I recon I could probably write a blog completely based on bus journeys and the bus travellers, 'The fascinating world of the bus journeys' it could be called. I swear I am attracted to drama, this week as I was standing at the bus stop a old man came and stood beside me and started chatting about the fact that he had mislaid a ten pound note, he felt sure it was in his flat somewhere but he has searched everywhere and checked his wallet a thousand times but he just couldn't find it, so he walked to the post office in case it had fallen out of his coat pocket when he went to buy his news paper this morning, but he couldn't see it. Clearly the loss of the £10 was really bothering him so I sympathised and agreed that its really upsetting when you loose something. Anyway, this meant that the old guy was going into town to the bank to with-draw £100.....Don't ask me why loosing £10 means you need to get £100 cash to replace it, but, hey, its none of my business. The bus trundles to our stop and we get on, I go to my usual spot, always toward the back of the bus, up the first step and the first row to the left...the old guy took the seat at the front. Off we go on the journey and I tune into a lady's conversation who was sitting in the seats in front of me with her mate who was sitting a couple of seats down, she was announcing to all who would listen that her husband had a stroke and couldn't be left on his own, and what an awful time she was having, bla, bla, bla.....the then points her thumb toward the old fella sitting next to her and says...yeah, I have to bring him everywhere I go now!! I felt my jaw drop open, the poor old man was slumped against the window, and his limp arm kept sliding off his lap and then he would spend five minutes trying to reach the limp arm with the good arm, as his Mrs sat happily ignoring him, I couldn't help wondering how many years they had been married, and my heart felt so heavy for him, I was so preoccupied with feeling sad that I didn't notice that the old fella from the bus stop had made his way up the bus and had sat next to me, saying....You'll never guess what my love?... I just took off my cap because it felt itchy and you will never believe it, there was £20 in it!!! So it wasn't £10 I had lost it was £20 and I hadn't lost it, it was in my cap all the time. He nudged me with his elbow and chuckled to himself all they way back to his seat...that it, where the hell do you find those magic caps that turn £10 in to £20?
By the time we had got into town and I had all this extra information floating around my head, I had no idea why I had gone in the first place, so I wondered around and brought some bread then caught the bus back home, walked through my front door and remembered I had gone for dog poo bags!
Last Sunday, I was desperate to go to disabled swim. so armed with my cane and my youngest daughter we braved it. I am so glad I did, I met a lovely group of people and it was a really relaxed atmosphere, we managed 20 lengths, which for me is really good and after I felt like I had done some quality exercise, this week its cancelled due to a swimathon, and everyone was having a right moan as they should slot disabled swim in else-where, I felt I didn't really have the right to give my view as it was my first time at the swim, so I left it to the others.
My Daughter and I went again on Monday morning but only managed 15 lengths as it was too busy. I have spent the rest of the week eating the calories I burnt off swimming!
Next week I have yet another trip to the Royal Albert Hall courtesy of RNIB Connect. Symphonic Rock, Royal Philharmonic Orchestra, in return for a review. I brought my train tickets today, and now have a handy little blue pouch to put my ticket in, apparently according to the lady in the booth at the train station, I shouldn't loose my ticket if I am using the pouch...we will see!! Its a 3pm performance so going home will be rush hour(s) so Mum and I have decided to go to eat afterwards and let the commuters commute their way home without me getting in their way and cracking their ankles with my cane...kind ent I?
My poor little doggie has really struggled this week with the weather, Thunder terrifies him and he gets really stressed. We've had two really big storms which resulted in Ralph being shut in his crate with a blanket over it until he stopped shaking and panting, he has been a miserable bugger ever since and seems to be spending a lot of time curled up in his bed, following me around like a lost lamb, or standing on the patio outside looking up at the sky watching the clouds, however, he is eating much more than usual, comfort eating its called in humans!
This week I have started to ease myself into a regular familiar routine, and am finding it really frustrating. Thursday I was on a complete high and came home full of energy, walked Ralph, did some washing and ironing, cooked tea and my brain was still functioning well enough to have an intelligent conversation with the family...Friday things were completely different, I came home feeling absolutely exhausted, Ralph assumed as soon as I walked in the front door that we would be marching off on a lovely long walk, peeing up every plant that he sees and exploring the marvellous variation of sticks one can find on a dog walk, he was in for a shock when I plonked myself straight on the sofa with my coat still on and fell fast asleep, when I woke up an hour later, the rain was thundering on the conservatory roof and I felt awful, my limbs felt heavy and if I didn't know better I would have said I was coming down with flu, for the rest of the day I dragged myself around the house, falling asleep every time I sat down, I couldn't make a simple conversation make sense so I gave up talking and went to bed. The next day I felt just as bad except I had a stonking head ache to go with it, I wish more people understood how exhausting life can be when your sight is poor, in fact I wish I could swap with a few people for a few hours so they see what I see, and feel the emotions that float around in my head each day, understand how exhausting concentrating is and feel my frustration when my brain freezes and blocks any other messages from anywhere because its still trying to make sense of the job I was doing two minutes before I started the next task or conversation, my brain and eyes are constantly battling against each other and a couple of times this week my brain has projected an image that isn't there, this is the first time this has happened for 'real'. I have heard of this happening in some sight conditions, and a long time ago I wasn't sure what I was seeing and dismissed it, but this week I had definite images of things and people that were definitely not there, which isn't so good when you are standing at the train station watching a train come in then you glance away, look back at the train and its not there, firstly it made me jump and secondly the feeling of sadness and foolishness is overwhelming, but most of all, how can I trust my brain to project truthful images? and what happens if it decided to remove images, what happens if I go to cross a road and my brain decides not to detect a lorry barrelling along, of course, my ears and hearing will counter out that possibility I suppose but its all a bit scary. A few times I have sworn that I have seen Ralph or one of the girls in the same room as me when they are actually not, and a peculiar thing happened in Asda that I still don't fully understand now, my brain seems to be pulling up images from years ago and plonking them in front of me, some of them seem to be connected with familiar smells others are completely random, and as there standing in the middle of Asda was my Dad, the mans been gone for 21 years, but there he stood, donkey jacket and all. Asda is having a revamp and everything is moved about so I wondered if that was what triggered the image, either way its all very odd.
Well, I am off to prepare and organise myself for the week to come, and will let you know if the little blue pouch helps to keep my train tickets from getting themselves lost!!
Sunday, 29 April 2018
Sunday, 15 April 2018
Peach Doughnuts
Well, tomorrow is the big day, 8.30am and I will be meeting the lady who has come to risk assess me at work. I cant tell you how many different scenarios and out-comes have been going through my head or the hours I have laid awake in bed worrying about the future, how I am going to pay my bills, and how the outcome will effect me emotionally. It feels a lonely world when all these feelings and thoughts are running around in your mind and there's nothing you can do about it. Just when you think you have a plan, a nagging doubt will wriggle its way into your organised and happy zone and the image you have created comes crashing down around your feet along with your mood, self-esteem and whatever that little thing inside us is called that makes us want to get up and fight each time we get knocked down.
So, the truth is I have no bloody idea what will happen, and there is absolutely nothing I can do about it, all I can do is slow it down, enjoy each moment I am still able to be in school and try my best to be as honest as I can.....Like I have said before, pretending you can do something when you cant is a bit of a fine art that people with sight problems seem to naturally adhere to, I don't know why, pride or embarrassment maybe, or perhaps its easier to pretend than keep expecting people to remember.
I keep wishing I could just have a tiny peek into the future, not loads ahead, maybe just a year, just to give me reassurance that I will be ok, but that peek comes with disadvantages too I suppose and you might just be peeking at something that you really don't want to see, so its back to the here and now.
Yesterday the sun shone, for the first time in well over two weeks we had a full day without rain, freezing temperatures and grey skies, this helped with my overactive imagination as instead of sitting on the sofa eating chocolate and crap, then feeling guilty because I am becoming too fat for my jeans, so spiral into the familiar cycle of worrying about stuff that there's bugger all that can be done about, I went into the garden. Now I don't know if I told you about the day the fish pond emptied and left the fish splashing around in a tiny drop of water and the outside tap was frozen so we had a bucket relay from the kitchen through the house to the back door where someone took the bucket, stomped over the snow to the fish pond, This seemed a fab idea at the time, the first two buckets went off along the line ok, but the third one was less helpful, after I filled it to the top, lifted it out of the kitchen skin and discovered it had a big crack in the bottom sending very cold water all over me, Ralph (who was standing at my feet wondering what the hell was going on) and the kitchen floor....I remember shouting a warning for whoever dared to laugh would find themselves head first in the fish pond. It took ages to fill the pond, but eventually the fish were happy and the pump was turned back on, only to find the following morning the pond was completely empty again. This time, the youngest daughter filled a bucket, put the fish into the bucket and we delivered the fish to Mum's fish pond where the fish must feel like the have moved from a tiny cottage to a stately home.
We turned off the pump and ignored the pond for the rest of the winter, yesterday however, as the warm sun shone I noticed a nasty smell coming from the pond and on further inspection I realised that there wasn't a hole in the lining as the pond was half full again with a grim foul smelling stagnant water so the problem must have been with the pump. So I dismantled the pump, emptied the disgusting water and cut out the pond liners with a Stanley knife (only one slice to my knuckle) and began to empty all the old soil out of last years pots into the empty fish pond. This took me literally hours and was a very welcome distraction from wallowing in my bleak looking future, youngest daughter came out to assist, which meant sitting on her backside barking orders on how to be more careful while balancing on the edge for the fish pond with a Stanley knife, but as usual she came out top as she suggests we plant a tree in the hole. I finished the day covered in dirt, old fish poo, pond weed and there was enough twigs and leaves in my hair to make a small fire but I felt good. This Moring (Sunday) the happy content feeling was still there so I decided Ralph and I would walk to the garden centre to look for trees to go in our fish pond. I fancied a Cherry tree, one daughter wanted a cherry blossom and the other wanted a Olive tree. One day of sunshine and I had forgotten how much rain we have had over the last free weeks and wearing white trainers on our walk wasn't the best idea, avoiding mud and really big puddles meant it took us twice as long as it usually would to walk the three miles from my house to the garden centre. I didn't think about work or anything much all the way there, I focused on where I was walking and enjoyed looking! As we turned into the garden centre, the first thing I noticed was that the car park was full, I hesitated for a few seconds, then thought, Noooo, I;ve been here a million times, how bad and busy can it be???? VERY bloody busy actually, I put Ralph on a short lead, much to his disappointment as he likes to pee up against every plant he sees regardless if its in someone's shopping basket or not and tried to make my way to the 'Bargain bench' this is the 'safe' place, I know these fair-weather gardeners will be looking at all the fresh new plants and the old pot bound plants wont be getting so much attention, I phoned home to request rescuing and told them I would be hiding with my back against the crowd pretending to be engrossed in the curious, half dead looking plants on the bench. From the entrance to the bargain bench is a wide straight path, today filled with what felt like a million obstacles and hundred people. Totally focused on reaching the safe place I made my way slowly though the people, half way along the path I head a very familiar noise which could only be made by a familiar young lady, before I could see her I knew who it was and I knew she would be with her family. I don't think I have ever been so pleased to see this young lady and her Mum, it took a few minutes for her to remember my name, but instantly I had been distracted and inwardly comforted by people who know me, people who understand . Those few minutes standing talking completely settled me. I want to thank you for that, you don't know how much you helped me this morning. I walked to the bench and spent the rest of the time as Ralph and I waited for our rescuers smiling as I remembered all the lovely times I had experienced working with the young lady I had just been speaking to, what a fantastic group of children I have worked with over the years and what an amazing bunch of staff too, nothing will take those memories away.
The daughters arrived and we went to look at the trees....we wondered up and down, again no-one really wanted to be looking at trees so we were able to have a stroll, we discovered Peach trees, YES Peach! So we will be purchasing a peach tree in the near future to be planted in the middle of a ex-fish pond, its blossom is beautiful and has a faint niff, and the fruit it produces in late August is flat peaches...sold in Asda as Peach Doughnuts!!
Well, cross everything for me for tomorrow and I will let you know how it goes.
Oh, before I go, I took a photo of Ralph deciding that daughter number two's hoola hoop now belongs to him! See, this is what I have to put up with...Small dog, big ideas!! xx
So, the truth is I have no bloody idea what will happen, and there is absolutely nothing I can do about it, all I can do is slow it down, enjoy each moment I am still able to be in school and try my best to be as honest as I can.....Like I have said before, pretending you can do something when you cant is a bit of a fine art that people with sight problems seem to naturally adhere to, I don't know why, pride or embarrassment maybe, or perhaps its easier to pretend than keep expecting people to remember.
I keep wishing I could just have a tiny peek into the future, not loads ahead, maybe just a year, just to give me reassurance that I will be ok, but that peek comes with disadvantages too I suppose and you might just be peeking at something that you really don't want to see, so its back to the here and now.
Yesterday the sun shone, for the first time in well over two weeks we had a full day without rain, freezing temperatures and grey skies, this helped with my overactive imagination as instead of sitting on the sofa eating chocolate and crap, then feeling guilty because I am becoming too fat for my jeans, so spiral into the familiar cycle of worrying about stuff that there's bugger all that can be done about, I went into the garden. Now I don't know if I told you about the day the fish pond emptied and left the fish splashing around in a tiny drop of water and the outside tap was frozen so we had a bucket relay from the kitchen through the house to the back door where someone took the bucket, stomped over the snow to the fish pond, This seemed a fab idea at the time, the first two buckets went off along the line ok, but the third one was less helpful, after I filled it to the top, lifted it out of the kitchen skin and discovered it had a big crack in the bottom sending very cold water all over me, Ralph (who was standing at my feet wondering what the hell was going on) and the kitchen floor....I remember shouting a warning for whoever dared to laugh would find themselves head first in the fish pond. It took ages to fill the pond, but eventually the fish were happy and the pump was turned back on, only to find the following morning the pond was completely empty again. This time, the youngest daughter filled a bucket, put the fish into the bucket and we delivered the fish to Mum's fish pond where the fish must feel like the have moved from a tiny cottage to a stately home.
We turned off the pump and ignored the pond for the rest of the winter, yesterday however, as the warm sun shone I noticed a nasty smell coming from the pond and on further inspection I realised that there wasn't a hole in the lining as the pond was half full again with a grim foul smelling stagnant water so the problem must have been with the pump. So I dismantled the pump, emptied the disgusting water and cut out the pond liners with a Stanley knife (only one slice to my knuckle) and began to empty all the old soil out of last years pots into the empty fish pond. This took me literally hours and was a very welcome distraction from wallowing in my bleak looking future, youngest daughter came out to assist, which meant sitting on her backside barking orders on how to be more careful while balancing on the edge for the fish pond with a Stanley knife, but as usual she came out top as she suggests we plant a tree in the hole. I finished the day covered in dirt, old fish poo, pond weed and there was enough twigs and leaves in my hair to make a small fire but I felt good. This Moring (Sunday) the happy content feeling was still there so I decided Ralph and I would walk to the garden centre to look for trees to go in our fish pond. I fancied a Cherry tree, one daughter wanted a cherry blossom and the other wanted a Olive tree. One day of sunshine and I had forgotten how much rain we have had over the last free weeks and wearing white trainers on our walk wasn't the best idea, avoiding mud and really big puddles meant it took us twice as long as it usually would to walk the three miles from my house to the garden centre. I didn't think about work or anything much all the way there, I focused on where I was walking and enjoyed looking! As we turned into the garden centre, the first thing I noticed was that the car park was full, I hesitated for a few seconds, then thought, Noooo, I;ve been here a million times, how bad and busy can it be???? VERY bloody busy actually, I put Ralph on a short lead, much to his disappointment as he likes to pee up against every plant he sees regardless if its in someone's shopping basket or not and tried to make my way to the 'Bargain bench' this is the 'safe' place, I know these fair-weather gardeners will be looking at all the fresh new plants and the old pot bound plants wont be getting so much attention, I phoned home to request rescuing and told them I would be hiding with my back against the crowd pretending to be engrossed in the curious, half dead looking plants on the bench. From the entrance to the bargain bench is a wide straight path, today filled with what felt like a million obstacles and hundred people. Totally focused on reaching the safe place I made my way slowly though the people, half way along the path I head a very familiar noise which could only be made by a familiar young lady, before I could see her I knew who it was and I knew she would be with her family. I don't think I have ever been so pleased to see this young lady and her Mum, it took a few minutes for her to remember my name, but instantly I had been distracted and inwardly comforted by people who know me, people who understand . Those few minutes standing talking completely settled me. I want to thank you for that, you don't know how much you helped me this morning. I walked to the bench and spent the rest of the time as Ralph and I waited for our rescuers smiling as I remembered all the lovely times I had experienced working with the young lady I had just been speaking to, what a fantastic group of children I have worked with over the years and what an amazing bunch of staff too, nothing will take those memories away.
The daughters arrived and we went to look at the trees....we wondered up and down, again no-one really wanted to be looking at trees so we were able to have a stroll, we discovered Peach trees, YES Peach! So we will be purchasing a peach tree in the near future to be planted in the middle of a ex-fish pond, its blossom is beautiful and has a faint niff, and the fruit it produces in late August is flat peaches...sold in Asda as Peach Doughnuts!!
Well, cross everything for me for tomorrow and I will let you know how it goes.
Oh, before I go, I took a photo of Ralph deciding that daughter number two's hoola hoop now belongs to him! See, this is what I have to put up with...Small dog, big ideas!! xx
Sunday, 8 April 2018
Assessing Risk
I feel like I should apologise to you all for not blogging for a while, but I'm not going too! The truth is I am caught up in 'change' at the moment and the whole point of writing a blog is to help others who are going through the same sort of things feel like they are not alone, and for me to download and try to make some sort of sense of the things that are happening.
I am not sure how much I can share with you but I have reached a really scary point in my life and I just want to fast forward it. As you know I have lost more of the vision in my good eye, have a big black floater which distorts the vision I do have and a small hole has appeared in the retina since last September. This has meant that I have been signed off unfit for work since then, I have spent the months since then going to Moorfields for check ups and readjusting to the new level of sight and dealing with this stupid floater. To start with I was very nervous going anywhere other than my home and I had some really nasty headaches, but gradually as time has worn on the head aches have grown less frequent provided I don't 'over-do' activities during the day and don't get too stressed out. The thing that has been the hardest is every day is so completely different and I just cant seem to keep up with it. Before the floater dull days used to be perfect light for me outside, now they have become dangerous as added to the dull, there is the black smudge which means parts of my vision is missing, making crossing the road dangerous and basically doing anything where there is lots of movement almost impossible. I manage by weighing up the importance of doing an activity..like going to the bank, or doing the shopping...with weather conditions, how I am feeling on the day and what the public are doing outside of my nice safe house, so, I wouldn't go shopping into town or to a big supermarket on a Friday or a weekend, I am happy to go into a small supermarket or into town provided I can leave if its too busy and have nothing specific to buy, that way the pressure for actually looking is off. I also wouldn't go for a swim during school holidays or weekends but I know that Mondays at 12 noon are usually the perfect time to go. All this learning what I cant and can do and predicting the best time to do things just doesn't come easily and has taken the best part of six months to regain some confidence in trusting myself to do things safely.
As my confidence improved so did my need to get back to work and get back to what I used to be able to do, so I spoke to my Doctor and I had a meeting at work with my boss and my representative from RNIB, and it was agreed that I could be signed back fit to work, I would have to have a risk assessment so I wouldn't be able to work with the children until after the assessment had taken place, I found this hugely frustrating, slightly demeaning as I felt that after working with these children for fourteen years I was suddenly some sort of terrible risk to them, I went home feeling crushed, however my boss agreed that I could go into school an hour before the children got in to the classrooms in the mornings to reacquaint my self with the building, my classroom, the staff and actually the whole procedure of getting myself from my warm cosy bed to work, which was exhausting in its self.
The first morning was so exciting, I caught up with everyone and disappeared as the buses brought the children in, when I got home I went back to bed and slept for three hours because I was so tired. The second day was much the same, walking around the corridors and chatting to people, this time when I got home I had the worst headache ever, so back to bed I went again. I carried on and did a couple more mornings building up the time so that I was staying until after the children had come in and then leave once I had said 'hello' to them. On the last day before the start of the Easter holidays, I stayed a bit longer, I think I was expecting school life to be much the same for me, but it wasn't. I came home in a foul mood, feeling light headed and sick, my heart beating in my throat and just wanting to cry. So, once again I took myself to bed and cried until I fell asleep. The next few days I slipped into a bit of a depression and I just couldn't figure out why and it took a very wet day and a 'talking-stick' session with the family (we have to use a talking stick in our house, which isn't really a stick, we use the remote control for the telly, otherwise everyone just screams over everyone else) to fully understand what I was feeling, it also took me those few days of sitting on the edge of my bed staring in to space to accept that I was the one who had changed and not the environment around me, work was no more challenging than its always been but I am just unable to keep up with it now. It has taken a lot of soul searching to admit to myself that I may not be safe in the role I used to do, it has also been a struggle to accept that there are no other roles that can be offered to me within my present employment.
But now I get it, I really do get it. My usual reaction to anything that I feel I am failing at is that I am clearly not trying hard enough to achieve what I want and failure has never been an option, I have always pushed myself to my limit but the limit has been moved and I didn't see it coming at all!! (excuse the pun) The problem is, my brain as soon as I got into work, was screaming at me to perform at my usual speed, to work as the 'guide' of our classroom staff and to generally get back to bossing the hell out of everyone...staff and pupils included. But I hit a brick wall so to speak, I just cant perform at a level that I am comfortable with, I cannot track the movements around me quick enough for them to register in my brain and so it was making me unsteady on my feet, I couldn't cope with the noise level at all and so I was in danger of shutting down or having a complete panic attack, I couldn't hear what people were saying because I couldn't filter out all the unimportant noises like normal people do, I now fully understand the need for a risk assessment and to start with I felt a complete useless failure.
Then someone told me that I had shown great courage to even consider going back to work, to instigate the return to work procedure but it takes an even greater courage to acknowledge the fact that I am not the person I was and I cannot do the things I once could do. I am happy doing things slowly and comfortably and I know deep down inside I wont pass any risk assessment and for the most part now I have to prepare myself for the future. I cannot feel sad or bear any grudge for what is being mapped out for me because as they say one door closes and another one opens.
Like I say, I feel in a very hard place at the moment because I feel that I should be sharing these thoughts and feelings with you as some of you may be going though the same things, but I am not sure how much I can say. If there is one piece of advise I can offer, its stay honest with yourself and go with those gut feelings, mostly they are right! Treat your employers like friends not enemies, no one knows what people are really thinking, but you have to look at the bigger picture, consider the people around you in your work-place. Because of the person I was, the willingness to step up and take the lead and the speed in which I worked makes me a risk, I will never be able to slow down or take a back seat and that will cause risk to the ladies I love to work alongside, the children who have become part of my heart and a risk to myself.
I don't want to finish on a heavy note, so let me tell you about these pebble things I discovered, well, I didn't discover them, they were some one else's idea, all around the country people are painting pebbles or rocks and leaving them in places for people to find, when you find one you either pick it up and re-hide it or take it home, paint a new one and replace the one you took home, I am thinking about getting someone to help me paint two..one with the RNIB logo on and the other with Moorfields logo on and see how far they travel, look out for my rocks everyone!
I found (well Ralph found it really, sniffing it thinking it was something delish to eat) this one on a wall xx
I am not sure how much I can share with you but I have reached a really scary point in my life and I just want to fast forward it. As you know I have lost more of the vision in my good eye, have a big black floater which distorts the vision I do have and a small hole has appeared in the retina since last September. This has meant that I have been signed off unfit for work since then, I have spent the months since then going to Moorfields for check ups and readjusting to the new level of sight and dealing with this stupid floater. To start with I was very nervous going anywhere other than my home and I had some really nasty headaches, but gradually as time has worn on the head aches have grown less frequent provided I don't 'over-do' activities during the day and don't get too stressed out. The thing that has been the hardest is every day is so completely different and I just cant seem to keep up with it. Before the floater dull days used to be perfect light for me outside, now they have become dangerous as added to the dull, there is the black smudge which means parts of my vision is missing, making crossing the road dangerous and basically doing anything where there is lots of movement almost impossible. I manage by weighing up the importance of doing an activity..like going to the bank, or doing the shopping...with weather conditions, how I am feeling on the day and what the public are doing outside of my nice safe house, so, I wouldn't go shopping into town or to a big supermarket on a Friday or a weekend, I am happy to go into a small supermarket or into town provided I can leave if its too busy and have nothing specific to buy, that way the pressure for actually looking is off. I also wouldn't go for a swim during school holidays or weekends but I know that Mondays at 12 noon are usually the perfect time to go. All this learning what I cant and can do and predicting the best time to do things just doesn't come easily and has taken the best part of six months to regain some confidence in trusting myself to do things safely.
As my confidence improved so did my need to get back to work and get back to what I used to be able to do, so I spoke to my Doctor and I had a meeting at work with my boss and my representative from RNIB, and it was agreed that I could be signed back fit to work, I would have to have a risk assessment so I wouldn't be able to work with the children until after the assessment had taken place, I found this hugely frustrating, slightly demeaning as I felt that after working with these children for fourteen years I was suddenly some sort of terrible risk to them, I went home feeling crushed, however my boss agreed that I could go into school an hour before the children got in to the classrooms in the mornings to reacquaint my self with the building, my classroom, the staff and actually the whole procedure of getting myself from my warm cosy bed to work, which was exhausting in its self.
The first morning was so exciting, I caught up with everyone and disappeared as the buses brought the children in, when I got home I went back to bed and slept for three hours because I was so tired. The second day was much the same, walking around the corridors and chatting to people, this time when I got home I had the worst headache ever, so back to bed I went again. I carried on and did a couple more mornings building up the time so that I was staying until after the children had come in and then leave once I had said 'hello' to them. On the last day before the start of the Easter holidays, I stayed a bit longer, I think I was expecting school life to be much the same for me, but it wasn't. I came home in a foul mood, feeling light headed and sick, my heart beating in my throat and just wanting to cry. So, once again I took myself to bed and cried until I fell asleep. The next few days I slipped into a bit of a depression and I just couldn't figure out why and it took a very wet day and a 'talking-stick' session with the family (we have to use a talking stick in our house, which isn't really a stick, we use the remote control for the telly, otherwise everyone just screams over everyone else) to fully understand what I was feeling, it also took me those few days of sitting on the edge of my bed staring in to space to accept that I was the one who had changed and not the environment around me, work was no more challenging than its always been but I am just unable to keep up with it now. It has taken a lot of soul searching to admit to myself that I may not be safe in the role I used to do, it has also been a struggle to accept that there are no other roles that can be offered to me within my present employment.
But now I get it, I really do get it. My usual reaction to anything that I feel I am failing at is that I am clearly not trying hard enough to achieve what I want and failure has never been an option, I have always pushed myself to my limit but the limit has been moved and I didn't see it coming at all!! (excuse the pun) The problem is, my brain as soon as I got into work, was screaming at me to perform at my usual speed, to work as the 'guide' of our classroom staff and to generally get back to bossing the hell out of everyone...staff and pupils included. But I hit a brick wall so to speak, I just cant perform at a level that I am comfortable with, I cannot track the movements around me quick enough for them to register in my brain and so it was making me unsteady on my feet, I couldn't cope with the noise level at all and so I was in danger of shutting down or having a complete panic attack, I couldn't hear what people were saying because I couldn't filter out all the unimportant noises like normal people do, I now fully understand the need for a risk assessment and to start with I felt a complete useless failure.
Then someone told me that I had shown great courage to even consider going back to work, to instigate the return to work procedure but it takes an even greater courage to acknowledge the fact that I am not the person I was and I cannot do the things I once could do. I am happy doing things slowly and comfortably and I know deep down inside I wont pass any risk assessment and for the most part now I have to prepare myself for the future. I cannot feel sad or bear any grudge for what is being mapped out for me because as they say one door closes and another one opens.
Like I say, I feel in a very hard place at the moment because I feel that I should be sharing these thoughts and feelings with you as some of you may be going though the same things, but I am not sure how much I can say. If there is one piece of advise I can offer, its stay honest with yourself and go with those gut feelings, mostly they are right! Treat your employers like friends not enemies, no one knows what people are really thinking, but you have to look at the bigger picture, consider the people around you in your work-place. Because of the person I was, the willingness to step up and take the lead and the speed in which I worked makes me a risk, I will never be able to slow down or take a back seat and that will cause risk to the ladies I love to work alongside, the children who have become part of my heart and a risk to myself.
I don't want to finish on a heavy note, so let me tell you about these pebble things I discovered, well, I didn't discover them, they were some one else's idea, all around the country people are painting pebbles or rocks and leaving them in places for people to find, when you find one you either pick it up and re-hide it or take it home, paint a new one and replace the one you took home, I am thinking about getting someone to help me paint two..one with the RNIB logo on and the other with Moorfields logo on and see how far they travel, look out for my rocks everyone!
I found (well Ralph found it really, sniffing it thinking it was something delish to eat) this one on a wall xx
Tuesday, 27 March 2018
Liability
The review I wrote for the RNIB last week has been published in their on-line news letter had I have had an email saying how good they thought it was and would I like to do an radio interview about my experiences at the Royal Albert hall to see if I can help to encourage others to register an interest in attending an event. Of course, I didn't want to sound too eager so I left it a day before relying ERRRR YESSSSS! I am waiting further instructions and a date.
Once again I have been traveling the emotional rollercoaster that seems to be my life at the moment. I am so looking forward to getting back to work and have started popping in for an hour before school starts and the children come in just to, 1; have a chat and a catch up with everyone which sounds mundane and such an easy task for regular folk, but I find it exhausting concentrating on what people are sharing with me, I just wouldn't be able to manage being social as well as concentrating on the things I need to do within the classroom. 2; get familiar with my surroundings again, I have been away from work for six months, things change. The classroom is now a completely different set up to what it was in September, and as soon as I walked into the school, new carpet smell hit me...new carpets are confusing. 3; Regular folk leap out of bed in the mornings and get their act together and charge off, It doesn't matter to them that they haven't put the bins out or walked the dog, or thought about what's for tea, or made sure every thing is tidy before they leave the house and that's because these things can be done later. I spend my life anticipating and considering how I will be feeling later. Starting back to work is going to be exhausting, so I need to ensure some of the jobs are done before I go to work in order to take the pressure off later on, there are loads of things to consider, later might be too dark to walk the dog or put the bins out, the weather might change and suddenly the sun is so bright I cant see where I am walking the dog. Or what about if I come home and I have done too much and have a 'warning' head ache and need to sleep, my girls will still need feeding. I know they can cook for themselves but there are only so many times you can eat Katsu curry and gingerbread people in one week. Forward thinking and organisation are the key. On top of very thing else its still important that I am Mum first, my girls must feel that there is time to talk to me, time to share worries and download their day, no matter what kind of day its been, and that's something which can easily get lost in the rush and bustle of home/work life and before you know it your child has had a crap day and instead of talking to you they are shooting aliens on their IPad or spouting it all over Facebook.
All that said, I do sometimes feel like a complete failure and for the very first time the other night I felt like a liability. This came as the light bulb had gone in the porch and I cant manage without it, so, I got my stool, turned the light switch to off position, climbed upon my stool and fumbled about with the downlight bulb until I figured out that it was a screw fit, I climbed back down from my stool with lightbulb tucked safely in the pocket of my dressing gown and wondered into the kitchen to find a bulb with the same sort of fitting, the bulb I found had the same screw fitting but was a round bulb instead of a downlight sort, so up on the stool again I fiddled around again in the dark and found that the bulb screw quite nicely into the hole, down the stool again, turned on the light and hey presto, the light was working again, so I left the light on, put my stool away and carried on doing jobs. About half an hour later I opened the hall door to hang a coat up and the foulest smell of burning electricity slapped me round the face, at first I thought it was coming from outside until a helpful daughter informed me that the light bulb was going black. Out came the stool again and with a tea towel I removed the incorrect light bulb and replaced it with a different one which looked more like the one that came out originally, turned the light back on and the smell went away. I was pleased with myself for all of about 20 seconds until I realised that I couldn't even change a light bulb on my own without nearly setting fire to the house. I sat on my stool and wondered about the future, how on earth can I be trusted on my own when the girls have left home? Will I have to go into a residential home? Pure panic set in as I sat on the stool and I felt like I was just kidding myself that I can manage to do things independently. I haven't felt that sad and empty for a long time, sometimes taking each day as it comes just isn't enough, I want to know when it is the right time to say, right, I can no longer do that particular job properly or safely so I need to ask someone else to do it, or do I just keep on trying until I electrocute myself or fall off the stool?
All this has left me with a very bad feeling that I cant shake off, I feel like I am suddenly walking a very thin line and I am afraid to cross it because there is no going back.
I am sure that everything will fall into place and hopefully the future will seem clearer, but for now, to be honest I am shit scared. x
Once again I have been traveling the emotional rollercoaster that seems to be my life at the moment. I am so looking forward to getting back to work and have started popping in for an hour before school starts and the children come in just to, 1; have a chat and a catch up with everyone which sounds mundane and such an easy task for regular folk, but I find it exhausting concentrating on what people are sharing with me, I just wouldn't be able to manage being social as well as concentrating on the things I need to do within the classroom. 2; get familiar with my surroundings again, I have been away from work for six months, things change. The classroom is now a completely different set up to what it was in September, and as soon as I walked into the school, new carpet smell hit me...new carpets are confusing. 3; Regular folk leap out of bed in the mornings and get their act together and charge off, It doesn't matter to them that they haven't put the bins out or walked the dog, or thought about what's for tea, or made sure every thing is tidy before they leave the house and that's because these things can be done later. I spend my life anticipating and considering how I will be feeling later. Starting back to work is going to be exhausting, so I need to ensure some of the jobs are done before I go to work in order to take the pressure off later on, there are loads of things to consider, later might be too dark to walk the dog or put the bins out, the weather might change and suddenly the sun is so bright I cant see where I am walking the dog. Or what about if I come home and I have done too much and have a 'warning' head ache and need to sleep, my girls will still need feeding. I know they can cook for themselves but there are only so many times you can eat Katsu curry and gingerbread people in one week. Forward thinking and organisation are the key. On top of very thing else its still important that I am Mum first, my girls must feel that there is time to talk to me, time to share worries and download their day, no matter what kind of day its been, and that's something which can easily get lost in the rush and bustle of home/work life and before you know it your child has had a crap day and instead of talking to you they are shooting aliens on their IPad or spouting it all over Facebook.
All that said, I do sometimes feel like a complete failure and for the very first time the other night I felt like a liability. This came as the light bulb had gone in the porch and I cant manage without it, so, I got my stool, turned the light switch to off position, climbed upon my stool and fumbled about with the downlight bulb until I figured out that it was a screw fit, I climbed back down from my stool with lightbulb tucked safely in the pocket of my dressing gown and wondered into the kitchen to find a bulb with the same sort of fitting, the bulb I found had the same screw fitting but was a round bulb instead of a downlight sort, so up on the stool again I fiddled around again in the dark and found that the bulb screw quite nicely into the hole, down the stool again, turned on the light and hey presto, the light was working again, so I left the light on, put my stool away and carried on doing jobs. About half an hour later I opened the hall door to hang a coat up and the foulest smell of burning electricity slapped me round the face, at first I thought it was coming from outside until a helpful daughter informed me that the light bulb was going black. Out came the stool again and with a tea towel I removed the incorrect light bulb and replaced it with a different one which looked more like the one that came out originally, turned the light back on and the smell went away. I was pleased with myself for all of about 20 seconds until I realised that I couldn't even change a light bulb on my own without nearly setting fire to the house. I sat on my stool and wondered about the future, how on earth can I be trusted on my own when the girls have left home? Will I have to go into a residential home? Pure panic set in as I sat on the stool and I felt like I was just kidding myself that I can manage to do things independently. I haven't felt that sad and empty for a long time, sometimes taking each day as it comes just isn't enough, I want to know when it is the right time to say, right, I can no longer do that particular job properly or safely so I need to ask someone else to do it, or do I just keep on trying until I electrocute myself or fall off the stool?
All this has left me with a very bad feeling that I cant shake off, I feel like I am suddenly walking a very thin line and I am afraid to cross it because there is no going back.
I am sure that everything will fall into place and hopefully the future will seem clearer, but for now, to be honest I am shit scared. x
Tuesday, 20 March 2018
music to my ears
well, you will be pleased to hear that Mum and I managed to break our spell of disastrous trips into London on our visit to the Royal Albert last Wednesday night. In fact I have decided we are complete professionals at this now, provided its not rush hour, my ticket is safely stowed away in my purse and we leave in PLENTY of time.
Wednesdays performance didn't start until 7.30pm, so we caught the 2.24pm train into Finsbury park and then the tube to south Kensington. I know it seems like we were crazy early but I have learnt that slow and steady wins the race!
We strolled into the Victoria and Albert museum about 3pm which was perfect as most people had started to leave so I wasn't cracking peoples ankles with my cane, however I unfortunately discovered a major disadvantage to museums that I hadn't noticed before and I thank heavens it wasn't busy and that Mum was fully alert as I walked straight into the first glass cabinet. you know the sort I mean? Museums tend to dot them about with artefacts in them, they are usually in the middle of a room or along the walk-way, to me it just looked like the objects were in with whatever happened to be on the display behind the glass cabinets. Thinking about it I truly don't know how the alarm wasn't set off on the first one I hit. You know that scene in the newest Charlie and the Chocolate Factory where Willy-Wonka walks straight into his glass elevator after having his shoes shined by Charlie? That was me, and it hurt! By the time I had walked into the third glass cabinet Mum had had enough and suggested that we left the V&A quite quickly and went to look for somewhere to have food. There used to be a little Italian café just down the street from the V&A serving really lovely food and cake so off we went in search of it only to find that it had been replaced with a Lebanese café, we played it safe and had pasta, which was good but the cake was even better, there was just about every flavour cake you could imagine and I kinda figured that all that bumping into glass must have worked off some calories so I ordered this massive slice of black forest gateau and Mum had a Lebanese cheese cake which had a strange texture but tasted amazing.
By the time we had finished eating it was getting on for 5.15pm so we walked slowly back to the tube station and followed the signs to the Royal Albert, see, none of this getting lost this time or following stupid sat navs. The signs took us right to the front door of the RAH, and as usual I was struck by the awesomeness of this grand old building, it always makes me feel like I need to get a deck chair and sit outside and just look at the building for a while, and then take my chair inside and do the same. As we were early, we breezed through bag check and managed to get a table in the café without any problems, and there we sat with a glass of wine each, watching the steady flow of people coming into the building.
At 6.45 the door to our box was opened and we were shown to our seats. We got comfy and watched people taking their seats down below and marvelled over how clever we were to get to the hall with only a few near hits and misses with some glass cabinets and me falling down a kerb through miss-use of my cane (like I was pretending to look cool as I crossed the road in front of a line of traffic that consisted mostly of shinny BMW 4x4's and a couple of mercs, and fell straight off the kerb) and the biggest miracle of all was that my train ticket was still in my possession!!
As the musicians of the Royal Philharmonic Orchestra started to take their seats and tune up their instruments we were warned that there was strictly no photography, which didn't seem to make a jot of difference as people had their phones out and were snapping away.
I have never seen or head a Orchestra live before and so this experience was all new to me, and I wasn't at all prepared for what I heard. Having poor sight usually means that other senses are
enhanced and when the conductor started the overture the noise meeting my ears was extraordinary. I kept turning to Mum and asking her if she could hear what I was hearing, and for a moment it was a little emotional! When you listen to a song on the radio or through your device, you listen to the words and maybe sing along to the tune, but rarely do we think about what goes into making the 'tune' and every single instrument that is used to make a song, some of the instruments played in the orchestra really stood out for me, the percussionists were fundamental, every time a cymbal was tapped or a chime struck the noise exploded in my ears and I had to stop myself swinging round and asking if the people around me could hear it. When the vocalists came on and sang some favourites from the 'Best of Broadway' their voices were secondary to the beautiful sounds created by the musicians, even now as I am sitting here glancing at my programme and the titles of some of the songs played, I can still hear the orchestra in my memory but I cant remember what the voices of the vocalists sounded like, except may be Matt Henry who really does have one of the most glorious voices I have ever heard.
At the end of the night the orchestra and the vocalists performed a medley of ABBA songs which ended the night beautifully, the whole hall was singing along, I am once again grateful to the RNIB for the opportunity of experiencing something so spectacular.
The homeward journey was cold and we missed our connecting train but it didn't matter because as I crawled into bed at 12.30am I had a very big contented smile on my face and a eagerness to write my review of the Royal Philharmonic Orchestra at the Royal Albert Hall. x
Wednesdays performance didn't start until 7.30pm, so we caught the 2.24pm train into Finsbury park and then the tube to south Kensington. I know it seems like we were crazy early but I have learnt that slow and steady wins the race!
We strolled into the Victoria and Albert museum about 3pm which was perfect as most people had started to leave so I wasn't cracking peoples ankles with my cane, however I unfortunately discovered a major disadvantage to museums that I hadn't noticed before and I thank heavens it wasn't busy and that Mum was fully alert as I walked straight into the first glass cabinet. you know the sort I mean? Museums tend to dot them about with artefacts in them, they are usually in the middle of a room or along the walk-way, to me it just looked like the objects were in with whatever happened to be on the display behind the glass cabinets. Thinking about it I truly don't know how the alarm wasn't set off on the first one I hit. You know that scene in the newest Charlie and the Chocolate Factory where Willy-Wonka walks straight into his glass elevator after having his shoes shined by Charlie? That was me, and it hurt! By the time I had walked into the third glass cabinet Mum had had enough and suggested that we left the V&A quite quickly and went to look for somewhere to have food. There used to be a little Italian café just down the street from the V&A serving really lovely food and cake so off we went in search of it only to find that it had been replaced with a Lebanese café, we played it safe and had pasta, which was good but the cake was even better, there was just about every flavour cake you could imagine and I kinda figured that all that bumping into glass must have worked off some calories so I ordered this massive slice of black forest gateau and Mum had a Lebanese cheese cake which had a strange texture but tasted amazing.
By the time we had finished eating it was getting on for 5.15pm so we walked slowly back to the tube station and followed the signs to the Royal Albert, see, none of this getting lost this time or following stupid sat navs. The signs took us right to the front door of the RAH, and as usual I was struck by the awesomeness of this grand old building, it always makes me feel like I need to get a deck chair and sit outside and just look at the building for a while, and then take my chair inside and do the same. As we were early, we breezed through bag check and managed to get a table in the café without any problems, and there we sat with a glass of wine each, watching the steady flow of people coming into the building.
At 6.45 the door to our box was opened and we were shown to our seats. We got comfy and watched people taking their seats down below and marvelled over how clever we were to get to the hall with only a few near hits and misses with some glass cabinets and me falling down a kerb through miss-use of my cane (like I was pretending to look cool as I crossed the road in front of a line of traffic that consisted mostly of shinny BMW 4x4's and a couple of mercs, and fell straight off the kerb) and the biggest miracle of all was that my train ticket was still in my possession!!
As the musicians of the Royal Philharmonic Orchestra started to take their seats and tune up their instruments we were warned that there was strictly no photography, which didn't seem to make a jot of difference as people had their phones out and were snapping away.
I have never seen or head a Orchestra live before and so this experience was all new to me, and I wasn't at all prepared for what I heard. Having poor sight usually means that other senses are
enhanced and when the conductor started the overture the noise meeting my ears was extraordinary. I kept turning to Mum and asking her if she could hear what I was hearing, and for a moment it was a little emotional! When you listen to a song on the radio or through your device, you listen to the words and maybe sing along to the tune, but rarely do we think about what goes into making the 'tune' and every single instrument that is used to make a song, some of the instruments played in the orchestra really stood out for me, the percussionists were fundamental, every time a cymbal was tapped or a chime struck the noise exploded in my ears and I had to stop myself swinging round and asking if the people around me could hear it. When the vocalists came on and sang some favourites from the 'Best of Broadway' their voices were secondary to the beautiful sounds created by the musicians, even now as I am sitting here glancing at my programme and the titles of some of the songs played, I can still hear the orchestra in my memory but I cant remember what the voices of the vocalists sounded like, except may be Matt Henry who really does have one of the most glorious voices I have ever heard.
At the end of the night the orchestra and the vocalists performed a medley of ABBA songs which ended the night beautifully, the whole hall was singing along, I am once again grateful to the RNIB for the opportunity of experiencing something so spectacular.
The homeward journey was cold and we missed our connecting train but it didn't matter because as I crawled into bed at 12.30am I had a very big contented smile on my face and a eagerness to write my review of the Royal Philharmonic Orchestra at the Royal Albert Hall. x
Friday, 9 March 2018
Conclusions
I have concluded this week that sometimes consultants and/or doctors expect you to read between their lines, understand all their medical jargon and to 100% understand what they have told you as you leave their consulting room, they also expect you to remember all the medical jargon which you don't really understand from the minute you lift your backside off of the seat all the way home into your living room. Sometimes you take another pair of ears with you in the hope that the adult attached to the ears might understand the jargon better than you, and if not, well, your in trouble really.
Today I am actually fed up with this not being able to see feck all crap, and the reason is, yesterday I received a letter from Moorfields concluding the findings of my appointment last Thursday.
If I quickly remind you that last September the hospital said they had found a hole in the Macular of my left eye and it was at full thickness. I spent the next three months in tatters and a blubbering mess at the thought of a very dark and fuzzy future. Then I was told on my next visit in November that, HEYYYY Nope, that was a mis-diagnosis and its just a massive floater which we can remove but it would be a really big risk, off you pop for another three months sitting at home doing feck all and wait to see if the floater moves on its own.
Don't get me wrong, without these guys and their teams, firstly I wouldn't have had so much fun, but secondly and more importantly they were there when I needed them most, they knew what needed to be done and they got on with it, I have trust and respect for them beyond words, BUT they their ability to translate what they are saying from their educated mouths to my uneducated ears is shocking. I came away understanding four words...no hole...big floater. I was happy. And when the letter came from the hospital giving their findings, I never even glanced at it and just filed it away with all the other Moorfields related bits of paper.
But yesterday a week after my third appointment in less than six months, the letter plops on my door mat.
But yesterday, was a sad day for our family and because we had all cried a lot, I had removed my contact lenses and was looking for a distraction. With my glasses on I can read better if I hold the paper close to my face, much better than I can with my contact lenses in, in truth I think its fair to say I cant read or retain any information with my contacts in.
So there I sit on the sofa, Ralph curled up one side of me knowing something is dreadfully wrong, a confused number two daughter sitting the other side of me with a million questions and expecting honest answers so when they both dosed off the Moorfields letter seemed a happy relief from the age old question...'what happens after someone dies Mum?'
Sitting there with the paper pressed to my nose I start reading, name, address, hospital number......bla bla bla, Diagnosis: High Myopia...yep I know that. Bilateral posterior vitreous detachment with Weiss rings...What the actual F**k, so I turn to good old Google, and from what I can make out after reading through loads of stuff, its to do with the jelly in the eye detaching and guess what, its has left something called a lamellar hole, which is certainly no-where near the scale of a Macular hole, but nether the less at no point was a hole, lamellar or not mentioned to me at the appointment, (or so I thought) there is also something called macular shisis...don't ask me, I have no bloody clue.The next thing on the list is..Myopic foveo-schisis-stable....which is the 'floater' and yes it certainly is stable, unlike my temper at the moment.
Then on the back of the letter there is a sentence dis charging me until any changes occur. It then lists the changes and categorises them into 'Emergency, go straight to Moorfields A&E' OR gradual deterioration, get referred back to the clinic. Charming!
I recon I must have read the letter over and over again at least ten times before I leapt up sending daughter, dog, box of tissues and a whole mountain of soggy tissues into the air as I charged off to locate the previous letters from the hospital only to find the Lamellar hole was indeed mentioned in the letter from November and I was whole heartily dismayed to realise the only part of the conversation I remember from the appointment in November are those bloody four words...no hole...big floater. Plonking myself back down on the sofa and thinking back hard to that appointment I slowly remembered some words about jelly in the eye and some other words that I don't understand. I really wish they would explain all these things a bit better, I feel so scared that there are words in that letter that I don't understand, I don't know what will happen next. I can see that a consultant is dealing with your condition not you, so they don't need to worry that you are terrified because as far as they are concerned they have discovered the diagnosis and make plans for treatment. The moment they close your file they are not concerned with how you will be getting home, or how you will manage at work or how you cope with the diagnosis they have given you, because, and quite rightly so, they have done their job.
So I have concluded that there needs to be someone in the middle, someone you can speak to and say, errrr could you just explain that to me in a language that I understand and where can I find more information about the condition, as we all know Google isn't right all of the time. So although today has been another emotional day I have realised that the misunderstanding is my fault, I was so relieved to not have a macular hole that I didn't listen, but to back myself up it is so hard to concentrate once my eyes have been dilated because my ears just go off and do their own thing, listening to the light clicking, someone cleaning, a conversation down the corridor, my ears are tuned into anything other than what I am supposed to be listening too, in steps the pair of ears that are attached to an adult and supposed to listen on my behalf but those ears are too busy hoping that I am ok and not listening to the consultant either....I think I need to change the spare pair of ears I take with me in future!!
Tonight I am calmer and I have an appointment with my Optician on Monday morning and hopefully she will be able to help me understand it a bit more.
Next week I hope to have news about returning to work, I really would like to carry on for a few more years if I can, I miss the children and the people I work with. I miss that chatter, the banter and the feeling of belonging to a important group of people. I miss being me!
On a much brighter note...Guess who is off on another adventure to the Royal Albert Hall next Wednesday evening?? If Mum and I manage to get there and back without loosing my ticket or getting hopelessly lost I will 'eat my hat'
Have a good weekend everyone x
Today I am actually fed up with this not being able to see feck all crap, and the reason is, yesterday I received a letter from Moorfields concluding the findings of my appointment last Thursday.
If I quickly remind you that last September the hospital said they had found a hole in the Macular of my left eye and it was at full thickness. I spent the next three months in tatters and a blubbering mess at the thought of a very dark and fuzzy future. Then I was told on my next visit in November that, HEYYYY Nope, that was a mis-diagnosis and its just a massive floater which we can remove but it would be a really big risk, off you pop for another three months sitting at home doing feck all and wait to see if the floater moves on its own.
Don't get me wrong, without these guys and their teams, firstly I wouldn't have had so much fun, but secondly and more importantly they were there when I needed them most, they knew what needed to be done and they got on with it, I have trust and respect for them beyond words, BUT they their ability to translate what they are saying from their educated mouths to my uneducated ears is shocking. I came away understanding four words...no hole...big floater. I was happy. And when the letter came from the hospital giving their findings, I never even glanced at it and just filed it away with all the other Moorfields related bits of paper.
But yesterday a week after my third appointment in less than six months, the letter plops on my door mat.
But yesterday, was a sad day for our family and because we had all cried a lot, I had removed my contact lenses and was looking for a distraction. With my glasses on I can read better if I hold the paper close to my face, much better than I can with my contact lenses in, in truth I think its fair to say I cant read or retain any information with my contacts in.
So there I sit on the sofa, Ralph curled up one side of me knowing something is dreadfully wrong, a confused number two daughter sitting the other side of me with a million questions and expecting honest answers so when they both dosed off the Moorfields letter seemed a happy relief from the age old question...'what happens after someone dies Mum?'
Sitting there with the paper pressed to my nose I start reading, name, address, hospital number......bla bla bla, Diagnosis: High Myopia...yep I know that. Bilateral posterior vitreous detachment with Weiss rings...What the actual F**k, so I turn to good old Google, and from what I can make out after reading through loads of stuff, its to do with the jelly in the eye detaching and guess what, its has left something called a lamellar hole, which is certainly no-where near the scale of a Macular hole, but nether the less at no point was a hole, lamellar or not mentioned to me at the appointment, (or so I thought) there is also something called macular shisis...don't ask me, I have no bloody clue.The next thing on the list is..Myopic foveo-schisis-stable....which is the 'floater' and yes it certainly is stable, unlike my temper at the moment.
Then on the back of the letter there is a sentence dis charging me until any changes occur. It then lists the changes and categorises them into 'Emergency, go straight to Moorfields A&E' OR gradual deterioration, get referred back to the clinic. Charming!
I recon I must have read the letter over and over again at least ten times before I leapt up sending daughter, dog, box of tissues and a whole mountain of soggy tissues into the air as I charged off to locate the previous letters from the hospital only to find the Lamellar hole was indeed mentioned in the letter from November and I was whole heartily dismayed to realise the only part of the conversation I remember from the appointment in November are those bloody four words...no hole...big floater. Plonking myself back down on the sofa and thinking back hard to that appointment I slowly remembered some words about jelly in the eye and some other words that I don't understand. I really wish they would explain all these things a bit better, I feel so scared that there are words in that letter that I don't understand, I don't know what will happen next. I can see that a consultant is dealing with your condition not you, so they don't need to worry that you are terrified because as far as they are concerned they have discovered the diagnosis and make plans for treatment. The moment they close your file they are not concerned with how you will be getting home, or how you will manage at work or how you cope with the diagnosis they have given you, because, and quite rightly so, they have done their job.
So I have concluded that there needs to be someone in the middle, someone you can speak to and say, errrr could you just explain that to me in a language that I understand and where can I find more information about the condition, as we all know Google isn't right all of the time. So although today has been another emotional day I have realised that the misunderstanding is my fault, I was so relieved to not have a macular hole that I didn't listen, but to back myself up it is so hard to concentrate once my eyes have been dilated because my ears just go off and do their own thing, listening to the light clicking, someone cleaning, a conversation down the corridor, my ears are tuned into anything other than what I am supposed to be listening too, in steps the pair of ears that are attached to an adult and supposed to listen on my behalf but those ears are too busy hoping that I am ok and not listening to the consultant either....I think I need to change the spare pair of ears I take with me in future!!
Tonight I am calmer and I have an appointment with my Optician on Monday morning and hopefully she will be able to help me understand it a bit more.
Next week I hope to have news about returning to work, I really would like to carry on for a few more years if I can, I miss the children and the people I work with. I miss that chatter, the banter and the feeling of belonging to a important group of people. I miss being me!
On a much brighter note...Guess who is off on another adventure to the Royal Albert Hall next Wednesday evening?? If Mum and I manage to get there and back without loosing my ticket or getting hopelessly lost I will 'eat my hat'
Have a good weekend everyone x
Recon Ralph fancies a bit of baking!
Sunday, 4 March 2018
Snow
What was supposed to be a busy week last week got less busy with the arrival of the white stuff. Monday I met my new Doctor, and I am glad to say she is lovely and is one of those people who listens carefully to what you are saying giving you her full attention and then explodes into a torrent of solutions, within 10 minutes I felt like I was on the road to getting a few nagging problems sorted and had been promised the upmost support with getting back to work and moving on from this awful limbo I seem to be stuck in.
After seeing the Doctor I made my way into Hitchin to meet my friend for a swim. While I stood in the carpark waiting for her, my feet were freezing cold despite three pairs of socks, the biting cold wind was whipping around my neck making my back feel cold and achy, every-one who walked past was hunched against the weather, and then there's me, standing there with my swimming bag, shivering. As the minutes ticked past I went into a bit of a daze thinking about the quickest way of getting from the pool side to the changing rooms without turning blue, and then there is the whole drying my hair business, if I don't dry it I will definitely be suffering from hypothermia before I get home, and if I dry it at the pool I run the risk of my classic Italian genes turning my hair from a tame straightened style to a mass of frizz and wild curls.
As my friend turned into the carpark I had already decided we were fecking mad, and as she got out of her car, we stood looking at each other saying nothing for a few seconds, I just knew she had been thinking the same, so we chucked our swimming gear in the back of the car and went for coffee and cake.
The weather got colder and colder Tuesday and Wednesday, and the sky was trying desperately to drop snow on us.
Wednesday night, I quite literally sat on the edge of my bed praying that the snow wouldn't stop me from going to Moorfields on Thursday morning, I don't go for the religious stuff, but I did thank god when I woke up that Moorfields was open as usual and, even more astoundingly, the trains were running. Not only were they running, they were on time!!
It felt really strange that London had more snow than we did.
I am very proud to tell you that I DID NOT at any point miss-lay my train ticket, mind you, this is largely because my partner took them from me and kept them in his wallet until we needed them, the man just doesn't trust me!!
The hospital was almost empty, with people choosing to stay home in the warm. Nurse Tina was on duty and as I haven't seen her for years I was hoping she would be doing my checks, but another nurse called me in saying, she would be my nurse for today, as frankly, she was bored to death as all her patients had cancelled so she thought she would step in and help Tina, she carried on telling me how she would attend her appointment even if she had broken her leg, and then proceeded to balance her leg on the chair and slap her thigh. I couldn't get a word in edgeways as she chatted along, laughing to herself. This nurse, dare I say it, was even better than Tina. When she gave me a sight test, she was astounded that my sight was so cranky and went into a high pitched rant about people getting on with their lives no matter what god dished out to them. All the while she was chattering, she would bark in a few orders...Look up, Look down...Right, now take out your contact lenses.... I got on with removing them while listening and making noises of agreement, the right one came out without a problem, the left one just wouldn't come out. With the nurse standing at my elbow, I felt a little pressured and tried harder to remove it, then 'ping' out it came, bounced off my hand and disappeared. I said 'shit' and the nurse said 'holy mother of god, how the hell are we going to find that little bugger' She immediately springs into action and starts, totally inoffensively, 'patting' me down and muttering under her breath that we were never going to find the little bugger. As she lifted my arm to start patting me more, I felt a tiny bit of wet on my arm under my jumper sleeve, so I shouted 'WAIT' its up my arm...sure enough, there was the little bugger, clinging onto the hairs on my arms. Well, anyone would have thought that my nurse had won the lottery, she jumped back, slapped her hands to her chest and began doing this over exaggerated breathing thing which was hilarious. After I had safely deposited the little bugger into my little pot, she gave me a hug and said she hadn't been that afraid for years....how on earth would I manage without my contact lenses..ahhhh yess a question I ask myself nearly every day.
The next moment I was off for some scans and then sat waiting to see Dr Andrews, the lack of patients meant I didn't wait long and when the Dr saw me he came over for a chat then disappeared up the corridor, I saw a different consultant that I haven't seen before, but was working with Dr Andrews, he carefully went through my scans and agreed that the floater hadn't moved, we confirmed that the shape of the floater that he could see on my scan was the same as I see when I look. He also agreed that not having the operation to remove the floater was indeed the correct decision, and after a final check of my scan and shinning some bright lights into my eyes he declared me 'stable', well the eyes are anyway.
So, I am happy to say I was discharged on the condition that I attend A&E immediately if anything changes and they of course will see me.
The reverse journey home was a little less smooth as our Peterborough train was delayed by 20 mins, which in the end was only 10, but with a platform change from 7 to 5 sending a flow of freezing cold people running down the platform to the stairs. me included as I tried to, quite literally, blindly keep up with the flow, my partner, linked arms with me and ordered me to slow down just as my foot completely missed the first step and very nearly send us both flying down two sets of steps, so I slowed down. The rest of Thursday was spent asleep and Friday morning I woke up to a sky heavy with snow and my meeting at school cancelled. My contact at RNIB was attending the meeting with me, but he has to come from Norfolk and was already snowed in, the first few flurries started here just after lunch and by 4pm we were also covered in a blanket of white. The thing with all this was, daughter number one was driving in the snow storm and was frightened, so I chatted to her (hands free of course) back into our village, then I wrapped up warm, grabbed Ralph and his lead and stomped down to meet her at her last dog walk of the day. I was concentrating on where I was going I didn't really notice how fast and thick the snow was falling until we were in the field and although I know its something I shouldn't do, I am so glad I did, it was beautiful and I didn't care if it hurt my eyes or gave me head ache, balls to snow blindness, this was well worth it. Ralph absolutely loved it, and spent a lot of time running out of my sight, which probably wasn't actually very far, and then running back and launching himself at me. After half an hour, my Daughters dog walk had finished and much to Ralphs disgust we left to walk back to drop the dog off and get her car. My village only has one road through it, and this was jammed with cars going no-where, so we abandoned the car and walked home. By the time we got home Ralph had ice stuck to his chin and the hair over his eyes, but was also sporting this stupid grin, which said, THANKS MUM THAT WAS BRILL. X
After seeing the Doctor I made my way into Hitchin to meet my friend for a swim. While I stood in the carpark waiting for her, my feet were freezing cold despite three pairs of socks, the biting cold wind was whipping around my neck making my back feel cold and achy, every-one who walked past was hunched against the weather, and then there's me, standing there with my swimming bag, shivering. As the minutes ticked past I went into a bit of a daze thinking about the quickest way of getting from the pool side to the changing rooms without turning blue, and then there is the whole drying my hair business, if I don't dry it I will definitely be suffering from hypothermia before I get home, and if I dry it at the pool I run the risk of my classic Italian genes turning my hair from a tame straightened style to a mass of frizz and wild curls.
As my friend turned into the carpark I had already decided we were fecking mad, and as she got out of her car, we stood looking at each other saying nothing for a few seconds, I just knew she had been thinking the same, so we chucked our swimming gear in the back of the car and went for coffee and cake.
The weather got colder and colder Tuesday and Wednesday, and the sky was trying desperately to drop snow on us.
Wednesday night, I quite literally sat on the edge of my bed praying that the snow wouldn't stop me from going to Moorfields on Thursday morning, I don't go for the religious stuff, but I did thank god when I woke up that Moorfields was open as usual and, even more astoundingly, the trains were running. Not only were they running, they were on time!!
It felt really strange that London had more snow than we did.
I am very proud to tell you that I DID NOT at any point miss-lay my train ticket, mind you, this is largely because my partner took them from me and kept them in his wallet until we needed them, the man just doesn't trust me!!
The hospital was almost empty, with people choosing to stay home in the warm. Nurse Tina was on duty and as I haven't seen her for years I was hoping she would be doing my checks, but another nurse called me in saying, she would be my nurse for today, as frankly, she was bored to death as all her patients had cancelled so she thought she would step in and help Tina, she carried on telling me how she would attend her appointment even if she had broken her leg, and then proceeded to balance her leg on the chair and slap her thigh. I couldn't get a word in edgeways as she chatted along, laughing to herself. This nurse, dare I say it, was even better than Tina. When she gave me a sight test, she was astounded that my sight was so cranky and went into a high pitched rant about people getting on with their lives no matter what god dished out to them. All the while she was chattering, she would bark in a few orders...Look up, Look down...Right, now take out your contact lenses.... I got on with removing them while listening and making noises of agreement, the right one came out without a problem, the left one just wouldn't come out. With the nurse standing at my elbow, I felt a little pressured and tried harder to remove it, then 'ping' out it came, bounced off my hand and disappeared. I said 'shit' and the nurse said 'holy mother of god, how the hell are we going to find that little bugger' She immediately springs into action and starts, totally inoffensively, 'patting' me down and muttering under her breath that we were never going to find the little bugger. As she lifted my arm to start patting me more, I felt a tiny bit of wet on my arm under my jumper sleeve, so I shouted 'WAIT' its up my arm...sure enough, there was the little bugger, clinging onto the hairs on my arms. Well, anyone would have thought that my nurse had won the lottery, she jumped back, slapped her hands to her chest and began doing this over exaggerated breathing thing which was hilarious. After I had safely deposited the little bugger into my little pot, she gave me a hug and said she hadn't been that afraid for years....how on earth would I manage without my contact lenses..ahhhh yess a question I ask myself nearly every day.
The next moment I was off for some scans and then sat waiting to see Dr Andrews, the lack of patients meant I didn't wait long and when the Dr saw me he came over for a chat then disappeared up the corridor, I saw a different consultant that I haven't seen before, but was working with Dr Andrews, he carefully went through my scans and agreed that the floater hadn't moved, we confirmed that the shape of the floater that he could see on my scan was the same as I see when I look. He also agreed that not having the operation to remove the floater was indeed the correct decision, and after a final check of my scan and shinning some bright lights into my eyes he declared me 'stable', well the eyes are anyway.
So, I am happy to say I was discharged on the condition that I attend A&E immediately if anything changes and they of course will see me.
The reverse journey home was a little less smooth as our Peterborough train was delayed by 20 mins, which in the end was only 10, but with a platform change from 7 to 5 sending a flow of freezing cold people running down the platform to the stairs. me included as I tried to, quite literally, blindly keep up with the flow, my partner, linked arms with me and ordered me to slow down just as my foot completely missed the first step and very nearly send us both flying down two sets of steps, so I slowed down. The rest of Thursday was spent asleep and Friday morning I woke up to a sky heavy with snow and my meeting at school cancelled. My contact at RNIB was attending the meeting with me, but he has to come from Norfolk and was already snowed in, the first few flurries started here just after lunch and by 4pm we were also covered in a blanket of white. The thing with all this was, daughter number one was driving in the snow storm and was frightened, so I chatted to her (hands free of course) back into our village, then I wrapped up warm, grabbed Ralph and his lead and stomped down to meet her at her last dog walk of the day. I was concentrating on where I was going I didn't really notice how fast and thick the snow was falling until we were in the field and although I know its something I shouldn't do, I am so glad I did, it was beautiful and I didn't care if it hurt my eyes or gave me head ache, balls to snow blindness, this was well worth it. Ralph absolutely loved it, and spent a lot of time running out of my sight, which probably wasn't actually very far, and then running back and launching himself at me. After half an hour, my Daughters dog walk had finished and much to Ralphs disgust we left to walk back to drop the dog off and get her car. My village only has one road through it, and this was jammed with cars going no-where, so we abandoned the car and walked home. By the time we got home Ralph had ice stuck to his chin and the hair over his eyes, but was also sporting this stupid grin, which said, THANKS MUM THAT WAS BRILL. X
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