Afternoon everyone....
Well this is blog number 100, I wanted to do something special, but I couldn't decide what was special, so I will talk to you all about the small, big word!!
The other day I was asked if I found the word 'blind' offensive. It took me a few minutes to decide, I wanted to say Nooooo of course not, but being blind is such a big thing and the word blind is so small and means something that, very often, it isn't, so I said I preferred 'sight loss'.
I mean, if someone is described as being blind, it is assumed that they cant see anything, literally living in a world of black. But no one sees the same, and although a certain sight loss disease is given a name, no two people experience the exactly the same strains and degrees of that disease at the same time.
So to use the word Blind to me is white washing over something that is very personal, complex and individual.
It is also a old word, I know that might sound funny and strange, but when someone says they have a friend who is blind, you automatically think of that person as being 'old' but if you say you have a friend who has sight loss, it seems to open the doors a little and widen peoples expectations of what someone who has sight loss might...see!
Over the years there have been many words used to describe peoples disabilities that have not been the most pleasant, these words as time goes by are recognised as words that are offensive and so society naturally replaces these words with something that is more specific, less insulting and dare I say it, politically correct. The word blind, however, sticks. I find it a glum word, a word that suggests that a regular life is doomed, if you are blind you cannot do anything, so you might as well sit in a chair and forget all about any future.
Sight loss gives you hope, I have been registered as having...severe sight loss(blind), yet I certainly do not consider myself as being blind, especially when I am in my usual routine, take me out of my familiar zone and routine, and ok, I admit things change, I know I find life harder then, and I know I struggle but I still wouldn't say I am blind.
On Thursday this week I met a incredible group of people, I went to meet some other RNIB Connect volunteers. I took the train (on my own) to Peterborough and met the others at the station, some of these people had travelled miles, but the staff at the station were so helpful, I was very impressed.
Anyway, I sat in a conference room at the RNIB office absorbing all this incredible energy from these folks who all had varying degrees of sight loss.
One gentleman is the pinnacle of knowledge, I could ask him anything and he would be able to help, and if he couldn't he would set to work to find the information I needed, his guide dog is as confident as he is, if every I met a man who deserves recognition for his devotion and passion for supporting the RNIB it has to be this guy.
I sat opposite another gentleman who used a white cane to mauve himself around, I wished I had more time to talk to him, and learn more about his life. A intelligent and gently spoken man and very confident in his surroundings.
Beside me was a smartly dressed older lady, who also had a fascinating life history to tell, she enjoyed telling me about how active she is within her local community and how she doesn't let her sight loss hold her back, there was also a much younger lady, whose enthusiasm and energy lifted the room, a lady who instead for grieving for the life she used to have, has put all her knowledge and experience into supporting the Connect team with fresh, positive and determined ideas. I was totally humbled to have met all the people in the room and can only hope for half of their wisdom and determination to not let their sight loss rule the way they live, the places they go and the people they meet. Not one of these people seemed bitter about the changes in their lives that sight loss brings, Positive attitudes breads positivity I say!
The RNIB building itself was buzzing with life, but every single member of staff, no matter how busy they were, took the time to acknowledge us. Mind you, if there was ever a place that a group of people who are sight impaired could meet together and fit in, you'd think it would be the RNIB offices, so no wonder we felt so at home.
So back to the original question, No, I don't find the word Blind offensive, I find it dated, and not a big enough word to describe the vastness of losing your sight and definitely not a big enough word to describe the inspirational, remarkable and just down right sassy people that it labels.
I learnt a lot that day, and I don't mean just through the paperwork, I am grateful for the experience, and was just a little proud of being recognised by one man as...the lady that blogs!!
Speak soon x
Saturday, 22 April 2017
Monday, 17 April 2017
My sight loss label
Hi Everyone,
As I promised, the next blog would be more about the conditions that I have.
As you know I have been short sighted nearly all my life, I managed with milk bottle bottom glasses from the age of about 4 right up until I was about 13 years old, then I was introduced to contact lenses.
I had and still have gas permeable, hard lenses. They are truly my life line, without the vision that these tiny pieces of plastic give me I wouldn't be able to manage day to day things, in fact it makes me feel rather claustrophobic to think about how the world around me would shrink and darken. Soft lenses, although they are much more popular these days, don't give me anywhere near the vision the hard lenses do.
I wear my contact lenses all day every day, my glasses are a very well made pair of Rodenstock frames with some incredibly engineered plastic lenses, they are now 20 years old, the dog, when he was a puppy, chewed one of the arms and they are now looking rather well used. I always find it amusing when I take them with me for sight tests, the ophthalmologists practically wet themselves with wonder at the quality of them. Twenty years ago they cost me £500, so its no surprise that a couple of years ago when the hospital said they thought that I should try and wear glasses more often during the day and give my eyes a rest from contact lenses.
Specsavers made me a new pair of glasses, which certainly were not to the standard of my old ones, but the prescription had changed so a new pair was manufactured at the grand old price of £700!
I tried my hardest to wear them for over a week, but something in my brain just wouldn't accept them and my sight just wouldn't settle down, making me dizzy, disorientated and they gave me terrible head aches.
So I took them back, the ophthalmologist looking after me said she thought that might happen and gave me my money back, saying something about my brain not being able to adjust to the new vision from the new glasses.
I was much happier with my contact lenses back in and my old glasses for emergencies and the rare occasion that I am in unfamiliar surroundings.
August bank holiday weekend 2011, everything changed and I ended up at Moorfields A&E, and for the following few weeks I returned to the hospital every couple of days for tests, and the results were...a massive deterioration in vision of the right eye, stippled hyperflourescence and subretinal fluid.
I didn't really understand what all this meant at the time, only that I would be starting a course of Avastin injections immediately, luckily, in the end they sent us home to give us time for all the information to sink in and think about the risks of the injections, the risks of not having the injections out weight the risks of having them, so we returned three weeks later for my first injection.
Now, six years down the road, I realise just how little information was actually given to me, maybe I didn't want to understand, but I sure wish I had asked more questions, and tried to understand better. I know that the injections were to stop the leakage, this was going really well and I had six injections before I had a haemorrhage, and then the injections stopped as it was no longer safe for me to have them.
So July 2012 I was registered as severely sight impaired (blind) and was given some leaflets and packed off home.
It seems I have a label of some thing called...
Myopic Choroidal Neovascularization, MCN for short, which is a condition that occurs in people who are short sighted, the retina becomes very thin and stretched due to the increased size of the eye. Blood vessels from the Choroid, the layer of eye behind the retina, start to grow into the retinal space, the blood vessels leak blood and fluid and cause severe permanent sight loss.
MCN looks something like this...
Nice! So the injections stopped the blood and fluid leaking, but not before some damage and permanent sight loss had occurred.
Then, Age-related Macular Degeneration...usually occurring in people over 50 years old, but I was 38! anyway, it means that the Macula is damaged and I cant see things clearly close up or far away, this only affects central vision, but explains why I don't see peoples faces, and I tend to recognise people by their body shape.
Then added to all that loveliness, I developed big fat permanent floaters that distort the vision I have.
My right eye has no colour, I mean to say I see no colour, If I cover my left eye, I see everything in grey, sometimes a bight colour will stand out, but I have very little vision out of that eye.
So all the above conditions are in my right eye, and in my left I have short sightedness as well as age-related Macula Degeneration and permanent floaters, although they aren't as big as the ones in my right eye.
Sometimes I find myself wondering if it would be easier if I looked like I had sight problems, my right eye is smaller than my left, and shows more when I am tired, but overall I look sort of mainstream!
The conditions that I have in my eyes are life changing but not life threatening, so I don't think about them, I don't like people asking me about them, I still struggle with where I am, emotionally, with all this. Some mornings, when I wake up, I lay there with my eyes closed praying that when I open them I will be able to see clearly, but its never going to happen, so I get on with life the best I can.
The hardest thing for me will always be asking for help, I hate admitting that there is something I cant do.
There is so much more than just having sight problems, and it is often all the stuff that comes with it that gets people down, and its a long hard journey of acceptance and willingness to ask for help, support and understanding.
I now see that there are so many very large gaps in support for people with sight loss, and I think its partly because the world is ill educated on disability, I mean when was the last time someone stopped you in the street and asked you if you about your condition? What happens if someone sees a person in a wheelchair, they avoid them.
My daughter and I were in Stevenage a few weeks ago, and while we were standing in a shop waiting for our photographs to be printed, this guy, who was visually impaired and his guide dog joined the queue, well he sort of joined it, you could tell he was uncomfortable so he sort of edged his way in, my daughter and I were at the front of the queue, the next minute I could hear all this fuss and feel my daughter tense up beside me, so this woman who was standing in front of the guide dog turned and reached down and started to give the dog a big fuss, the dog for all its training, was overwhelmed and lurched forward for more fuss from this woman, despite the fact that the dog has a bloody great sign saying not to do that one thing, she was in love a dog mode. The dogs lurching pulls the pour guy forward and very nearly sends him flying, instead of saying, please do not touch the dog, he was clearly upset and didn't want to upset her so he just asked if she wouldn't mind telling him when she was going to fuss the dog. My daughter by now was furious, and I was also shocked at the complete disregard for this guy or his dog, she didn't give two hoots that the guy was blind or that the dog was working. She wanted to fuss the dog and that was what she was going to do. She then bombarded him with a thousand questions about the dog, but the man was still trying to regain his composure after being nearly pulled over as well as thinking about what he had come into the shop to do.
By now my daughter had started to mumble things under her breath about the woman that were not too polite, and I have to say I agreed with her, I totally wish I had the balls to say something to the woman but I needed to get my daughter out of the shop before she grabbed hold of the woman and pushed her over to see how she liked it, this is just a flimsy example of how people ignore what is in front of them, for what reason? who knows? Embarrassment? Ill education? Ignorance? Selfishness?....I don't know, I will leave it to you to decide.
Speak soon xx
As I promised, the next blog would be more about the conditions that I have.
As you know I have been short sighted nearly all my life, I managed with milk bottle bottom glasses from the age of about 4 right up until I was about 13 years old, then I was introduced to contact lenses.
I had and still have gas permeable, hard lenses. They are truly my life line, without the vision that these tiny pieces of plastic give me I wouldn't be able to manage day to day things, in fact it makes me feel rather claustrophobic to think about how the world around me would shrink and darken. Soft lenses, although they are much more popular these days, don't give me anywhere near the vision the hard lenses do.
I wear my contact lenses all day every day, my glasses are a very well made pair of Rodenstock frames with some incredibly engineered plastic lenses, they are now 20 years old, the dog, when he was a puppy, chewed one of the arms and they are now looking rather well used. I always find it amusing when I take them with me for sight tests, the ophthalmologists practically wet themselves with wonder at the quality of them. Twenty years ago they cost me £500, so its no surprise that a couple of years ago when the hospital said they thought that I should try and wear glasses more often during the day and give my eyes a rest from contact lenses.
Specsavers made me a new pair of glasses, which certainly were not to the standard of my old ones, but the prescription had changed so a new pair was manufactured at the grand old price of £700!
I tried my hardest to wear them for over a week, but something in my brain just wouldn't accept them and my sight just wouldn't settle down, making me dizzy, disorientated and they gave me terrible head aches.
So I took them back, the ophthalmologist looking after me said she thought that might happen and gave me my money back, saying something about my brain not being able to adjust to the new vision from the new glasses.
I was much happier with my contact lenses back in and my old glasses for emergencies and the rare occasion that I am in unfamiliar surroundings.
August bank holiday weekend 2011, everything changed and I ended up at Moorfields A&E, and for the following few weeks I returned to the hospital every couple of days for tests, and the results were...a massive deterioration in vision of the right eye, stippled hyperflourescence and subretinal fluid.
I didn't really understand what all this meant at the time, only that I would be starting a course of Avastin injections immediately, luckily, in the end they sent us home to give us time for all the information to sink in and think about the risks of the injections, the risks of not having the injections out weight the risks of having them, so we returned three weeks later for my first injection.
Now, six years down the road, I realise just how little information was actually given to me, maybe I didn't want to understand, but I sure wish I had asked more questions, and tried to understand better. I know that the injections were to stop the leakage, this was going really well and I had six injections before I had a haemorrhage, and then the injections stopped as it was no longer safe for me to have them.
So July 2012 I was registered as severely sight impaired (blind) and was given some leaflets and packed off home.
It seems I have a label of some thing called...
Myopic Choroidal Neovascularization, MCN for short, which is a condition that occurs in people who are short sighted, the retina becomes very thin and stretched due to the increased size of the eye. Blood vessels from the Choroid, the layer of eye behind the retina, start to grow into the retinal space, the blood vessels leak blood and fluid and cause severe permanent sight loss.
MCN looks something like this...
Nice! So the injections stopped the blood and fluid leaking, but not before some damage and permanent sight loss had occurred.
Then, Age-related Macular Degeneration...usually occurring in people over 50 years old, but I was 38! anyway, it means that the Macula is damaged and I cant see things clearly close up or far away, this only affects central vision, but explains why I don't see peoples faces, and I tend to recognise people by their body shape.
Then added to all that loveliness, I developed big fat permanent floaters that distort the vision I have.
My right eye has no colour, I mean to say I see no colour, If I cover my left eye, I see everything in grey, sometimes a bight colour will stand out, but I have very little vision out of that eye.
So all the above conditions are in my right eye, and in my left I have short sightedness as well as age-related Macula Degeneration and permanent floaters, although they aren't as big as the ones in my right eye.
Sometimes I find myself wondering if it would be easier if I looked like I had sight problems, my right eye is smaller than my left, and shows more when I am tired, but overall I look sort of mainstream!
The conditions that I have in my eyes are life changing but not life threatening, so I don't think about them, I don't like people asking me about them, I still struggle with where I am, emotionally, with all this. Some mornings, when I wake up, I lay there with my eyes closed praying that when I open them I will be able to see clearly, but its never going to happen, so I get on with life the best I can.
The hardest thing for me will always be asking for help, I hate admitting that there is something I cant do.
There is so much more than just having sight problems, and it is often all the stuff that comes with it that gets people down, and its a long hard journey of acceptance and willingness to ask for help, support and understanding.
I now see that there are so many very large gaps in support for people with sight loss, and I think its partly because the world is ill educated on disability, I mean when was the last time someone stopped you in the street and asked you if you about your condition? What happens if someone sees a person in a wheelchair, they avoid them.
My daughter and I were in Stevenage a few weeks ago, and while we were standing in a shop waiting for our photographs to be printed, this guy, who was visually impaired and his guide dog joined the queue, well he sort of joined it, you could tell he was uncomfortable so he sort of edged his way in, my daughter and I were at the front of the queue, the next minute I could hear all this fuss and feel my daughter tense up beside me, so this woman who was standing in front of the guide dog turned and reached down and started to give the dog a big fuss, the dog for all its training, was overwhelmed and lurched forward for more fuss from this woman, despite the fact that the dog has a bloody great sign saying not to do that one thing, she was in love a dog mode. The dogs lurching pulls the pour guy forward and very nearly sends him flying, instead of saying, please do not touch the dog, he was clearly upset and didn't want to upset her so he just asked if she wouldn't mind telling him when she was going to fuss the dog. My daughter by now was furious, and I was also shocked at the complete disregard for this guy or his dog, she didn't give two hoots that the guy was blind or that the dog was working. She wanted to fuss the dog and that was what she was going to do. She then bombarded him with a thousand questions about the dog, but the man was still trying to regain his composure after being nearly pulled over as well as thinking about what he had come into the shop to do.
By now my daughter had started to mumble things under her breath about the woman that were not too polite, and I have to say I agreed with her, I totally wish I had the balls to say something to the woman but I needed to get my daughter out of the shop before she grabbed hold of the woman and pushed her over to see how she liked it, this is just a flimsy example of how people ignore what is in front of them, for what reason? who knows? Embarrassment? Ill education? Ignorance? Selfishness?....I don't know, I will leave it to you to decide.
Speak soon xx
Saturday, 15 April 2017
All about me No 2
Hello Everyone,
I thought I might give the 'All about me' another try.
So, this is me....
I thought I might give the 'All about me' another try.
So, this is me....
Yuk, ghastly picture, I hate having my photo taken and don't know what I really look like, I mean I know where everything is on my face, and I know my eyes are blue but I don't see my face from a distance, I mean, I need to get so close to a mirror to put some lippy on that then I only see my lips.
Photos are hard to see too, usually a photo is too small and then if you enlarge it the photo becomes pixilated and so it then looks distorted, you just cant win!!
Sometimes it makes me sad that I don't really know what I look like, but then on the other hand, maybe its just as well!!
I have been short sighted from a very early age, I am sure I had my first pair of glasses at about four years old, then one morning everything changed from not being able to see very well to, not being able to see bugger all!! and so, I had to learn to live a entirely different life.
I would like to say I am a very lovely human, but I know I can be proper cranky at times!
I live here in a little village in the East of England with my two teenage Daughters and our dog Ralph.
My Mum was born in Hastings, England and my Dad was born in Pescara, Italy, my Dad passed away 20 years ago and the very young age of 49 to a heart attack, there hasn't been a day go past since when he doesn't crossed my mind.
My Mum, who lives a mile away, has been the rock that got me through all the hospital appointments and treatments since the day my sight changed.
I think its safe to say, and I know most people will say the same, life has been an emotional rollercoaster,
I work part-time at a special needs school, I have worked here for about 14 years, and loved it, I loved working with the children and have made some fantastic friends from the people I have worked with over the years.
Now I work only three days I have taken up a voluntary role with RNIB Connect as a community connector, this has changed my outlook on life completely and has encouraged a passion within me that I didn't know existed.
On a bit of a more personal level, I miss cycling, I used to cycle everywhere and did the London to Cambridge bike ride some years ago, I loved the cycle back and forth to work everyday, If someone asked me what I missed the most, it would definitely be my bike!
I really enjoy being outside and Ralph and I do a lot of walking, at the moment we stick to familiar routes but I am feeling the need to explore.
I like to garden, I only have a small garden but I like it to look nice, I enjoy looking for plants that are different and have a bit of a obsession with the bargain bench at our local garden centre, in fact my whole front garden came from the bargain bench! I also absolutely LOVE beating my neighbour at mowing the lawn! Gotta love a bit of competition!
I like to see things, I am hell bent on filling my memory with visions of places I have been and sights I have seen. I enjoy a old church or stately homes but equally enjoy a new building and modern architecture. I love the countryside and crave the sights, sounds and smells of the sea.
I hate lots of people, I try to avoid places when they are really busy, I have learnt many valuable lessons over the last few years, I have also learnt to see with my ears and use parts of my brain that were covered in cobwebs....
Well, I hope this has been a more informative insight into 'All about me'
I realise that I haven't told you very much about my sight loss as a condition, and thought that it would make this blog too long if I did it now, so the next blog will be more on 'me, with my condition.
Speak soon xx
Disruptive adults
Hi Everyone,
Well, here we go again, I just spent a hour trying to write the 'All about me', and I still cant get it right, I think its because I find it hard to stay on track, and keep it focused on me, I am writing and then something jogs my memory and I go off telling you a story.
Perhaps I should try writing it in stages!
This week has been awful, you know its the holidays when you get ill!
I have been so short tempered all week and every time I took Ralph out for his walk I would need a nap when I got back then didn't have the energy to do anything for the rest of the day.
As the week wore on I acquired a delightful hacking cough and a dull ache in my kidneys, I found I really had to push myself to even walk Ralph around the garden let alone our usual trek across the fields. yesterday I felt like someone was standing on my chest so I took myself to the doctors where it was decided that I have a chest infection and a urine infection, so I am now popping antibiotics for the next seven days.
As I have been sitting about a lot, I checked out a couple of other bloggers who write about sight loss and their personal journeys, and I am now feeling very inadequate, some of the writing others have written is outstanding and really interesting. I am feeling ashamed at feeling proud of myself!
I have definitely been knocked down a peg or two, and my confidence is shot! I have a lot of admiration
for these bloggers and wish I could produce writing to their standard.
But then I suppose it comes down to the same old thing, our natural insecurities and willingness to compare ourselves to others at every opportunity.
Even so I have been, once again, considering calling time on Diary of a blind lady, life just seems so muddled at the moment.
Mixed in with all this rubbish going around in my head, we had a unfortunate incident on Monday night at 1am involving three, errr, disruptive adults, shall we call them, who are living near us. They were clearly under the influence, and this led to a lot of screaming, fighting and smashing things up, they calmed down at about 2am, there was the sound of squealing tyres and then silence.
But, then I couldn't sleep, my contact lenses were in the solution for the night so I only had my glasses to help me see.
All the while the fighting had been going on I hadn't dared to turn on the bedroom light, I sleep with my curtains and bedroom window open as I love to feel the cool air through the window and there is nothing more special than your room being illuminated by the moon, and the moon, this week, has been spectacular.
This is the down side to living without another adult in the house, suddenly I am responsible for the safety of my girls, and I didn't feel safe, if I yelled out of the window at them I would be offering myself and my family up for all sorts of abuse, if I went outside to try and talk to them it would be very likely that I would end up with a punch on the nose, so I laid in my bed willing them to sod off.
I must have dosed off at about 3.30am, but was woken at 4am by someone hammering on my front door, Ralph was going ballistic down stairs in his bed. I gabbed my glasses and pressed them close against my eyes, I pushed my face up against my daughters bedroom window at the front of the house, I could see two figures dressed in black standing at my front door, with the street lights behind them and the fact that I couldn't see them, I had no change of seeing who they were.....Do I answer the door? I don't mind telling you that I was scared, what happens if I open the door and there's a couple of druggies standing on my mat wanting to have a go at me for watching them through the bedroom window while they were beating the crap out of each other and trashing the area around them, even though I couldn't see them!
I was frozen to the spot, starting to sweat and feel sick, what should I do? I pushed my face against the window again and they started to walk away, I sprang away from the window like it had burnt me, terrified they might look up at the window and see me. They walked around the side of the houses, so I ran back to my room and did the whole squidging my face against the window again, the two black shadows walked under another street light and got into a police car....balls, they were coppers!
I knew there was no way I was going to reach them safely before they drove away, so I stood there in the middle of the bedroom and listened to their car pull away, I sat on the bed and then started to panic, What if their visit wasn't related to the disruptive adults? What if someone in my family had been in a accident? and I had ignored the door, what the hell should I do?
I was frightened again so I laid back on the bed expecting the phone to ring, but I was to unsettled to fall back to sleep until the sun started to rise at about 6am.
I had been asleep an hour when the police came back, their visit was related to the stupid drugged-up idiots, they wanted to know what I had seen........nothing...I saw NOTHING!! But now you are at my front door, the idiots will think I saw something. For two days after the police visit, I have been on high alert, checking doors and the back gate are locked, shutting all the curtains in the house as soon as it gets dark.
How do people manage who are blind and living on their own, how completely disorientating, distressing and frightening would that be to have such disruption outside their homes let alone someone hammering on your front door at a ridiculous time of the morning.
My faith in human nature has slipped, I worry for all those people on their own, as it happened, it was my neighbour who called the police, but for some reason they knocked on my door instead of hers.
I would like to hope this kind of thing doesn't happen much but I think that would be naïve of me, it upsets me a lot, and then I get cross, how dare someone make a person feel unsafe in their own home, with or without a disability your home is somewhere that you should feel safe.
What troubles me the most is there is nothing we can do to stop this from happening, I am assured that the council will move these people on, but where too?
and now I am worrying about who will be put in their place!
I know right now I am feeling unwell, grumpy, old, fed up and my self esteem has gone on holiday...but tomorrow is Easter Sunday...and you get to Eat loads of chocolate....Monday I will pull myself together, put last week down as a loss and move on, if I let all these things get me down, the crappy situations are winning, crappy situations will not get me down, besides I have a very important meeting next week and the passport office has said my renewed passport is on its way back, so its time to start thinking about holidays!...you never know, I might find my self esteem.
Have a lovely Easter everyone, I am off to the garden centre to look for flowers for the garden.
Speak Soon xx
Well, here we go again, I just spent a hour trying to write the 'All about me', and I still cant get it right, I think its because I find it hard to stay on track, and keep it focused on me, I am writing and then something jogs my memory and I go off telling you a story.
Perhaps I should try writing it in stages!
This week has been awful, you know its the holidays when you get ill!
I have been so short tempered all week and every time I took Ralph out for his walk I would need a nap when I got back then didn't have the energy to do anything for the rest of the day.
As the week wore on I acquired a delightful hacking cough and a dull ache in my kidneys, I found I really had to push myself to even walk Ralph around the garden let alone our usual trek across the fields. yesterday I felt like someone was standing on my chest so I took myself to the doctors where it was decided that I have a chest infection and a urine infection, so I am now popping antibiotics for the next seven days.
As I have been sitting about a lot, I checked out a couple of other bloggers who write about sight loss and their personal journeys, and I am now feeling very inadequate, some of the writing others have written is outstanding and really interesting. I am feeling ashamed at feeling proud of myself!
I have definitely been knocked down a peg or two, and my confidence is shot! I have a lot of admiration
for these bloggers and wish I could produce writing to their standard.
But then I suppose it comes down to the same old thing, our natural insecurities and willingness to compare ourselves to others at every opportunity.
Even so I have been, once again, considering calling time on Diary of a blind lady, life just seems so muddled at the moment.
Mixed in with all this rubbish going around in my head, we had a unfortunate incident on Monday night at 1am involving three, errr, disruptive adults, shall we call them, who are living near us. They were clearly under the influence, and this led to a lot of screaming, fighting and smashing things up, they calmed down at about 2am, there was the sound of squealing tyres and then silence.
But, then I couldn't sleep, my contact lenses were in the solution for the night so I only had my glasses to help me see.
All the while the fighting had been going on I hadn't dared to turn on the bedroom light, I sleep with my curtains and bedroom window open as I love to feel the cool air through the window and there is nothing more special than your room being illuminated by the moon, and the moon, this week, has been spectacular.
This is the down side to living without another adult in the house, suddenly I am responsible for the safety of my girls, and I didn't feel safe, if I yelled out of the window at them I would be offering myself and my family up for all sorts of abuse, if I went outside to try and talk to them it would be very likely that I would end up with a punch on the nose, so I laid in my bed willing them to sod off.
I must have dosed off at about 3.30am, but was woken at 4am by someone hammering on my front door, Ralph was going ballistic down stairs in his bed. I gabbed my glasses and pressed them close against my eyes, I pushed my face up against my daughters bedroom window at the front of the house, I could see two figures dressed in black standing at my front door, with the street lights behind them and the fact that I couldn't see them, I had no change of seeing who they were.....Do I answer the door? I don't mind telling you that I was scared, what happens if I open the door and there's a couple of druggies standing on my mat wanting to have a go at me for watching them through the bedroom window while they were beating the crap out of each other and trashing the area around them, even though I couldn't see them!
I was frozen to the spot, starting to sweat and feel sick, what should I do? I pushed my face against the window again and they started to walk away, I sprang away from the window like it had burnt me, terrified they might look up at the window and see me. They walked around the side of the houses, so I ran back to my room and did the whole squidging my face against the window again, the two black shadows walked under another street light and got into a police car....balls, they were coppers!
I knew there was no way I was going to reach them safely before they drove away, so I stood there in the middle of the bedroom and listened to their car pull away, I sat on the bed and then started to panic, What if their visit wasn't related to the disruptive adults? What if someone in my family had been in a accident? and I had ignored the door, what the hell should I do?
I was frightened again so I laid back on the bed expecting the phone to ring, but I was to unsettled to fall back to sleep until the sun started to rise at about 6am.
I had been asleep an hour when the police came back, their visit was related to the stupid drugged-up idiots, they wanted to know what I had seen........nothing...I saw NOTHING!! But now you are at my front door, the idiots will think I saw something. For two days after the police visit, I have been on high alert, checking doors and the back gate are locked, shutting all the curtains in the house as soon as it gets dark.
How do people manage who are blind and living on their own, how completely disorientating, distressing and frightening would that be to have such disruption outside their homes let alone someone hammering on your front door at a ridiculous time of the morning.
My faith in human nature has slipped, I worry for all those people on their own, as it happened, it was my neighbour who called the police, but for some reason they knocked on my door instead of hers.
I would like to hope this kind of thing doesn't happen much but I think that would be naïve of me, it upsets me a lot, and then I get cross, how dare someone make a person feel unsafe in their own home, with or without a disability your home is somewhere that you should feel safe.
What troubles me the most is there is nothing we can do to stop this from happening, I am assured that the council will move these people on, but where too?
and now I am worrying about who will be put in their place!
I know right now I am feeling unwell, grumpy, old, fed up and my self esteem has gone on holiday...but tomorrow is Easter Sunday...and you get to Eat loads of chocolate....Monday I will pull myself together, put last week down as a loss and move on, if I let all these things get me down, the crappy situations are winning, crappy situations will not get me down, besides I have a very important meeting next week and the passport office has said my renewed passport is on its way back, so its time to start thinking about holidays!...you never know, I might find my self esteem.
Have a lovely Easter everyone, I am off to the garden centre to look for flowers for the garden.
Speak Soon xx
Sunday, 9 April 2017
which Loo do you use?
Hello Everyone,
Still no sign of the 'All about me' Blog I am afraid, I know I should sit and make a real effort to write it but it will come when its ready.
Tonight I thought I would try the disabled swim at my local swimming pool, my youngest daughter was coming in with me as my carer, my eldest and my other half were going to watch, its only on once a week for a hour, but you know, the one night I decide to give it ago is the one night it isn't on because there was a swimathon, dam it!
Never mind, I will try it again next week, I did go for a swim mid week with my mate but it was a bit too busy for me as most schools had broken up for the Easter hols, so parents had brought their little darlings along to the pool to kill some time, Mums sat with their faces in their phones while their offspring splashed, screamed and dived bombed off the side as if they had eaten 27 chocolate bars for breakfast.
Don't get me wrong, I most certainly do not begrudge anyone having fun and they do have lane swimming for people who just want to plough up and down but I am not a strong enough swimmer to do the lanes, I like to stay near the edge, I also cant see other people swimming towards me so I don't have a very good awareness of others around me, when I can hear lots of noise it distracts me from my immediate surrounding, added to that, the screaming and the splashing echo's around the pool and I have no idea if the people splashing are near me or on the other side of the pool. All in all, I just panic! So that's why I like to stay near the edge, I know there is something other than very deep water near me if I feel Panic, one of the first rules of a panic attack is to find something solid to push your back against and thats is kinda hard to do when you are surrounded by liquid, I can be out of the water quickly if I need to.
I always feel people watching me when I walk in with my cane, I always take my towel and use it to balance my cane on when I leave it against the wall so that it doesn't slide down and get in some ones way or I wont be able to see it and panic that some one has pinched it....I know what you're thinking...WHY would some one want to pinch your cane? But you never know!
Anyway, like I say, I always attract curious glances, people act differently, some will get out of the pool and ask if I need help while others will watch but give me lots of room.
Thursday on top of all the kids and screaming, there was the water aerobics for the over 50's, bloody fantastic, I cant wait to be over 50, it looks like good fun.
The pool is sort of divided up into three, so public swim is a large chunk to the right of the pool, lane swimming is in the middle and then on the left of the pool the whole of the shallow end is taken for water aerobics. leaving a big chunk of deep water beyond the over 50's more or less swimmer free, so, in my mind, I thought this would be the safer option, I got in the deep end, clung to the edge and checked out the other swimmers, as far as I could tell there was two ladies swimming slowly and chatting, and a bloke ploughing up and down beside the lane swimming. Perfect I waited for the ladies to start swimming away, waited a few seconds and followed.
Swimming slowly I was fairly confident that I knew where everyone was, so I concentrated on remembering to breath, I swam right up to the floating markers that told me where the water aerobics was and held on to the edge while I fiddled about trying to see if I could touch my feet on the bottom of the pool. Success! My tippy toes touched so I was well pleased, I was proper smiling to myself, thinking that I knew exactly what I was doing, I knew where everyone was swimming, and I could get my toes on the ground in the sort of shallowish water. Feeling rather smug I swung my body round in preparation to swim up to the deep end, but there was this face, literally two inches away from mine, the face had blue goggles on and a bit fat toothy grin, I smiled politely back and wait for the face to move off for its swim.
The dam face and its body weren't going anywhere, for a second I felt a little uneasy as the person just floated in the water watching me.
Do I ask the face if it wouldn't mind moving a little so I could swim past? or do I wait? I had a feeling that the face wasn't quite a regular face, I felt very uneasy now, the face had appeared from no where, I had given opportunity for it to speak, but it chose not to, I wasn't even sure if it was a male or female.
In the end I turned back toward the over 50's exercising and pretended to watch them for a while.
When I plucked up enough courage to look back, the face and goggles had gone. I began to swim toward the deep end, the life guard asked me if I was ok, I nodded and kept moving, I was spooked, but probably unnecessarily, it was most likely just someone who had been in the lane swimming and had needed a break, either way I didn't like what I felt, I did a few more lengths and got out and went to find my mate in the public swim area of the pool.
And that was the last I thought about it until today when I went back to the pool.
Funny how your life touches tones of people each day, some stand out for different reasons, I recon I speak to 20 or 30 people when I am walking the Ralph, even at 7am I meet people who don't give me the same uneasy vibe at the face in the pool.
Friday at work we took our students on a school trip. It was a beautiful day and we wondered around some glorious gardens, had lunch then looked around the little farm they have. Again the place was absolutely packed with every other school already broken up for Easter, there wasn't to many people around the gardens but the picnic area and the farm were jammed.
After lunch, we needed to take our guys to the loo, I pushed a wheelchair and its little occupant to the disabled loo's...correction, Loo.....there was only one disabled loo near the picnic area, but there was a good sized toilet block for both male and females, so there we are standing outside the disabled Loo, waiting for the Loo to become vacant. The flow of people going in and out of the regular loo's was moving quickly.
When the disabled Loo door opened a woman and her daughter, about six years old, came out, when she saw us waiting, she was so apologetic and shamed face, she went into this babbled explanation of how her daughter needed to go pee pee desperately and she (mum) was worried that she (daughter) might wet herself.
The woman so wanted me to say, ohhhh that's ok, but I just couldn't, so I just looked at her then moved the wheelchair into the loo, I cant tell you how many times people with 'mainstream' children opened the door to come in while I was changing my little charge, I never lock the door when I am alone in a toilet with a student for a whole load of different reasons, but mostly because if I need help, medical help, for my charge I know I can throw open the door and shout, with out taking my eyes off the child.
So, I have to say, its not really something that I think about much, lets face it, who really cares about who uses which loo? Is that because I am able to use both the disabled and the ladies though? Is it because I am fiercely protective over the children I work with? But it really annoyed me that some of the parents thought they could jump the queue and nip to the disabled. I am confusing myself I am not sure if this toilet thing is a big thing or not, disabled toilets are there for the disabled and at the end of the day if you don't have a disability then you shouldn't be using them, and that's that.
Tonight we have had a discussion, my family have decided that under no uncertain terms should a non disabled person use a disabled toilet, it was even suggested that people with a disability should be given a key to use the loo, which is kept locked and then a 'in use' sign lights up when its occupied. i don't know, its a bit of a grey area I suppose, the girls think its just lazy and that some people are simply selfish.
Well, that's it for tonight my friends, I am tired, even Ralph has put himself to bed!
Goodnight and speak soon x
Still no sign of the 'All about me' Blog I am afraid, I know I should sit and make a real effort to write it but it will come when its ready.
Tonight I thought I would try the disabled swim at my local swimming pool, my youngest daughter was coming in with me as my carer, my eldest and my other half were going to watch, its only on once a week for a hour, but you know, the one night I decide to give it ago is the one night it isn't on because there was a swimathon, dam it!
Never mind, I will try it again next week, I did go for a swim mid week with my mate but it was a bit too busy for me as most schools had broken up for the Easter hols, so parents had brought their little darlings along to the pool to kill some time, Mums sat with their faces in their phones while their offspring splashed, screamed and dived bombed off the side as if they had eaten 27 chocolate bars for breakfast.
Don't get me wrong, I most certainly do not begrudge anyone having fun and they do have lane swimming for people who just want to plough up and down but I am not a strong enough swimmer to do the lanes, I like to stay near the edge, I also cant see other people swimming towards me so I don't have a very good awareness of others around me, when I can hear lots of noise it distracts me from my immediate surrounding, added to that, the screaming and the splashing echo's around the pool and I have no idea if the people splashing are near me or on the other side of the pool. All in all, I just panic! So that's why I like to stay near the edge, I know there is something other than very deep water near me if I feel Panic, one of the first rules of a panic attack is to find something solid to push your back against and thats is kinda hard to do when you are surrounded by liquid, I can be out of the water quickly if I need to.
I always feel people watching me when I walk in with my cane, I always take my towel and use it to balance my cane on when I leave it against the wall so that it doesn't slide down and get in some ones way or I wont be able to see it and panic that some one has pinched it....I know what you're thinking...WHY would some one want to pinch your cane? But you never know!
Anyway, like I say, I always attract curious glances, people act differently, some will get out of the pool and ask if I need help while others will watch but give me lots of room.
Thursday on top of all the kids and screaming, there was the water aerobics for the over 50's, bloody fantastic, I cant wait to be over 50, it looks like good fun.
The pool is sort of divided up into three, so public swim is a large chunk to the right of the pool, lane swimming is in the middle and then on the left of the pool the whole of the shallow end is taken for water aerobics. leaving a big chunk of deep water beyond the over 50's more or less swimmer free, so, in my mind, I thought this would be the safer option, I got in the deep end, clung to the edge and checked out the other swimmers, as far as I could tell there was two ladies swimming slowly and chatting, and a bloke ploughing up and down beside the lane swimming. Perfect I waited for the ladies to start swimming away, waited a few seconds and followed.
Swimming slowly I was fairly confident that I knew where everyone was, so I concentrated on remembering to breath, I swam right up to the floating markers that told me where the water aerobics was and held on to the edge while I fiddled about trying to see if I could touch my feet on the bottom of the pool. Success! My tippy toes touched so I was well pleased, I was proper smiling to myself, thinking that I knew exactly what I was doing, I knew where everyone was swimming, and I could get my toes on the ground in the sort of shallowish water. Feeling rather smug I swung my body round in preparation to swim up to the deep end, but there was this face, literally two inches away from mine, the face had blue goggles on and a bit fat toothy grin, I smiled politely back and wait for the face to move off for its swim.
The dam face and its body weren't going anywhere, for a second I felt a little uneasy as the person just floated in the water watching me.
Do I ask the face if it wouldn't mind moving a little so I could swim past? or do I wait? I had a feeling that the face wasn't quite a regular face, I felt very uneasy now, the face had appeared from no where, I had given opportunity for it to speak, but it chose not to, I wasn't even sure if it was a male or female.
In the end I turned back toward the over 50's exercising and pretended to watch them for a while.
When I plucked up enough courage to look back, the face and goggles had gone. I began to swim toward the deep end, the life guard asked me if I was ok, I nodded and kept moving, I was spooked, but probably unnecessarily, it was most likely just someone who had been in the lane swimming and had needed a break, either way I didn't like what I felt, I did a few more lengths and got out and went to find my mate in the public swim area of the pool.
And that was the last I thought about it until today when I went back to the pool.
Funny how your life touches tones of people each day, some stand out for different reasons, I recon I speak to 20 or 30 people when I am walking the Ralph, even at 7am I meet people who don't give me the same uneasy vibe at the face in the pool.
Friday at work we took our students on a school trip. It was a beautiful day and we wondered around some glorious gardens, had lunch then looked around the little farm they have. Again the place was absolutely packed with every other school already broken up for Easter, there wasn't to many people around the gardens but the picnic area and the farm were jammed.
After lunch, we needed to take our guys to the loo, I pushed a wheelchair and its little occupant to the disabled loo's...correction, Loo.....there was only one disabled loo near the picnic area, but there was a good sized toilet block for both male and females, so there we are standing outside the disabled Loo, waiting for the Loo to become vacant. The flow of people going in and out of the regular loo's was moving quickly.
When the disabled Loo door opened a woman and her daughter, about six years old, came out, when she saw us waiting, she was so apologetic and shamed face, she went into this babbled explanation of how her daughter needed to go pee pee desperately and she (mum) was worried that she (daughter) might wet herself.
The woman so wanted me to say, ohhhh that's ok, but I just couldn't, so I just looked at her then moved the wheelchair into the loo, I cant tell you how many times people with 'mainstream' children opened the door to come in while I was changing my little charge, I never lock the door when I am alone in a toilet with a student for a whole load of different reasons, but mostly because if I need help, medical help, for my charge I know I can throw open the door and shout, with out taking my eyes off the child.
So, I have to say, its not really something that I think about much, lets face it, who really cares about who uses which loo? Is that because I am able to use both the disabled and the ladies though? Is it because I am fiercely protective over the children I work with? But it really annoyed me that some of the parents thought they could jump the queue and nip to the disabled. I am confusing myself I am not sure if this toilet thing is a big thing or not, disabled toilets are there for the disabled and at the end of the day if you don't have a disability then you shouldn't be using them, and that's that.
Tonight we have had a discussion, my family have decided that under no uncertain terms should a non disabled person use a disabled toilet, it was even suggested that people with a disability should be given a key to use the loo, which is kept locked and then a 'in use' sign lights up when its occupied. i don't know, its a bit of a grey area I suppose, the girls think its just lazy and that some people are simply selfish.
Well, that's it for tonight my friends, I am tired, even Ralph has put himself to bed!
Goodnight and speak soon x
Sunday, 2 April 2017
Am I a Burden?
Good morning everyone,
I have been trying to re write the 'All about me' blog.
But its much harder than I thought it would be, I have written and deleted it four times this week, I have walked away and come back to it, but it just wont flow like it usually does!
Although, its hard to write about yourself positively when you feel so crappy! I still have niggling tooth ache where the old teeth used to be, so I suppose that's sort of phantom tooth ache!
Seriously, last week I felt so awful. On Thursday the sun shone here and made me feel more motivated, I pottered around the house with Ralph following me from room to room hoping for one of our long walks.
It took me all morning to change the sheets on the three beds in our house, stuff them in the washing machine and peg them on the line, bending down is a real bitch and sends a dull throbbing ache through my gums, so I balanced the washing basket on the edge of the fish pond to save bending.
Mid afternoon I noticed Ralph sitting by the front door making these stupid whimpering noises so I caved in and took him for a very slow walk, the sun was beautiful, I was glad to be outside and I started to feel much better.
Friday I thought I would go back to work, I only managed until lunch time, I felt so rubbish I came home.
My girl had tickets to see All Time Low on Friday night, a musical band, Christ that makes me sound like a old lady, I say musical as I am not sure what category it comes under...rock...punk...pop, I dunno!
Anyway the concert was in Brixton London, and months ago I had booked a hotel for us in Finsbury Park, its so much cheaper than central London, with the idea that my youngest and I would go into London after school, drop our bags into the hotel and then go meet my eldest daughter from college, have a bit of a mooch around, go for dinner, back to the hotel, shower, change, they would go off to the concert and I would sit in the bar....Toothache had better ideas....we got on a half empty train at Arlesey and before the train had passed the end of the platform, I was asleep, and I don't mean, gently dosing with my eyes closed, I mean full on snoring my head off, dribble trickling down my chin, the sort of sleep you have on a Sunday afternoon when you are stuffed full of roast dinner and have had a glass of wine or two.
When I woke up as we approached Finsbury Park I noticed these four blokes sitting in silence, looking at each other, they looked shell shocked, so I just smiled and said as I picked up my bag....best 40 minute kip I've had for days, and hurriedly got off the train, I did notice that my youngest daughter who was sat on the other side of the seats pretended she wasn't with me!
I could feel these blokes watching me as the train left and moved past me, well, everyone snores at some point right?
Then, I realised that I had no idea where I was going, luckily eldest daughter was on the ball and met us at the exit of the station and marched us off in the beautiful sunshine into the not so sunny parts of Finsbury Park, now I know why the hotel was so much cheaper, the Arsenal shop or whatever it is, is the shiniest building and sort of stands out like a sore thumb.
Anyway, we found the hotel, then our room and then this.....
I know the photo is a bit rubbish, but it was the biggest bed I have ever seen, and all mine!! There was a big television on the wall in front of it, and in the bathroom, there was a actual big bath!!
My evening plans started to look cosy.
We went to our favourite Wagamammas in Islington for a early tea, I am so familiar with this restaurant, and that's the problem, you become so familiar that the thought of trying somewhere else seems impossible. I know where the loo's are, I know I don't have to move once I am sat, and there is this massive glass window at the front which lets in so much natural light. It is also a quiet restaurant, well I mean, you don't really get other noises that are distractions, they don't have loud intrusive music playing like some restaurants do, and the staff are always helpful, quiet and attentive, actually considering there is a cinema, a music venue and a busy road beside the restaurant, the noise level is very good.
The menu, however is too small to read, and this makes me order the same thing each time, having said that, Wagamammas has been the only large chain restaurant to offer magnifiers that I have found so far...I didn't need a menu or a magnifier on Friday to order rice and curry sauce, as that's all my mouth could manage.
After the meal we nipped across to a little Sainsbury and picked up some chocolate and drinks then made our way back to the hotel, 5.30pm, on a Friday in London on the tubes.....I don't think I need to say anymore than that really!!
My eldest has now acquired a 'London mode' where she joins the rest of the commuting community and barrels along, alert at every single thing, noticing breaks in the crowd and running up and down escalators, sadly, I cannot keep up and began to feel a little useless as she started barking orders to, keep up, mind the step and if we get separated just get on the next tube and she will wait for me..WTF..I am the Mummy SHE is the daughter, i am supposed to be the one taking care of them, yet here we are, roles reversed.
When back at the hotel, the girls had gone off together into the night to the concert, and I was laying on the massive bed, all alone, I began wondering about families and the impact of disabilities on siblings, parents and other members of the family.
I work with children who have all different kinds of disabilities and see some families who appear to be very tight knit, but do you really know what is going on in the minds of the brothers and sisters of these children.
For me, and from my point of view I have always been very independent so letting someone else take the lead, especially my children, was exceptionally hard, don't get me wrong, I am very proud of the confidence and knowledge my children show toward my disability, my youngest always tells me when there is steps approaching and will walk in front of me counting them so I know how many there are, they seem to have taken to helping me naturally, and they seem to understand the right balance of support.
I worry about turning into a burden to both my girls and my partner, I worry a lot about the future and will not let my children look after me, they have their own lives to live and nothing will make me prouder than to here them achieving all the things they strive for, and the same for my partner, I and my disability will not hold him back from opportunities that may arise as we go along, even if that means growing old alone, i am scared of resentment and rejection, and can often feel myself wanting to run away from those emotions.
Again as I laid sprawled on the bed, its another one of those situations where, if you think about it too much or for too long it drives you mad, and you end up alone, sour and hating the world and its injustices, or you pull yourself together and look at what it really is, does it really matter if my Daughter takes charge while we are out in the middle of London on a Friday afternoon, she does it every week, week in and week out, she know London like she knows the back of her hand, I however go maybe four or five times a year, and not often in rush hour!
So, maybe, just maybe, the look on her face isn't that of, mum, you are a pain in the arse, you walk too slow and you are always getting in the way but a look of, I can see you hate this mum, let me try and get you to somewhere that you feel safer as quickly as we can.
Then I began to think about all my friends, and how they behave around me, I always think they must think I am a burden to them, that looking out for me is the last thing they want to be doing, life is hard enough for people without considering which place will be best for me to sit, or where can we go out where I will be most comfortable, do you understand what I mean?
Its easy to fall into a trap of thinking that you are a burden to you family and friends that are around you, but put yourself in their shoes, you would do exactly the same for some one you love or like to be with.
Thinking you are a burden will always be there, some days will be worse than others and some situations will be worse, my partner has a driving job, he is on the road for long hours, so when he comes back I don't feel like I can say, oh can you take me..where ever!
Thinking you are a burden, will grow inside you and turn into something that stops you asking for help, stops you going out to meet your friends and controls your state of mind, ensuring that your self esteem hits rock bottom and stays there.
I think there is only one way to conquer this, and that is to acknowledge it, thank people for letting you sit in the place with the most light, thank them for telling you there is a step approaching. Accept that you do need help but that doesn't make you a burden, I am not a doctor and I don't have any experience in mental health, but as far as I can see, being honest with yourself and talking about the way you feel to the people around you is better than any pill a doctor prescribes.
So, lets think about it for a second, are YOU a burden?
NO, you are a person, people need to rely on others from time to time, whether you have a disability or not, its how you look at yourself that matters, and anyone who does consider you as a burden has no place in your life, out with the negative in with the positive...please!
well, I am off to try and balance the washing basket on the fish pond again as the sun is shining through my bedroom window and telling me to get up.
I know I only really talk a little into some of the emotions and thoughts I have, and I hope you all get a little something for the rubbish I write, but this is a issue that overwhelms me and I do have major issues with it, it is so hard to keep a positive train of thought when you have been so independent in the past and now find you have to rely on others and their good will, and the people who love you and care about you will always want to help you, don't push them away.
Speak soon xx
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