The next few days went by in a blur, the end of the summer holidays came and I had to go back to work, I tried my best to act 'normal'. The thing I think most people who know me find hard is that I don't look any different than before, perhaps my eye doesn't open as wide as my other one, but considering what my eye has been through it still looks healthy.
The first day was a training day which I coped with by attaching myself to someone, at the tea break and dinner I stayed at the table not daring to move as I was in unfamiliar surroundings, I had caught the train into work and walked to the school, the school has two sites, one I have known for about 11 years, the other one, where our training was held, I hadn't been in often enough for my brain to remember where everything was. I went home exhausted, and if I am honest a little emotional, this year I was to work with a male teacher who I didn't know and another TA who is lovely but again, and no disrespect to her, but I have to trust the people I am working closest with. This put me in a huge dilemma, do I give up, am I a risk to the children, I couldn't sleep that night all these things were going round and round in my head. The following morning I went back into work with the intention of grabbing my boss and letting her know what was going on, but with one thing and another I kept missing her, so I went to the classroom and started to help prepare the class for when the children came back. The teacher asked me to collect some things from the resources garage, I was crafty and got someone else to fetch me the key as I knew I wouldn't be able to see which number the key was hanging from, all was good, until I stood in the garage with all this stuff and realised that I couldn't see a thing, a Panic attack is something produced from the devil himself, its a bitch of a thing, and there's bugger all I can do to stop it until my brain starts to remember the warning signs. first its like a massive black mist surrounding me, I cant breath, I start to shake, I feel sick and dizzy and my brain goes 'empty' I have a overwhelming need to run away, get far far away, and then I cry and oh boy, not silent tears, great big fat sobs and I cant stop them, this is bad for my eyes as crying messes up my contact lenses and I cant see, which then sends me off into another panic. I fell out of the garage, somehow locked the door, fetched my coat, gave the key into the office and told them I was going home, how the hell I got home that day with out killing myself I will never know, I tried to pull myself together all the way to the train station, people were looking at me, I knew I looked a state and I thought I was calming down a bit, I got to the platform, then it came back, worse than before, I totally lost control this time, everything went, tears, snot, shakes and bowels, a fast train shot past on the other platform and in those few seconds I wanted to put myself under it, my train pulled in a moment later, do I get on it, how am I going to get home, I cant sit down, I have messed myself...WOMAN ,you have to get home! luckily I was far enough up the platform for me to get on the last carriage, there was two people sitting in a carriage, I stayed, with my head down, by the train doors, my stop is 5 minutes down the line, as I stood there another wave of emotion swept over me, humiliation, ashamed that I had no control over myself, at the time I was annoyed with myself for letting it happen, not realising that this is a process I had to go through for me to get where I am now. I got off at my stop and walked the short distance to my house, let myself in, went straight to the bathroom and cleaned myself up, I put my clothes in the washing machine, tidied up the breakfast things, looked at the post, then I went and sat in my conservatory, picked up the phone and called my partner at work, I explained all and started to cry again, he couldn't leave work so I called Mum, I howled down the phone to her, proper big sobs, she instructed me to get an appointment at the doctors, I rang then, nope, no appointments till next week, I phone Mum back, relay information...the next minute my sister comes flying around the corner into the car park out side my house, and she takes me to the doctors where the receptionist has miraculously found an appointment. From there things really started to move, he wouldn't give me anti depressants because he said I had to work my way through it, this was very early days and what I was feeling was a kind of grief, so I had to go through the motions and not mask it....other than that he knows I am a tough cookie.....your joking right? I just nearly put myself under a train!...yeah, but you didn't and that's what makes you a tough cookie...However, there are people I should get in touch with and they will help me, Bedfordshire sight concern, Action for Blind, Access to work, my Doctor, who I know well, scribbles some phone numbers down, tells me that I am a strong, brave and determined lady, and oh yes, I have the letter from the hospital, and I am signing you off from work until you have learnt to adjust to the new way you will have to live your life, this does not mean sitting a home doing nothing, it means calling these numbers making appointments and getting the help and support that is available. right o, I best get on with that then......
Monday, 31 August 2015
Tests
So, I return to the hospital on the Tuesday morning for tests, the first one involved having a cannula put into my hand and a dye injected through it, then I was hooked up to a machine that takes lots of photographs of my eyes, again all the staff were so lovely, they talked me through the procedure so I knew what was coming, bear in mind, I have already had my eyes dilated and cannot see a thing, so putting my trust into a group of people I don't know made me feel very uncomfortable. I remembered someone telling me that the die might make me feel sick, holy crap! they weren't wrong, once the dye was in my system I had to stick my head into this machine, all the while my brain is arguing with my stomach, you know that feeling, cold sweats, mouth watering, I felt dizzy, the nurse touched my arm, telling me to take deep breaths when all I wanted to do was throw up all over the expensive machine, when the machine had finished, the nurse took me back to sit with Mum to rest and let me stomach settle, as ever Mum was straight in with "Lynda, can you see those red chairs over there?","....No Mum", "WELL, I've been sitting here watching and there's this line of about 10 red chairs over on the other side of the waiting room!","......Yes, and.....", "well. no one sits on them!!!" I felt the dull sick feeling in my stomach lift and I begin to smile, I know I am going to start giggling over a line of bloody red chairs, we must have sat there like a pair of 6 year olds, with Mum saying "ohhhh, here comes someone!...no,no, they're not sitting on the red chairs". Then I was whisked away again to have lights shone in and out of my eyes, special lenses put into my eyes and more different coloured lights shone in and out...all the while all I could think about was who was sitting on the red chairs! Actually, thinking back now, Mum and I did a lot of distracting each other from what was happening, and at no point did I really think it was serious or that there would ever be a very strong possibility that I would loose my sight, after all, I was 38 years old, all the other people in the waiting room seemed to come and go, but we didn't, THEN I met Dr Andrews!
I was in a very small room with a young sounding Dr and My nurse Tina, when you cant see it is so hard to with hold information, they were talking to me, but it just wasn't sinking in, they were saying they thought I had MCN but the retina had become so thin that there was a very real risk it could detach..what's going round in my head? RED CHAIRS, RED CHAIRS....you will need to come and attend Dr Andrews clinic...red chairs red chairs...he will be along in a minute...red chairs, red chairs...Then I hear this booming voice getting louder, nahh that voice is not coming in my small space...more red chairs.....oh shit, he IS in my space, the red chairs vanished...I have never met someone so so, I can only describe him as a big friendly giant, with a massive personality, a man who is top of his game and knows it, he shouts move and everyone moves. With a booming matter of fact manner he tells me that I will be attending his clinic, he will be sending a letter to my doctor, with a click of his fingers I can hear the other Dr frantically tapping on his computer, I need to start a course of injections (at this point I didn't understand that the injections were going in my eye) BUT as I am too young the hospital will not pay for them and they will be £2000 each and I will need about 6....HAHAHAHAHA bloody red chairs!! BUT Dr Andrews himself has taken a look at all my results today and I need to start the injections asap as I already have a large build up of blood and fluid behind the retina, so I will be sent a letter with a appointment and he will inject me! Great, where the hell am I going to find £12,000...in his next breath he says something about speaking to someone higher up and my case going to some kind of panel, he is sure the hospital will give the go ahead so don't worry...oh and he grabs my hand shakes it, ruffles my hair and is gone......why the hell can't I get the Red Chairs to come back, at some point Mum had been brought into the room and says don't worry if we have to pay, we have to pay. The trip home that day was a long solemn one. And little did I know my turn on the red chairs would come soon enough.....
I was in a very small room with a young sounding Dr and My nurse Tina, when you cant see it is so hard to with hold information, they were talking to me, but it just wasn't sinking in, they were saying they thought I had MCN but the retina had become so thin that there was a very real risk it could detach..what's going round in my head? RED CHAIRS, RED CHAIRS....you will need to come and attend Dr Andrews clinic...red chairs red chairs...he will be along in a minute...red chairs, red chairs...Then I hear this booming voice getting louder, nahh that voice is not coming in my small space...more red chairs.....oh shit, he IS in my space, the red chairs vanished...I have never met someone so so, I can only describe him as a big friendly giant, with a massive personality, a man who is top of his game and knows it, he shouts move and everyone moves. With a booming matter of fact manner he tells me that I will be attending his clinic, he will be sending a letter to my doctor, with a click of his fingers I can hear the other Dr frantically tapping on his computer, I need to start a course of injections (at this point I didn't understand that the injections were going in my eye) BUT as I am too young the hospital will not pay for them and they will be £2000 each and I will need about 6....HAHAHAHAHA bloody red chairs!! BUT Dr Andrews himself has taken a look at all my results today and I need to start the injections asap as I already have a large build up of blood and fluid behind the retina, so I will be sent a letter with a appointment and he will inject me! Great, where the hell am I going to find £12,000...in his next breath he says something about speaking to someone higher up and my case going to some kind of panel, he is sure the hospital will give the go ahead so don't worry...oh and he grabs my hand shakes it, ruffles my hair and is gone......why the hell can't I get the Red Chairs to come back, at some point Mum had been brought into the room and says don't worry if we have to pay, we have to pay. The trip home that day was a long solemn one. And little did I know my turn on the red chairs would come soon enough.....
Sunday, 30 August 2015
What can you see?
The following couple of days I felt tired and my brain was desperately trying to adjust to what my eyes were seeing....and that's a funny thing, people ask me what I can see? and its a difficult question to answer because the brain is a incredible thing and it fills in the gaps, my brain works incredibly quickly, it races ahead before my eyes, for instance, this morning I walked the dog the same route I always walk him, I walk the same route because it is where my brain is at its most relaxed, I know exactly where every step, bump in the path, tree root etc. is, so the brain triggers memories so I know what's coming IF, like yesterday, something changes, like there was a tractor in the field beside the path I was walking on, it sends my brain in to high alert, because it is something different and my brain knows it has to absorb information and store it away for next time, added to that then is how I react to change, I know its only a tractor because I can hear it, but I need to consider how I behave, I need to remain calm and concentrate on the path....but my brain wants to register the tractor, so I have to stop, I bend down and pretend to be reassuring the dog of the tractor, all the time I am taking deep breaths until I know the process has passed, only then can I carry on...if I am put under pressure and cannot give my brain time to register new things, this is when the delightful experience of panic attacks kick in, (more about these demining experiences later). If I am going some where completely new or somewhere I haven't been for a long time, this is a much harder process, again I have to back up and slow down, my brain is registering every crack in the pavement, my ears are constantly listening for clues to help me register what my brain thinks I am seeing and different smells are stored away in the grey matter too! When I get into bed at the end of a day doing something different, every single image is played back to me , its a lot like watching a film, I shut my eyes and every detail is played back, I cant make it go any quicker or slower or make it stop, I just have to lay there with my eyes shut and let the film play. What my eyes see are much the same as you only I don't see colours as clear, its like wearing sun glasses all the time, and every straight edge is curved, people see the edges of things as a clear definite line, I see a fuzz, I don't see faces, unless I am up close, and recognise most people by their voice and body shape. I also have large permanent floaters in my eyes that drive me round the bloody bend, nothing is ever in focus properly and causes me to have head aches and I get exhausted, that is when I am wearing contact lenses, when I am wearing my glasses I can read a text message on my phone when the phone is held up to my nose, I only use my glasses in the morning to get me from my bed to the bathroom, they are really rather useless to me, with out contacts or glasses I am blind, totally, I see white fuzz and maybe the occasional shadow if the light is right. My contacts are my life line, there is nothing that can be done to improve or save my sight, so I have spent the last two years or so cramming in as much as possible, taking my girls to as many different places as my purse will allow. I have learnt to be tough, I refuse to let it get me down or stop me, I have walked and climbed up and down Snowdon, completed a midnight star walk for Keech, I keep working, I do as much as I can, there was a point when I could have sat and given up, but its not in my nature, I said all along I wanted to see whales swimming in the sea and I want to walk Hadrian's wall, these are things I will do....well will try to do soon.
White Fuzz
So, after a lot of pushing and pulling me about, it was decided that I should go home and as it was August bank holiday, I would have to return Tuesday and go to RTU. The trip home was awful, I had to rely on Mum to steer me through London, I don't remember why but Old Street station was shut so we had to get a bus to Kings Cross from outside the hospital, I felt small and vulnerable, the bus was packed with tourists, everyone was pushing and bumping into me....close your eyes, think about being in London on a busy afternoon, your eyesight has gone, so your other senses kick in, the noise was unbearable, I became sensitive to every single sound, I could hear sirens in the distance, a helicopter over head, all the chatter of everyone on the bus, the click of a bicycle as it cycled along side the bus, someone chewing gum, a child opening a bag of crisps, someone else was sipping from a cup, then my sense of smell was heightened, perfume, food, petrol, body odour, the funny smell that buses have that I never noticed before....all this got a whole lot worse when we got into kings cross, Mum was so hell bent on getting me home safe that she forgot to tell me where kerbs and lamp posts were, I remember bouncing off a couple of these as she whizzed me along the platform, I don't know what we must have looked like, me tripping over everything with my eyes fully dilated and Mum, who is shorter than me, linking arms with me and pulling me through the crowds, my Mum actually 'bristles' when she is pissed off and she was positively prickly. I have never really shared how those moments made me feel, trapped in a fuzzy white world and having to put myself totally in someone else's care, when you say you 'trust' someone..do you really mean 'trust' if I am honest there are only two people who I totally trust in my world, who I know would get me home safely, who would talk me through and tell me where the dangers are before I get to them, who will tolerate my very down days and try to bring me back up, who will be patient when I am having to be slow, but also they are people who take a step back and encourage me to be independent, but are always watching and know exactly when to step in.
Myopic Choroidal Neovascularization
A Facebook mate of mine said they had to look up MCN as they didn't know what it was so....
The condition occurs in people who are highly (myopic) short sighted. when someone is highly short sighted, the retina at the back of the eye is stretched due to the increased size of the eye associated with short-sightedness. this stretching can make the retina thinner and prone to splitting, when this occurs, blood vessels from the choroid (the layer behind the retina) can grow into the retinal space. These new vessels (neovascularization) leak blood and fluid, which prevents the retina from working properly, and in my case, has lead to severe permanent sight loss.
I must add that, being knocked of my bike probably didn't cause this to occur, although they cant say for sure, but I think going to Moorfields was suggested because doctors can tell so much from looking in the back of your eyes when you've had a knock to the head, also I am short sighted in both eyes , so they tend to leave my 'good eye' alone because if I loose the sight in that one, well, I'll be buggered really :) .....having said that everything that can be in place is in place for when that happens, which scares the crap out of me sometimes, then I remind myself that there's people a whole lot worse off than me and at the end of the day it will just be learning to live my life a different way, its not going to kill me and I know I will adjust to it.
The condition occurs in people who are highly (myopic) short sighted. when someone is highly short sighted, the retina at the back of the eye is stretched due to the increased size of the eye associated with short-sightedness. this stretching can make the retina thinner and prone to splitting, when this occurs, blood vessels from the choroid (the layer behind the retina) can grow into the retinal space. These new vessels (neovascularization) leak blood and fluid, which prevents the retina from working properly, and in my case, has lead to severe permanent sight loss.
I must add that, being knocked of my bike probably didn't cause this to occur, although they cant say for sure, but I think going to Moorfields was suggested because doctors can tell so much from looking in the back of your eyes when you've had a knock to the head, also I am short sighted in both eyes , so they tend to leave my 'good eye' alone because if I loose the sight in that one, well, I'll be buggered really :) .....having said that everything that can be in place is in place for when that happens, which scares the crap out of me sometimes, then I remind myself that there's people a whole lot worse off than me and at the end of the day it will just be learning to live my life a different way, its not going to kill me and I know I will adjust to it.
Saturday, 29 August 2015
Moorfields Eye Hospital
My personal experience of Moorfields has never been anything other than spot on really! The hospital itself is very easy to get to from where I live, literally a train ride in to Finsbury Park, 5 stops down on the tube and follow the green line (assuming you can see it) from Old Street all the way to the hospital. I had taken my Mum with me, throughout all I have been through she has been the one who has sat beside me, held my hand, made me laugh and kept me going.
It is a very clean and friendly place. I had phoned them and had to describe my symptoms to a duty nurse, who told me to make my way in immediately. I don't really know what I expected, but I found the wait is probably the same as in any other A&E around the country, but here they move you about, so, you check in, sit and wait 15mins or so, then you see the duty nurse, who actually writes stuff down and listens to what you are saying, I know this because he asked me questions relevant to the information I was giving him, its drives me mad when they ask you stupid questions!
I think the staff must be trained to remain calm at all times, as this definitely has a calming influence on the public, the duty nurse talked me through their procedure, and was very reassuring, then off he toddled with my paperwork and I return to the waiting area. This time my bum cheeks hardly meet the chair (which indecently are comfortable, that's chairs not my bum), and we are moved to the next waiting area, I am whizzed off for a sight test and am given my own nurse! Tina, who will be looking after you today. Tina is a large African lady who is the most nicest, loving and happy lady I have ever met in a hospital, she chatted freely to me while she took my blood pressure and did a eye test. Everyone who does my eye tests says exactly the same thing, Ohhhhhh you are very young to have such bad eye sight, I am never quite sure what to reply and half the time just say, Sorry! I have no idea why I say sorry! Tina made sympathetic noises and then backed out of the room to find a doctor...when she returned, I can tell you I had a massive lump in my stomach, I felt sick and I was sweating in parts of my body I didn't realise you could sweat from, Tina returns and says we are going to dilate your eyes and start doing some tests, and then tells me to return to the waiting area, only I cant see, I didn't know what to do, I stood there in this little room thinking, what am I going to do, how am I going to get to the waiting area, I wanted to cry, I could hear Tina singing away to herself and getting on with her jobs, and it felt like I had stood there for ever, then she said, are you alright Darling? you can go back to the waiting area now...in a very small voice I told her I couldn't see where to go, I felt horrible, emotions I have never experienced before all swamped over me in those few seconds, humiliation, uselessness, I felt ashamed that I needed help, she instantly made the situation light, took my arm and sang me all the way back to where my Mum was sitting. My Mum is hilarious, as we sat there waiting for dilation to work, she starts people watching, ohhhh, look at that ladies top, that's lovely! well, he obviously didn't look in the mirror before he came out this morning!....MUM I cant see them! OHHHH YEAHHH, WELL.....and proceeds to explain what everyone is doing and wearing, that is how quickly the people closest to me adjusted to my sight loss, Mum and I had some fantastic laughs in those waiting areas, and every time I was called in for a test or to see the doctor I knew she would be sitting there when I come out ready to make me laugh.
It is a very clean and friendly place. I had phoned them and had to describe my symptoms to a duty nurse, who told me to make my way in immediately. I don't really know what I expected, but I found the wait is probably the same as in any other A&E around the country, but here they move you about, so, you check in, sit and wait 15mins or so, then you see the duty nurse, who actually writes stuff down and listens to what you are saying, I know this because he asked me questions relevant to the information I was giving him, its drives me mad when they ask you stupid questions!
I think the staff must be trained to remain calm at all times, as this definitely has a calming influence on the public, the duty nurse talked me through their procedure, and was very reassuring, then off he toddled with my paperwork and I return to the waiting area. This time my bum cheeks hardly meet the chair (which indecently are comfortable, that's chairs not my bum), and we are moved to the next waiting area, I am whizzed off for a sight test and am given my own nurse! Tina, who will be looking after you today. Tina is a large African lady who is the most nicest, loving and happy lady I have ever met in a hospital, she chatted freely to me while she took my blood pressure and did a eye test. Everyone who does my eye tests says exactly the same thing, Ohhhhhh you are very young to have such bad eye sight, I am never quite sure what to reply and half the time just say, Sorry! I have no idea why I say sorry! Tina made sympathetic noises and then backed out of the room to find a doctor...when she returned, I can tell you I had a massive lump in my stomach, I felt sick and I was sweating in parts of my body I didn't realise you could sweat from, Tina returns and says we are going to dilate your eyes and start doing some tests, and then tells me to return to the waiting area, only I cant see, I didn't know what to do, I stood there in this little room thinking, what am I going to do, how am I going to get to the waiting area, I wanted to cry, I could hear Tina singing away to herself and getting on with her jobs, and it felt like I had stood there for ever, then she said, are you alright Darling? you can go back to the waiting area now...in a very small voice I told her I couldn't see where to go, I felt horrible, emotions I have never experienced before all swamped over me in those few seconds, humiliation, uselessness, I felt ashamed that I needed help, she instantly made the situation light, took my arm and sang me all the way back to where my Mum was sitting. My Mum is hilarious, as we sat there waiting for dilation to work, she starts people watching, ohhhh, look at that ladies top, that's lovely! well, he obviously didn't look in the mirror before he came out this morning!....MUM I cant see them! OHHHH YEAHHH, WELL.....and proceeds to explain what everyone is doing and wearing, that is how quickly the people closest to me adjusted to my sight loss, Mum and I had some fantastic laughs in those waiting areas, and every time I was called in for a test or to see the doctor I knew she would be sitting there when I come out ready to make me laugh.
Thursday, 20 August 2015
Pre Registration
I had always been short sighted and to this day its un determined what exactly caused my transition from short sighted to blind! I am healthy and used to enjoy cycling 6ish miles to work every day, I was very active and confident, all that changed on the 29th August 2010. I woke up early as my then partner had finished his night shift at 6am, but I felt odd! I don't know why but I didn't put my contact lenses in, which is something I always do before I get out of bed as my glasses are like some thing that Olive from 'on the buses' would wear! Walking down the stairs I felt light headed, when I sat down it took a few moments for my head to stop spinning and when I tried to focus everything was bent.....you know those wobbly mirrors traditionally found in fun fairs, it took me a few hours if I am honest to realise that something was very wrong and I probably should be making my way to the hospital.
The October before I had been knocked off my bike by some crazy woman who threw open her car door right in my path and sent me sprawling across the road in front of a bus, luckily I only damaged my shoulder but even though I was wearing one of those awful looking cycle helmets I smacked my head on the road, knocking myself out...the driver of the car indecently didn't stop because she had a doctors appointment and consequently was untraceable, but my point is somewhere in the muddle of the days following the accident a nurse advised me to go to Moorfields A&E if I should experience any problems with my sight from the head bump. So 10 months later, I am sitting on my sofa scared to death and the nurses voice pops into my head, so I call A&E, and so began one of the most daunting, humbling, bloody terrifying experiences of my life.........
The October before I had been knocked off my bike by some crazy woman who threw open her car door right in my path and sent me sprawling across the road in front of a bus, luckily I only damaged my shoulder but even though I was wearing one of those awful looking cycle helmets I smacked my head on the road, knocking myself out...the driver of the car indecently didn't stop because she had a doctors appointment and consequently was untraceable, but my point is somewhere in the muddle of the days following the accident a nurse advised me to go to Moorfields A&E if I should experience any problems with my sight from the head bump. So 10 months later, I am sitting on my sofa scared to death and the nurses voice pops into my head, so I call A&E, and so began one of the most daunting, humbling, bloody terrifying experiences of my life.........
Saturday, 15 August 2015
About me
So, here's a bit about myself! I am, well was, a single parent with two delightful, supportive and helpful teenage girls, we have a puppy and although he is super cute, I am constantly tripping over the little bugger!
I work (although some days I don't know how the hell I have done a days work) at a special needs school, I work part time, and have been for 13 years, I know the place inside out so I manage quite well around the place, its when the bell goes for the start of day that the problems start!
Over the last 3 years I have experienced lows that I thought I could never understand, and thinking about it now, it scares me how close I came to deciding enough was enough....without even realising I had come to that decision, and then to walk away, go to bed and wake the following morning to be horrified at the thoughts and feelings I was having! This blog is to help me sort though some of those emotions, to share some of the experiences with you, blind or not life can be a real bitch, and my ethos has always been that there are people a lot worse off than me...........
I work (although some days I don't know how the hell I have done a days work) at a special needs school, I work part time, and have been for 13 years, I know the place inside out so I manage quite well around the place, its when the bell goes for the start of day that the problems start!
Over the last 3 years I have experienced lows that I thought I could never understand, and thinking about it now, it scares me how close I came to deciding enough was enough....without even realising I had come to that decision, and then to walk away, go to bed and wake the following morning to be horrified at the thoughts and feelings I was having! This blog is to help me sort though some of those emotions, to share some of the experiences with you, blind or not life can be a real bitch, and my ethos has always been that there are people a lot worse off than me...........
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