Someone once told me that if we all put our problems into a pile we would soon be pulling our own out and running for cover, this is the philosophy I try to maintain and I often feel ashamed after I have had a 'feel sorry for myself day' that I haven't tried harder to pull myself together.
That said, there are some really stupid things that make my life so much more difficult....like cling film or sellotape, I mean cling film is a tricky thing for most people especially blokes, but there's been a million times when I cant find the end or pour mayo onto a bowl of tuna only to find someone has put cling film over the bowl and the mayo looks like it is magically hovering above the tuna!
I also find I miss read labels, when I am in a busy supermarket I find I am unable to concentrate on what's around me AND do the shopping, as soon as I enter a shop my mind goes blank, but I also have a problem with lists! when I was going shopping with my Mum or My Sister, I would tell them what I wanted and they would remember, then I started shopping with my Daughters....who DONT remember, so I need to write a list, only I loose lists so I have learnt to write 3 or 4 lists and stash them in various places, purse, jeans pocket, coat pocket, behind the case of my phone AND one each for the Daughters, by the end of the shopping trip we are lucky if we have any lists left! THEN came the day I thought I would try shopping on my own!!! I caught the bus using my newly acquired bus pass into Hitchin, I had 5 shopping lists stashed around my person, I was sooooo proud of myself for getting the bus on my own, strutting, confident, head held high, like I was some super hero, I waltz into Waitrose and pulled out my first list.....only to find I had written it too bloody small, I couldn't read it, what a pratt, I thought I was so cool, I had remembered everything, except to write my own bloody shopping list big enough for me to be able to read it. So, what do I do, ask someone to read it for me?...HELL NO! I picked up basket, big smile on my face, marched to the chocolate isle, filled my basket with chocolate and sweets, did the till thing and caught the next bus home, when I got in I got the magnifier out, and what do you know? Toothpaste, cotton wool, washing up liquid....no sign of bloody chocolate or sweets at all :)
One time I brought bread, I stood looking at a long isle of bread, thinking right, ok we usually have the blue one, I pick up the blue one, you can imagine the up roar when the kids came home from school and I had made their marmite sandwiches with Omega 3 bread....fish and marmite.....you gotta love it or hate it!...they hated it!
Then there was the time I did a whole weeks worth of laundry with what I thought was detergent and it was fabric conditioner......then the time when I thought I could install my new dishwasher on my own, which resulted in me getting stuck in a tiny cupboard, water pipe in one hand which was pissing water all over me, bucket in the other, but I couldn't make them meet because the space was too small, all because I hadn't seen there was TWO little taps and I had turn the wrong one off, the daughters and I ended up laughing hysterically as I squelched around the kitchen trying to clean up the river on the floor.....enter furious boyfriend who demands to know why I don't do as I am told.......everyone knows I NEVER do as I am told...
Wednesday, 23 September 2015
Change
At my next appointment at the hospital it was decided that there would be no more injections, there was a lot less blood and fluid behind the retina and although my sight had deteriorated slightly again the actual eye was looking healthy after the trauma of my last visit. we talked for some time about trying to improve the sight in my left eye but eventually the Doctor decided to leave it alone, explaining that all treatments carry a element of risk, if something were to go wrong and I loose the sight I have in that eye, well, basically I would be in real trouble. He sits and reads through my notes, doing that scratching his chin thing that blokes do when they really need to tell you something but they are not quite sure how you are going to take it......'I think its time we moved you on a bit'.....Errrr okay.....' well, get you more support, you know, for the future'........mmmmm, spit it out fella.......The Doctor produces a form, scribbles some stuff on it, hands it to me and points me in the direction of the RNIB. In a little room near the entrance of the hospital I found two lovely, kind and chatty ladies who helped me through the transition from being someone who was receiving treatment to someone who the treatment could no longer help, so I was going under the label of being registered blind.
If I am honest, I don't really remember much about that day, funny how your brain blocks out the memories you don't want, a lot of the time I remember hearing voices, but not taking in what they were saying, I just wanted to go home and do all this stuff another day! The ladies were fab, they soldered on, pushing forms in front of me and saying 'sign on my finger my dear!' I numbly did as I was told, the pile of paperwork beside me was getting bigger and bigger, I was exhausted both mentally and physically, I had reached the point where I wanted to bury my head in the sand until it all went away, but it wasn't going away and I had to face it like a grown up. As we made our way home that day with my leaflets for various organisations and support groups, my list of people I must see and the people who I should see, its hard to explain the emotions I was feeling...walking out of the hospital I felt a huge sense of grief, the heavy feeling in your chest and the selfish feeling you get when you think no-one in the world will ever understand how devastated you feel, and why? Because I had been given a label? because there was nothing more that could be done? A feeling of loss because I wouldn't be part of the buzz that I got when I was at moorfields and the hope that everything will be ok? The fear of losing the closeness I had built up with my Mum over the frequent visits to the hospital? Or just stupid dumb boring old CHANGE?....one minute I was part of a massive familiar procedure, there was a bank of people, Doctors, nurses, professionals, other patients, cleaners, the lady who brought the tea around, this group of people were my security blanket and suddenly it was gone...come back if anything changes, I know its all still there when I need it, but I felt like I was on my own.
While we waited for the connecting train at Finsbury park, I re evaluated my situation, I am not dying, I have two beautiful children, My Mum will always be there how ever much I piss her off, I still have and can work. I looked around at all the other people moving around on the platform and realised I was in London...I have been coming to London all this time, and yet I haven't seen any of it...bugger that, its time things did change, for the better, I then made a mental note to live life to its fullest, pack as much in as I can, remain as independent as I can and make my decisions MY decisions........
If I am honest, I don't really remember much about that day, funny how your brain blocks out the memories you don't want, a lot of the time I remember hearing voices, but not taking in what they were saying, I just wanted to go home and do all this stuff another day! The ladies were fab, they soldered on, pushing forms in front of me and saying 'sign on my finger my dear!' I numbly did as I was told, the pile of paperwork beside me was getting bigger and bigger, I was exhausted both mentally and physically, I had reached the point where I wanted to bury my head in the sand until it all went away, but it wasn't going away and I had to face it like a grown up. As we made our way home that day with my leaflets for various organisations and support groups, my list of people I must see and the people who I should see, its hard to explain the emotions I was feeling...walking out of the hospital I felt a huge sense of grief, the heavy feeling in your chest and the selfish feeling you get when you think no-one in the world will ever understand how devastated you feel, and why? Because I had been given a label? because there was nothing more that could be done? A feeling of loss because I wouldn't be part of the buzz that I got when I was at moorfields and the hope that everything will be ok? The fear of losing the closeness I had built up with my Mum over the frequent visits to the hospital? Or just stupid dumb boring old CHANGE?....one minute I was part of a massive familiar procedure, there was a bank of people, Doctors, nurses, professionals, other patients, cleaners, the lady who brought the tea around, this group of people were my security blanket and suddenly it was gone...come back if anything changes, I know its all still there when I need it, but I felt like I was on my own.
While we waited for the connecting train at Finsbury park, I re evaluated my situation, I am not dying, I have two beautiful children, My Mum will always be there how ever much I piss her off, I still have and can work. I looked around at all the other people moving around on the platform and realised I was in London...I have been coming to London all this time, and yet I haven't seen any of it...bugger that, its time things did change, for the better, I then made a mental note to live life to its fullest, pack as much in as I can, remain as independent as I can and make my decisions MY decisions........
Sunday, 13 September 2015
The Last Injection
Every time I went for an injection, I got braver, and the bleeding behind the retina seemed to be less and less apparent each time. It was the same routine when I went for my fifth injection, blood pressure, eye sight test, dilation and anaesthetic, and then testing to check fluid and blood levels behind the retina....oh, did I mention about having pressure taken? after each injection, before they let you go home they check these pressures (I have no idea what that is about, as usually I am so relieved that the injection is over that they can do what they like to me, because surely there cant be anything worse!). Again the nurse took me into a little room, and describes what they are going to do, its a little hand held device they put right onto your eye that checks these pressures, if they are too high or too low you cant go home! I don't know what happens then as each time mine were spot on, I think maybe once the nurse made me wait five minutes, checked them again and pronounced me good to go. I often wondered if the nurses keep describing things when they are out of work, you know, they are bathing their baby and proceed to describe the whole procedure to the baby, a bit like when you have learnt to use sign language, you tend to use it for everyone, and find yourself looking like you have blown a kiss to a man in his lorry when he has stopped to let you cross the road, when all you are doing is signing 'thank you'!
To be honest, I think I was getting a little cocky with the injections and the whole testing routine, and the whole experience was making me more and more independent, I remember saying to Mum, ohhh I could probably come on my own now, and Mum just giving me her WTF look and saying errr no! and me thinking,,,,bloody hell, I am not six, I can do this on my own!...then, once again, I am taught a lesson in, just when you think you know what's going to happen, it changes!
I was laying on the bed, head secured, clamp holding my eye open, and I was completely relaxed and thinking about whether or not someone would remember to put the Lasagne on that I had made for tea, nurse puts in drops, yep check, Dr is leaning on my cheek, yep check, injection is going in, yep check.....I hear the Dr say 'shit' and feel his body jump with panic....errrr no, this is NOT in the routine, I hear running feet, the clamp and my head support are whisked off, doors start opening and closing, I am hearing lots of different voices, I cant see or feel anything, panic sets in, but my brain tries to override it, nah, cant be me, perhaps the Dr broke something, OR perhaps something has happened in the other treatment room........next thing Tina is there, she is standing stroking her thumb up and down my forehead, saying 'hello my darling, everything is ok, the doctor will be back in just a moment, then I start to cry, bugger, it IS me. Then all I can think is Mum is sitting outside and there is all these people running in and out of the room, she must be terrified, so I cry harder, Tina is telling me I must stop crying.
It felt like I was stuck on that bed for ages, when the Dr came back he had brought along some friends, they all came and stood around the bed, tutting and making sympathetic sounds....my brain was screaming, WHAT THE BLOODY HELL HAS HAPPENED...but all I did was sob and wait, all my confidence, braveness and even my cockiness had vanished, I felt very very small and at the mercy of someone who wouldn't tell me what was happening, doors open and closed again, the Dr whispered some instructions to Tina and she quickly began opening packets, the Dr took my hand and said 'I am so sorry, but you have had a haemorrhage, and I am afraid that your eye looks terrible, I don't think we will be able to risk any more injections'. Silence...I couldn't think of anything to say, what was I supposed to say? 'ohhh that's ok then '. For the very first time I felt sorry for myself, why me? what the eff have I done to deserve this? I sat on the edge of the bed, trying to pull myself together, sort yourself out woman, you are not dead, and theres lots of others waiting out there, oh shit there IS lots of others out there, I ask Tina to fetch my sunglasses from Mum, explaining that if I was sitting in the waiting area and someone had come out of the treatment room looking as awful as the Dr said I did, I would be running for the nearest tube station!....needless to say, she went and fetched my sunglasses. Mum was brought into the little area between the waiting area and the treatment room, and someone, a voice I didn't recognise explained what had happened, what was happing next and what the future held...no more injections. My Mum is a tough cookie, looked at my eye and said 'ohhhhh, that's not too bad Lynda, lets get you home and in to bed, perhaps it would be best if the girls don't see you until tomorrow' that said it all really. The nurse came back with a big bag of medicine and I went home.
As it happened, I was in bed asleep when my daughters came in from school, when they came to say goodnight, the bedroom light was switched off so they didn't really see me until the following morning, they were frightened of me, it must have looked so scary to them, my whole eye was red, I couldn't put my contact lenses in so I couldn't see it, it took weeks and weeks for the eye to return to the normal colour, but it did, and I am so thankful that it did, because I don't want to stand out, I don't want sympathy, I don't want to be treated any differently, and that is hard because I do have a disability but I do not and will not consider myself as being disabled, in my eyes being disabled has a full stop after it, and it is meant for a unfortunate soul who is unable to do certain things, having a disability means I just have to look at different ways of achieving what I want to do. I have worked with and understood someone who is truly disabled, and they do deserve respect, understanding, sympathy and empathy, I do not put myself in that category equally I do not put myself in the same category as someone who claims to be disabled and sits back and lets the state look after them, when actually they could probably do a lot more for themselves, and now I will get off my soap box and go take the dog for a walk :)
To be honest, I think I was getting a little cocky with the injections and the whole testing routine, and the whole experience was making me more and more independent, I remember saying to Mum, ohhh I could probably come on my own now, and Mum just giving me her WTF look and saying errr no! and me thinking,,,,bloody hell, I am not six, I can do this on my own!...then, once again, I am taught a lesson in, just when you think you know what's going to happen, it changes!
I was laying on the bed, head secured, clamp holding my eye open, and I was completely relaxed and thinking about whether or not someone would remember to put the Lasagne on that I had made for tea, nurse puts in drops, yep check, Dr is leaning on my cheek, yep check, injection is going in, yep check.....I hear the Dr say 'shit' and feel his body jump with panic....errrr no, this is NOT in the routine, I hear running feet, the clamp and my head support are whisked off, doors start opening and closing, I am hearing lots of different voices, I cant see or feel anything, panic sets in, but my brain tries to override it, nah, cant be me, perhaps the Dr broke something, OR perhaps something has happened in the other treatment room........next thing Tina is there, she is standing stroking her thumb up and down my forehead, saying 'hello my darling, everything is ok, the doctor will be back in just a moment, then I start to cry, bugger, it IS me. Then all I can think is Mum is sitting outside and there is all these people running in and out of the room, she must be terrified, so I cry harder, Tina is telling me I must stop crying.
It felt like I was stuck on that bed for ages, when the Dr came back he had brought along some friends, they all came and stood around the bed, tutting and making sympathetic sounds....my brain was screaming, WHAT THE BLOODY HELL HAS HAPPENED...but all I did was sob and wait, all my confidence, braveness and even my cockiness had vanished, I felt very very small and at the mercy of someone who wouldn't tell me what was happening, doors open and closed again, the Dr whispered some instructions to Tina and she quickly began opening packets, the Dr took my hand and said 'I am so sorry, but you have had a haemorrhage, and I am afraid that your eye looks terrible, I don't think we will be able to risk any more injections'. Silence...I couldn't think of anything to say, what was I supposed to say? 'ohhh that's ok then '. For the very first time I felt sorry for myself, why me? what the eff have I done to deserve this? I sat on the edge of the bed, trying to pull myself together, sort yourself out woman, you are not dead, and theres lots of others waiting out there, oh shit there IS lots of others out there, I ask Tina to fetch my sunglasses from Mum, explaining that if I was sitting in the waiting area and someone had come out of the treatment room looking as awful as the Dr said I did, I would be running for the nearest tube station!....needless to say, she went and fetched my sunglasses. Mum was brought into the little area between the waiting area and the treatment room, and someone, a voice I didn't recognise explained what had happened, what was happing next and what the future held...no more injections. My Mum is a tough cookie, looked at my eye and said 'ohhhhh, that's not too bad Lynda, lets get you home and in to bed, perhaps it would be best if the girls don't see you until tomorrow' that said it all really. The nurse came back with a big bag of medicine and I went home.
As it happened, I was in bed asleep when my daughters came in from school, when they came to say goodnight, the bedroom light was switched off so they didn't really see me until the following morning, they were frightened of me, it must have looked so scary to them, my whole eye was red, I couldn't put my contact lenses in so I couldn't see it, it took weeks and weeks for the eye to return to the normal colour, but it did, and I am so thankful that it did, because I don't want to stand out, I don't want sympathy, I don't want to be treated any differently, and that is hard because I do have a disability but I do not and will not consider myself as being disabled, in my eyes being disabled has a full stop after it, and it is meant for a unfortunate soul who is unable to do certain things, having a disability means I just have to look at different ways of achieving what I want to do. I have worked with and understood someone who is truly disabled, and they do deserve respect, understanding, sympathy and empathy, I do not put myself in that category equally I do not put myself in the same category as someone who claims to be disabled and sits back and lets the state look after them, when actually they could probably do a lot more for themselves, and now I will get off my soap box and go take the dog for a walk :)
Tuesday, 8 September 2015
SLOW DOWN!!!
From the first injection everything sort of steam rolled, I was going back to the hospital every six weeks, each time I had to have an assessment and tests to see how much fluid was leaking and if the Dr felt another injection was necessary. One time my appointment had fallen on the 15th of December, I always like to get the train before the train that I need..hope that makes sense? but on this occasion, we got on a packed train (cos everyone and their mum seemed to be off to do a spot of Christmas shopping) then the bloody thing broke down at Hitchin station, every time mum and I go to the hospital, whether it be for an appointment or one of my famous visits to A&E, we don't eat, Mum drinks coffee, but I cant stomach anything, in fact we got into a routine that neither of us ate or drank until we were on Finsbury Park station on the way home, then she would have coffee and I would have a ginger biscuit. Anyway, on this day, the lump in my stomach was particularly big, and I just felt like it was going to be a bad day. Just as I was thinking about ringing the hospital to tell them I was going to be late, we started to move, usually Mum and I chatter, but not today, everyone was getting on my nerves, a bloke in the seats in front of me on his mobile phone, although he didn't really need one as he was talking so loud I suspect he could be heard all over the country, a young girl sat across from us had her ipod on, but it was so loud through her earphones all I could hear was the buzz of the base! When we reached Finsbury Park, a torrent of people got off and swarmed onto the platform, during my training I had been taught that if I felt unsafe to find something solid, like a wall, and stand with my back to it and lean on it taking deep breathes until either someone could help me or I could figure out what I needed to do next. I felt so odd, I moved to the waiting room wall and stood as close to it as I could and let people move past me, our train came in, but I couldn't get on it so we waited the whole 6 minutes for the next one. I can only way I can describe the way I was feeling is, you know when you've been at work all week, and its been a manic one, you reach Friday and you think, balls, I'm off down the pub? you get in there and get the wine in, before you know it you've drank two bottles of wine and then realise all you've had to eat today is a packet of crisps, so you stand up and there's that terrible feeling that the room is spinning, your tummy keeps flipping, you start with the hot and cold sweat thing, and then the nausea sets in? Well, that's how I was feeling. we got to the hospital and the staff, that I was now becoming familiar with, knew something was wrong, they were extremely under staffed and said there could be quite a wait so they did my tests then sent me off to the café, I tried hard to eat and drink thinking this was the reason for me feeling so strange, as we wondered back I barked at Mum for bumping into me and commented that every bloody one was bumping into me, all she said was "Lynda, its not everyone else, its you" well, that was like a slap in the face, here I was barrelling along, there is nothing WRONG with me, I just have very poor sight, why the hell is my balance off. I explained how I was feeling to the Dr, who proceeded to make me follow him around the corridors, he moved sometimes quick and sometimes slow, we had a destination, but I don't remember it, all I remember was I kept bumping into things, tripping over chairs or seeing things too late, I was getting properly pissed off with myself. Turns out my eye sight had deteriorated again, only slightly but enough for my brain to be screaming, "WHAT THE HELL WOMAN, WILL YOU SLOW DOWN SO I CAN RESET MYSELF TO WHAT YOU ARE SEEING"....I cant tell you how many people tell me to slow down, it is not/has not been in my vocabulary, I have a real problem when there are a lot of people moving all at the same time, my brain cannot cope with the images it is trying to process, if I am tried or unwell, my body sort of says right that's enough and starts to shut down, I cant fight it and I know I need to listen to what my body is telling me, I know I need to slow down and I know I need not to put myself in situations that I cant cope with, but I am a awkward, stubborn old boot and I feel ashamed to say when I cant do something, even when I know I have to stop, I have become fantastic at pretending, every challenge I face makes me stronger, but I have learnt some very hard lessons and have been trying to slow down (Honestly, I have!!)
Monday, 7 September 2015
Avastin Injections
The following 25 minutes dragged while I waited for the Avastin, when I heard the Dr and nurses voices on their return I instinctively stood up and the nurse took my arm and lead the way, the treatment room was described to me as being similar to a mini operating theatre, everything was sterile, only two people were aloud in the room with the patient (that'll be the Dr and the nurse then!), The nurse helped me onto the bed and told me to relax...RELAX, clearly she hadn't been listening to all the horror stories the oldies had been preaching out in the waiting area. I felt some sort of a contraption holding my head in to a stable position and then I was talked through having a 'clamp' attached to my eye to hold it open while the injection was administered....more anaesthetic was put in to my eye, the clamp, I remember, was very cold, I held my hands together on my stomach and was pushing them so hard into my belly that I thought I was going to pass out. How many people stretch their feet out and point their toes when they are in the dentist chair? Well, that was me, knees locked, bum cheeks clenched, and frankly I was crapping myself! The clamp goes between your top and bottom eye lids and, well, holds them open so you cant blink, I was expecting, even though the nurse has said it wouldn't hurt, to feel a searing pain, or something truly horrendous. But all I felt was the Dr leaning on my cheek and just a feeling of pressure being put on my eyeball, which as I write I can feel it now if you know what I mean! I was lucky (or rather the Dr was lucky) that I couldn't see the needle coming! It was all over in seconds, the clamp was off, the nurse was putting antibiotics into my eye and the Dr had whisked off to write my notes up and make me a prescription for a further weeks worth of antibiotics. I wanted to cry with relief, it wasn't nearly as bad as I had been lead to think. Then I was packed off home, this time getting home was a much slower procedure, I was frightened that I might get knocked over, even with my stick and Mum at my side I suddenly felt very vulnerable.
I couldn't put my contact lenses in while I was having antibiotic drops in my eyes so I couldn't go out and I was limited to what I could do around the house, I had to have someone put in the drops for me because I wasn't able to do it myself, that was when the talking books were my saviour, I lost myself in many stories, 'The illustrated Man' by Ray Bradbury was my favourite. But anyway, that was the first of my six injections, as the weeks went on, the 'oldies' became friends and looked out for me and they started having conversations about their lives, families and histories instead of trying to frighten the crap out of me!
I couldn't put my contact lenses in while I was having antibiotic drops in my eyes so I couldn't go out and I was limited to what I could do around the house, I had to have someone put in the drops for me because I wasn't able to do it myself, that was when the talking books were my saviour, I lost myself in many stories, 'The illustrated Man' by Ray Bradbury was my favourite. But anyway, that was the first of my six injections, as the weeks went on, the 'oldies' became friends and looked out for me and they started having conversations about their lives, families and histories instead of trying to frighten the crap out of me!
Saturday, 5 September 2015
Retinal Therapy Unit
You know, someone has just told me I have made loads of spelling mistakes, for this I am very sorry, as nothing gets on my nerves more than bad spelling!...Also, I forgot to mention before something that was taught to me during my training, how to navigate myself around a keypad, so if I am paying for shopping that is over the limit that I can 'tap' for, I was taught that if you feel the number 5 on any keypad, even on a computer, anywhere that numbers need putting in, there will be a raised line or a small raised spot, if I know where 5 is I can manage to put my pin in easily. Cool eh? AND the bumps on pavements...the long oval ones tell me there is a bus stop there, and the round ones tell me I that this is a good place to cross the road. At traffic light crossings, if the lights don't beep, there is a little knob under the box which has the button on which you press to get the lights changed, when its good to cross the little knob swivels, which is also very cool!
Anyway, back to Moorfields I go, this time I am armed with my Mum, my stick, mine and Mums cheque books and credit cards. I am trying, as usual to act calm but I have a knot in my stomach as large as a beach ball. The 'out patents' care is just as professional and organised as A&E. RTU is underground, it is incredibly clean, there are no windows to gaze out of. This is all new to me so again, I am taking in every single thing, but because I don't know what happening my brain won't absorb everything , and I keep checking that Mum knows where we are. As before, we are moved from room to room, this makes you feel like something is happening, instead of just sitting looking at strangers, first you check in, good, I am on todays list!! next you go to a different area to have your eyesight checked, usual reaction from the nurse ...OMG how DOOOO you manage!.....Errrr just get on with it really :).........your are so young....well, I'm 38...that's nearly 40!!! Sight test complete, nurse puts in dilating fluid into both eyes and anaesthetic and antibiotic into my right eye. Just pop along the corridor and wait on the blue, yes I said blue chairs. Mum jumps up as I come out, and we walk around to 'THE CORRIDOR OF DOOM'. As I look down this long corridor there must have been 40 blue chairs, every single one of them occupied by a person, not one of those persons was under 70 years old, a gentleman gets up and offers Mum his chair, she promptly shoves me onto it...every single one of those OAP's turns and glares at me, luckily the dilation is starting to work, but I can hear the mumbling, then I hear a different noise, a rumbling, and foot steps, what's this...all the old peeps start fidgeting and getting out their purses, bloody hell, it a TEA trolley, there was a lot of commotion and fussing, for some reason this gives me the giggles, thinking back it was probably nerves, mixed with the dismay of being grouped with OAP's, not that there is anything wrong with OAPs, but in my ignorance just assumed there would be people my age waiting for treatment. As time ticked on we were all called one by one for blood pressure and dilation check, when my name was called, and I got up instead of Mum, it caused a ripple of chatter all the way down the line, I had to be escorted in and out by a nurse as by then all I could see was the white fuzz. Early afternoon and we were down to the last dozen seats, and there was a small group of us sitting there, an old man broke wind, his wife was horrified, but Mum and I are giggling away, this broke the ice and the others started to talk to me..."Are you here for an injection dear?"..yes..."How awful"..they then proceeded to share with me every single horror story they had known about the injections, they managed to paint such a gruesome picture that, I began to shake, something strange happened to my hands, the palms were sweating, I felt cold and my heart was sending my blood pressure through the roof. As long as I live I will never forget that feeling of fear when my name was called, Mum squeezing my hand as I got up and all the oldies singing "good luck", like I was off to play a bloody game of bingo, Dr Andrews was in his little office, looked at me, and told me if I didn't calm down he wouldn't be injecting me, and I didn't, so he didn't. He left me in the room and went and sorted the next patent, a nurse came in and did the whole distraction thing and I shared some of the horror stories...."once the needle snapped in my eye".... "they had to tie me to the bed".....you know when you need to run, get away. there was no way I was staying. The nurse was lovely she got me a glass of water and talked me through the procedure, When the doctor came back he started saying that I was unable to have the same drug as everyone else, I needed something called Avastin, which they aren't allowed to keep at the clinic, my heart and stomach lifted. ha, I am going home, no injection for me! The Dr, taps me on the knee and tells me to sit out in the waiting area, and he, and the nurse will nip up and get my drug administered and signed for, balls!!!
In all the fuss, I had forgotten that Mum had been sat out in the waiting area with the evil oldies telling her dreadful things, as soon as she sees me she grabs her handbag, I feel the judging eyes and the mocking, "what a baby, she didn't have it done", the Nurse explains what's happening, and Mum sits back down, 15 long, long minutes later, I am back in the little office, where I am told, the hospital will be paying for my injections and here comes the first one......
Anyway, back to Moorfields I go, this time I am armed with my Mum, my stick, mine and Mums cheque books and credit cards. I am trying, as usual to act calm but I have a knot in my stomach as large as a beach ball. The 'out patents' care is just as professional and organised as A&E. RTU is underground, it is incredibly clean, there are no windows to gaze out of. This is all new to me so again, I am taking in every single thing, but because I don't know what happening my brain won't absorb everything , and I keep checking that Mum knows where we are. As before, we are moved from room to room, this makes you feel like something is happening, instead of just sitting looking at strangers, first you check in, good, I am on todays list!! next you go to a different area to have your eyesight checked, usual reaction from the nurse ...OMG how DOOOO you manage!.....Errrr just get on with it really :).........your are so young....well, I'm 38...that's nearly 40!!! Sight test complete, nurse puts in dilating fluid into both eyes and anaesthetic and antibiotic into my right eye. Just pop along the corridor and wait on the blue, yes I said blue chairs. Mum jumps up as I come out, and we walk around to 'THE CORRIDOR OF DOOM'. As I look down this long corridor there must have been 40 blue chairs, every single one of them occupied by a person, not one of those persons was under 70 years old, a gentleman gets up and offers Mum his chair, she promptly shoves me onto it...every single one of those OAP's turns and glares at me, luckily the dilation is starting to work, but I can hear the mumbling, then I hear a different noise, a rumbling, and foot steps, what's this...all the old peeps start fidgeting and getting out their purses, bloody hell, it a TEA trolley, there was a lot of commotion and fussing, for some reason this gives me the giggles, thinking back it was probably nerves, mixed with the dismay of being grouped with OAP's, not that there is anything wrong with OAPs, but in my ignorance just assumed there would be people my age waiting for treatment. As time ticked on we were all called one by one for blood pressure and dilation check, when my name was called, and I got up instead of Mum, it caused a ripple of chatter all the way down the line, I had to be escorted in and out by a nurse as by then all I could see was the white fuzz. Early afternoon and we were down to the last dozen seats, and there was a small group of us sitting there, an old man broke wind, his wife was horrified, but Mum and I are giggling away, this broke the ice and the others started to talk to me..."Are you here for an injection dear?"..yes..."How awful"..they then proceeded to share with me every single horror story they had known about the injections, they managed to paint such a gruesome picture that, I began to shake, something strange happened to my hands, the palms were sweating, I felt cold and my heart was sending my blood pressure through the roof. As long as I live I will never forget that feeling of fear when my name was called, Mum squeezing my hand as I got up and all the oldies singing "good luck", like I was off to play a bloody game of bingo, Dr Andrews was in his little office, looked at me, and told me if I didn't calm down he wouldn't be injecting me, and I didn't, so he didn't. He left me in the room and went and sorted the next patent, a nurse came in and did the whole distraction thing and I shared some of the horror stories...."once the needle snapped in my eye".... "they had to tie me to the bed".....you know when you need to run, get away. there was no way I was staying. The nurse was lovely she got me a glass of water and talked me through the procedure, When the doctor came back he started saying that I was unable to have the same drug as everyone else, I needed something called Avastin, which they aren't allowed to keep at the clinic, my heart and stomach lifted. ha, I am going home, no injection for me! The Dr, taps me on the knee and tells me to sit out in the waiting area, and he, and the nurse will nip up and get my drug administered and signed for, balls!!!
In all the fuss, I had forgotten that Mum had been sat out in the waiting area with the evil oldies telling her dreadful things, as soon as she sees me she grabs her handbag, I feel the judging eyes and the mocking, "what a baby, she didn't have it done", the Nurse explains what's happening, and Mum sits back down, 15 long, long minutes later, I am back in the little office, where I am told, the hospital will be paying for my injections and here comes the first one......
Tuesday, 1 September 2015
Sight Concern
The following morning I did as I was told (which as anyone who really knows me will tell you, I never do as I am told) and rang the numbers the doctor had given me, this lead on to a lovely meeting with I guy called Rob, he went through a load of paperwork with me, sorted some visual aids for me to use around the house, and put together something called 'My Personal Rehabilitation Plan'. A couple of days later I receive my box of goodies, in this box there was a talking clock (to go beside my bed , so I just tap it and this delightful American voice tells me the time), a boil alert, so I know when a saucepan of water is boiling, a big button telephone, which I hate and has been returned to the box, contrasting chopping boards, which have saved my fingers a few times, a writing frame which looks ridiculous and I refuse to use it, toenail clippers, which, shhhh, I cant use because I cant see my toenails AND MY WHITE CANE, this piece of equipment has been my lifeline, it helps me support myself on the return journeys from the hospital (except when my Mother grabs hold of it to steer me across the road, or when she grabs me under the arm and the bloody thing fly's through the air), it gives me confidence to go out on my own, I always use it if I go somewhere new where there is the possibility that I might need to find somewhere on my own, it also lets people know that I have a visual impairment, most of the time people give me space and try not to bump into me, if not I simply hit them with it!! But before all that, I had to have my 'training'....so I had two gentlemen from the visual impairment team who helped me through my training, first I had to learn how to use my stick correctly, which is much harder than it sounds as I wanted to rush along with it, but apparently you have to 'slow down' which is not a phrase I understand! Throughout my Mobility lessons, I learnt how to safely cross the road, how to use the stick for getting me up and down steps, kerbs and stairs, getting on and off a bus, they took me to my familiar places and they taught me a safe route to take from the station to the school where I work, I then had lessons in, mowing the lawn, hovering and ironing, all of these techniques have been invaluable to me, and I use them everyday, it involves taking the task I am about to do, and divide it into much smaller chunks, it also means going over things twice just to make sure and visualising in my head the activity I am doing. Then over the next 6 months I had to start going to the shops, walking around and just finding my way around things. I felt awful, I hated what people must have thought of me, here I am signed off from work, and I am going shopping, again, this is something I had to do, my Doctor had said to me when I was moaning one time that he was signing me off again, that if I couldn't cope with every day things, and couldn't go out on my own, how was I going to go back to work, so he singed the form, slapped it in my hand and sent me home.
Sight concern were worried about the time I spend alone as I cant 'watch' the telly particularly on a bad day, so they completed a application for Calibre talking books which helped me through the early stages and gave me something to loose myself into, later they also sent me a Dab radio, which I love. I also received a bus pass and a railcard, My now ex partners Mum had kindly paid for all my train tickets up to London during the treatment, and the railcard then knocked off a 3rd of the price. Some of the things put in place didn't and still don't sit well with me, I had a stand up argument about applying for a blue badge with a lady from sight concern, she argues that if I came out of a supermarket for example and I am used to the light in there, and it was very sunny or dark when I came out I would be unable to navigate myself across the car park safely, I remember sitting with this stupid form in front of me and refusing to answer the questions properly, the woman kept sighing and I wanted to tell her where to shove the form...she took the form and posted it for me,,,,, bugger me if a few weeks later a bloody blue badge lands on my doormat, I hated looking at it, until one day I had to go to the QE2 for a certain test, there was no where to park so my ex parked on a side street, when we came out, my eyes had been dilated and I kept tripping over things, so he left me standing on the corner of the road on a grass verge while he got the car....I hear a car draw up, and I feel for the door handle and get in....you can guess the rest, I still wonder whose car I had got in, no words were exchanged as soon as my backside touched the seat I knew I was in the wrong car and leapt out, the person quickly drove off, and I stood there trying to act cool.
Sight concern were worried about the time I spend alone as I cant 'watch' the telly particularly on a bad day, so they completed a application for Calibre talking books which helped me through the early stages and gave me something to loose myself into, later they also sent me a Dab radio, which I love. I also received a bus pass and a railcard, My now ex partners Mum had kindly paid for all my train tickets up to London during the treatment, and the railcard then knocked off a 3rd of the price. Some of the things put in place didn't and still don't sit well with me, I had a stand up argument about applying for a blue badge with a lady from sight concern, she argues that if I came out of a supermarket for example and I am used to the light in there, and it was very sunny or dark when I came out I would be unable to navigate myself across the car park safely, I remember sitting with this stupid form in front of me and refusing to answer the questions properly, the woman kept sighing and I wanted to tell her where to shove the form...she took the form and posted it for me,,,,, bugger me if a few weeks later a bloody blue badge lands on my doormat, I hated looking at it, until one day I had to go to the QE2 for a certain test, there was no where to park so my ex parked on a side street, when we came out, my eyes had been dilated and I kept tripping over things, so he left me standing on the corner of the road on a grass verge while he got the car....I hear a car draw up, and I feel for the door handle and get in....you can guess the rest, I still wonder whose car I had got in, no words were exchanged as soon as my backside touched the seat I knew I was in the wrong car and leapt out, the person quickly drove off, and I stood there trying to act cool.
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