on the idea that a vitamin pill would even help my condition.

Then I saw this story telling me that a supplement could  ‘slows down blindness’.  Research suggests if you have AMD and consume a diet high in antioxidants or even better high doses of antioxidant supplements it will slow down the rate of deterioration.

That’s it sorted then eat a load of fruit and vegetables and you’ll be fine… NO!

Exactly a week previously the story was “Oily fish ‘can halt eye disease'” . It suggests that  eating Oily fish ‘like mackerel and salmon’ appears to slow down or even halt the progression of AMD.

So if you eat a diet of purely oily fish, with a side of antioxidant rich fruit and vegetables you should be all right… Maybe!

None of the above dietary suggestions will cure AMD and make it all go away they are only theories worked out by scientists who have run trails who’s sole aim is to prove their theory to make money.

To further complicate matters there are two types of AMD, Wet AMD and Dry AMD.

Currently there is no reliable treatment for Dry AMD, wet AMD does have treatment options that can slow down the disease but wont completely eradicate it.

My main point of this long rambling post is this – There are loads of ‘cures’ and preventative measures flying around in the media for cancer we are used to seeing them if we took  every precaution we would live in contaminate free clean rooms, naked and with sterile safe foods shipped in every day. It is not reality nor is it practical do possible everything possible to prevent cancer because we simply don’t (in most cases) know what causes it.

Blindness is the same in this respect there 1001 things we can apparently do to stop us going blind but in reality Ophthalmologists (eye doctors) have not yet identified all the eye conditions that effect the human race yet let alone start on what actually causes them. Thus preventing them and curing them is impossible, but the media will still go for the story of the next cure for blindness to sell its content for a profit.

BBC NEWS | Health | System ‘failing autistic adults’

BBC NEWS | Health | System ‘failing autistic adults’.

It’s sad but a very true story that many people are struggling to live with autistic spectrum disorders they don’t know they have.

I personally have a friend who has recently found out that 10 years ago she was wrongly diognosed with Bipolar disorder and placed on a cocktail of drugs to ‘normalise’ her moods. This combination of drugs taken for so long has damaged her body to the point where she had to stop taking them (fully supported by a mental health team and her family).

Since coming off the medication she has been diagnosed as having Asperges and it is very unlikely she ever had Bipolar disorder!

My Day On The Ward

It’s just over a week now since I spent a day on the short stay ward of the eye unit, it was a long day particularly as I was sat there for about 4 hours waiting for it to be my turn.

Then when it was my turn all went well,  I didn’t see the needle coming towards my eye scream cry and then run, I was calm.

The whole op itself was about as horrific as I expected, my eye was numbed with drops and then rinsed out and then numbed and then rinsed a good few times.

Then I discovered there where actually two needles to go in the eye, needle number one was to numb it all and was supposed to sting, I love how oxymoronic that is!

I braced myself for the terror of the numbing needle and it was a complete anti climax didn’t sting at all really.

Then I got told to look left so the big gun, needle complete with Avastin could be inserted.

It hurt a lot!

My surgeon had to apply a lot of pressure to get the needle to pierce through my sclera (the white bit of the eye) and when the needle did get through it hurt a lot and there was a very odd popping sensation, I suppose you would expect that really but it was gross!

I can now conclude that the numbing injection number one did not work!

Due to the amount of pressure the surgeon had to apply my eyeball was very bruised and a lot of the surface blood vessels leaked so I left hospital with the white of my eyeball blood red.

As the numbing drops wore off I gradually got more and more pain in my eye, it streamed with tears constantly (which was irritating).

I had real big problems going outside in the sun and wind and stuff so I ended up having to patch my eye to make it  more comfortable. I can now safely say that I have heard every pirate joke going!

It’s taken a week for it to fully settle down and there is still some discolouration but I look less like a freak now.

I have to go back to see my specialist to discuss how it went and if it needs to be done again 4 weeks after it was done, its been 10 days and so far I have not had an appointment come through  so I think I will be chasing up the appointments system yet again!