To Nikki
The way to DLA's heart is Health & Safety...
Forget work reading etc
Go for how you cant see which is the hot bit on the electric hob, where the frying pan handle ends, what the microwave instructions say, if there's smoke !!(cooking is ine of their necessaries - you have to prove you cant get yourself a hot dinner)
Also safety - if there's a motorbike coming up the road,
a plate glass door shut in front of you in town, a kerb between two areas of same colour paving... where the edge of a pond or swimming pool is, if you miss the worktop and a glass breaks you cant find the pieces.
Selfhelp (food clothes toilets hygiene health safety) are the kays areas eg cant see the numbers on the washing machine, sizes/pricetags.. dont give up, make it an interest! kateF xx
Quicktopic posts: May 2003
Moderators: Anne Klepacz, John Smith, Sweet
-
Janet Manning
The various contributions about getting registered as partially sighted got me thinking and reflecting on the extent to which I modify my life to fit in with my vision..
I know several people without KC who have uncorrected vision as bad as mine. The difference is that with glasses they get almost perfect correction and are therfore NOT partially sighted. Many of us get little or no correction with glasses and are therefore dependent on lenses. Lens wearing time varies considerably from one individual to another and in each individual over time. The quality of correction can also vary from day to day. Eczema, hydrops, conjunctivitis etc can all reduce lens time or make it impossible to use lenses at all for variable lengths of time. At these times and outside lens wearing time we ARE partially sighted, as we have no viable alternative to correct our vision.
When I only had 6-8 hours lens time a day max. with soft perms, I felt partially sghted. Most of my waking hours were spent unable to see more than the top 2 lines on the chart. Now that I have 12 hours a day regularly with sclerals I don't feel partially sighted, but this is largely because of the adaptations I have made to my lifestyle. I work from home, which cuts out travel time to work, thus maximising 'sighted' time for my use. I usually avoid putting my lenses in until about 10 a.m. ( Housework is done 'blind' - what the eye doesn't see the heart doesn't grieve over!!!) This means that I have a 'sighted' evening. On days when I travel to attend e.g. a seminar I end up taking the lenses out as soon as I get home about 7 p.m. I sympathise with those of you who have to do this daily to sustain a job. It means you get no 'sighted' time for your own purposes.
I cannot read without lenses and after my transplants asked the surgeon to sign a form to this effect so that I could borrow books on tape from Calibre. His initial response was 'you're not partially sighted', but actually I am - PART TIME!
What the recent postings have done is make me think about the adaptations I have made, which now seem normal to me, but are actually quite considerable. E.G. after a day at a seminar recently, we had a house guest, who suggested a meal out. I declined. It's just such an effort to go out without lenses. Can't read the menu, fall over chairs in dimly lit restaurant, can't find the loo, or see stairs to loo etc, go in gents by mistake (yes, several times!) Without lenses cooking in my own kitchen is a much better option.
So where is all this rambling leading me?
I think there is a case for some of us to be registered partially sighted, particularly in order to get the assistance we require at school, college, Uni or work. I don't particularly like labels and I'm definitely not into victim mode, but in the face of a huge lack of understanding even from some of the professionals, who should know better eg surgeons/consultants, teachers, I think it's worth fighting for as a tool for EMPOWERMENT.
Some of us may only be partially sighted, part time, but we should be able to use that time as effectively as possible. Registration as partially sighted may be the key to achieving this for some of us. Maybe recognition of this aspect of KC is something that the group could actively campaign for, to empower KCers to make the best use of ALL their time.
What do others think?
I know several people without KC who have uncorrected vision as bad as mine. The difference is that with glasses they get almost perfect correction and are therfore NOT partially sighted. Many of us get little or no correction with glasses and are therefore dependent on lenses. Lens wearing time varies considerably from one individual to another and in each individual over time. The quality of correction can also vary from day to day. Eczema, hydrops, conjunctivitis etc can all reduce lens time or make it impossible to use lenses at all for variable lengths of time. At these times and outside lens wearing time we ARE partially sighted, as we have no viable alternative to correct our vision.
When I only had 6-8 hours lens time a day max. with soft perms, I felt partially sghted. Most of my waking hours were spent unable to see more than the top 2 lines on the chart. Now that I have 12 hours a day regularly with sclerals I don't feel partially sighted, but this is largely because of the adaptations I have made to my lifestyle. I work from home, which cuts out travel time to work, thus maximising 'sighted' time for my use. I usually avoid putting my lenses in until about 10 a.m. ( Housework is done 'blind' - what the eye doesn't see the heart doesn't grieve over!!!) This means that I have a 'sighted' evening. On days when I travel to attend e.g. a seminar I end up taking the lenses out as soon as I get home about 7 p.m. I sympathise with those of you who have to do this daily to sustain a job. It means you get no 'sighted' time for your own purposes.
I cannot read without lenses and after my transplants asked the surgeon to sign a form to this effect so that I could borrow books on tape from Calibre. His initial response was 'you're not partially sighted', but actually I am - PART TIME!
What the recent postings have done is make me think about the adaptations I have made, which now seem normal to me, but are actually quite considerable. E.G. after a day at a seminar recently, we had a house guest, who suggested a meal out. I declined. It's just such an effort to go out without lenses. Can't read the menu, fall over chairs in dimly lit restaurant, can't find the loo, or see stairs to loo etc, go in gents by mistake (yes, several times!) Without lenses cooking in my own kitchen is a much better option.
So where is all this rambling leading me?
I think there is a case for some of us to be registered partially sighted, particularly in order to get the assistance we require at school, college, Uni or work. I don't particularly like labels and I'm definitely not into victim mode, but in the face of a huge lack of understanding even from some of the professionals, who should know better eg surgeons/consultants, teachers, I think it's worth fighting for as a tool for EMPOWERMENT.
Some of us may only be partially sighted, part time, but we should be able to use that time as effectively as possible. Registration as partially sighted may be the key to achieving this for some of us. Maybe recognition of this aspect of KC is something that the group could actively campaign for, to empower KCers to make the best use of ALL their time.
What do others think?
-
umbilica@umbilical.demon.
Susan said:
I haven't posted any messages of late as I didn't want to appear neurotic or depressive (or both)and also I have not been able to see much at all. Anyway I now have my scleral lenses (after a 15 week wait) and today is my first day of wearing.
Congratulations! And please don't worry about appearing
neurotic; I'm sure you're in good company.
nightmare. Today putting them in took half a box of tissues, 3
packets of steripod and around an hour in which time I think my husband has decided he is divorcing me. I seemed to keep getting air bubbles then cloudy spots which appeared to be sticky spots on the lenses.
Errr... are you sitting down to do this? If so, try standing up and leaning over the kitchen sink/bathroom washbasin (put the
plug in first). And make sure you fill the lens right up to the brim with saline - that makes it easier not to get air bubbles.
Anyway I am just coming to the end of my 3 hours
which brings me to my next point, clean with Bausch & Lomb and
then rinse well under the cold tap?? (seems very different to my past experiences of lens hygene) then dry off with a tissue and store dry??
Yup. Or you could use Fairy Liquid instead of specialist
cleaner - it works just as well, and is much, much cheaper, and
is what Moorfields first suggested to me (I now have two bottles of washing up liquid - the "clean" one I use for the contacts
and ordinary washing up, and the "DIY" one I use if I'm cleaning paint brushes, scrubbing the top of the cooker etc with dirty
finger marks on it.
In fact, I tend to take mine out, dry then and put them away, and then clean them just before I put them in again. This helps to
stop getting the sticky, cloudy patches because it reduces the
amount of handling they get being wrapped up and put away/got
out and unwrapped, etc between cleaning and putting in.
Does anyone store them wet? and if so how and what sort of case?
No - why risk getting my handbag all wet if the case leaks?
The things I would say I have noticed in the last 3 hours are;- 1. That I can actually see out of both eyes (and my house is
extremely dusty,how could people not tell me that you couldn't
see the telly?) 2. My eyes feel dry I am not sure if this will
pass or if there is something I could use that would help.
Don't worry about the dust......... just be glad you can see it
(and just think, if it weren't there, you wouldn't have
noticed!) as for dry eyes, make sure you blink fully and
regularly and don't sit in drafts. It may pass as you get used
to the lenses, in which case I'd be inclined not to start
putting chemicals in your eyes while you're still in the early
stages of acclimatisation.....
Lastly how do you all get solutions etc? At the hospital they
suggested that I may want to get the steripod on prescription.
My local chemist hasn't heard of it, another well know chemist
have told me they can get it but looking at the price they quote (44p per sachet) I am going to need a new mortgage. I have rung my doctors and the receptionist has told me I must see the
doctor so I have an appointment for Tuesday, am I going to have to beg for this on prescription? Surely it is not classed as a
cosmetic luxury? I need the lenses to see and I need the
steripod for the lenses.... any ideas???
Moorfields give prescriptions for solutions, notionally 3 months supply per prescription charge. You have to take the
prescriptions to Moorfields pharmacy, though, not to any chemist up the high street. Which means, if one comes to an appointment from well out of town, bring a rucksack, wheely-suitcase or
similar!
Rosemary
--
Rosemary F. Johnson
I haven't posted any messages of late as I didn't want to appear neurotic or depressive (or both)and also I have not been able to see much at all. Anyway I now have my scleral lenses (after a 15 week wait) and today is my first day of wearing.
Congratulations! And please don't worry about appearing
neurotic; I'm sure you're in good company.
nightmare. Today putting them in took half a box of tissues, 3
packets of steripod and around an hour in which time I think my husband has decided he is divorcing me. I seemed to keep getting air bubbles then cloudy spots which appeared to be sticky spots on the lenses.
Errr... are you sitting down to do this? If so, try standing up and leaning over the kitchen sink/bathroom washbasin (put the
plug in first). And make sure you fill the lens right up to the brim with saline - that makes it easier not to get air bubbles.
Anyway I am just coming to the end of my 3 hours
which brings me to my next point, clean with Bausch & Lomb and
then rinse well under the cold tap?? (seems very different to my past experiences of lens hygene) then dry off with a tissue and store dry??
Yup. Or you could use Fairy Liquid instead of specialist
cleaner - it works just as well, and is much, much cheaper, and
is what Moorfields first suggested to me (I now have two bottles of washing up liquid - the "clean" one I use for the contacts
and ordinary washing up, and the "DIY" one I use if I'm cleaning paint brushes, scrubbing the top of the cooker etc with dirty
finger marks on it.
In fact, I tend to take mine out, dry then and put them away, and then clean them just before I put them in again. This helps to
stop getting the sticky, cloudy patches because it reduces the
amount of handling they get being wrapped up and put away/got
out and unwrapped, etc between cleaning and putting in.
Does anyone store them wet? and if so how and what sort of case?
No - why risk getting my handbag all wet if the case leaks?
The things I would say I have noticed in the last 3 hours are;- 1. That I can actually see out of both eyes (and my house is
extremely dusty,how could people not tell me that you couldn't
see the telly?) 2. My eyes feel dry I am not sure if this will
pass or if there is something I could use that would help.
Don't worry about the dust......... just be glad you can see it
(and just think, if it weren't there, you wouldn't have
noticed!) as for dry eyes, make sure you blink fully and
regularly and don't sit in drafts. It may pass as you get used
to the lenses, in which case I'd be inclined not to start
putting chemicals in your eyes while you're still in the early
stages of acclimatisation.....
Lastly how do you all get solutions etc? At the hospital they
suggested that I may want to get the steripod on prescription.
My local chemist hasn't heard of it, another well know chemist
have told me they can get it but looking at the price they quote (44p per sachet) I am going to need a new mortgage. I have rung my doctors and the receptionist has told me I must see the
doctor so I have an appointment for Tuesday, am I going to have to beg for this on prescription? Surely it is not classed as a
cosmetic luxury? I need the lenses to see and I need the
steripod for the lenses.... any ideas???
Moorfields give prescriptions for solutions, notionally 3 months supply per prescription charge. You have to take the
prescriptions to Moorfields pharmacy, though, not to any chemist up the high street. Which means, if one comes to an appointment from well out of town, bring a rucksack, wheely-suitcase or
similar!
Rosemary
--
Rosemary F. Johnson
-
Susan Mason
Rosemary and Janet
Thanks for your advice and tips. Today has been a little hectic, seem to have taken a step back with lens insertion rather than a step forwards. Anyway taking it one day at a time.
If anyone else has any tips/advice/horror storys would be glad to hear them.
PS - Harpo if you are reading this how are you???
Lastly on a funny note my 6 year old little boy was very, very upset this afternoon after watching me struggle with the lenses for quite some time he switched off the light and shouted 1, 2, 3 scary MONSTER!!! But mummy where are your GREEN eyes like the man at the hospital gave you??? Nice to know he is taking this all so well in his stride I should take a leaf out of his book and chill out about it I suppose!
Thanks for your advice and tips. Today has been a little hectic, seem to have taken a step back with lens insertion rather than a step forwards. Anyway taking it one day at a time.
If anyone else has any tips/advice/horror storys would be glad to hear them.
PS - Harpo if you are reading this how are you???
Lastly on a funny note my 6 year old little boy was very, very upset this afternoon after watching me struggle with the lenses for quite some time he switched off the light and shouted 1, 2, 3 scary MONSTER!!! But mummy where are your GREEN eyes like the man at the hospital gave you??? Nice to know he is taking this all so well in his stride I should take a leaf out of his book and chill out about it I suppose!
-
umbilica@umbilical.demon.
Janet said:
The various contributions about getting registered as partially sighted got me thinking and reflecting on the extent to which I modify my life to fit in with my vision..
etc etc
So where is all this rambling leading me?
I think there is a case for some of us to be registered
partially sighted, particularly in order to get the assistance
we require at school, college, Uni or work. I don't particularly like labels and I'm definitely not into victim mode, but in the face of a huge lack of understanding even from some of the
professionals, who should know better eg surgeons/consultants,
teachers, I think it's worth fighting for as a tool for
EMPOWERMENT.
Some of us may only be partially sighted, part time, but we
should be able to use that time as effectively as possible.
Registration as partially sighted may be the key to achieving
this for some of us. Maybe recognition of this aspect of KC is something that the group could actively campaign for, to empower KCers to make the best use of ALL their time.
What do others think?
Agree entirely! I've found out myself that there are doors to
training that don't open without a registration number - and
without the training, in use of adaptive technology, it's
impossible to get a job.
Another problem is the unpredictability of variations in lens
use and (in)tolerance - if one knew, for example, that one would have lenses 10-6 every day, one could plan around it. but
sometimes 12 hours a day is OK, and then next week, some plant
has started flowering, or the air pollution has gone up, or the
sun has come out, and the bits of plastic won't stay in for more than half-an-hour - and one has no warning. And if, like I was
last week, one is away at a conference and suddenly the eyes are streaming and the lenses won't stay in, and you have to give the treasurer's report to the AGM when you have to hold your notes
two inches from your eyes........
I'm not into victim mode either - but sometimes, it would be so
much easier to be able to help ourselves with that magic bit of
paper to open the doors so we could get the right training or
special kit. And to stop people thinking we're frauds if we
don't have the right number to quote to them.
Janet also said:
House work is done 'blind' - what the eye don't see, the heart
don't grieve over!!!
My sentiments entirely!
Rosemary
--
Rosemary F. Johnson
The various contributions about getting registered as partially sighted got me thinking and reflecting on the extent to which I modify my life to fit in with my vision..
etc etc
So where is all this rambling leading me?
I think there is a case for some of us to be registered
partially sighted, particularly in order to get the assistance
we require at school, college, Uni or work. I don't particularly like labels and I'm definitely not into victim mode, but in the face of a huge lack of understanding even from some of the
professionals, who should know better eg surgeons/consultants,
teachers, I think it's worth fighting for as a tool for
EMPOWERMENT.
Some of us may only be partially sighted, part time, but we
should be able to use that time as effectively as possible.
Registration as partially sighted may be the key to achieving
this for some of us. Maybe recognition of this aspect of KC is something that the group could actively campaign for, to empower KCers to make the best use of ALL their time.
What do others think?
Agree entirely! I've found out myself that there are doors to
training that don't open without a registration number - and
without the training, in use of adaptive technology, it's
impossible to get a job.
Another problem is the unpredictability of variations in lens
use and (in)tolerance - if one knew, for example, that one would have lenses 10-6 every day, one could plan around it. but
sometimes 12 hours a day is OK, and then next week, some plant
has started flowering, or the air pollution has gone up, or the
sun has come out, and the bits of plastic won't stay in for more than half-an-hour - and one has no warning. And if, like I was
last week, one is away at a conference and suddenly the eyes are streaming and the lenses won't stay in, and you have to give the treasurer's report to the AGM when you have to hold your notes
two inches from your eyes........
I'm not into victim mode either - but sometimes, it would be so
much easier to be able to help ourselves with that magic bit of
paper to open the doors so we could get the right training or
special kit. And to stop people thinking we're frauds if we
don't have the right number to quote to them.
Janet also said:
House work is done 'blind' - what the eye don't see, the heart
don't grieve over!!!
My sentiments entirely!
Rosemary
--
Rosemary F. Johnson
-
umbilica@umbilical.demon.
Kate said:
The way to DLA's heart is Health & Safety...
Ah!! thanks very much for the tip.
I should have been telling them, then, about the time I got hot
porage everywhere because I couldn't see well enough to tell if
the microwave base plate was back in place properly and it
wasn't; or the times I've poured hot water over the draining
board rather than into the mug or tea pot. Or the times I've
fallen down steps I didn't realise were there (there's a
particular place at Epsom racecourse where all the steps have a
white stripe along the edge - *except* the top one!!!!) Or
about being worried I'm about to step off a kerb under the front wheel of a bicycle (pedal variety) cos unlike cars or vans, you
can't hear a bike - until the rider starts to swear at you for
knocking her/him flying, that is.......
Rosemary
--
Rosemary F. Johnson
The way to DLA's heart is Health & Safety...
Ah!! thanks very much for the tip.
I should have been telling them, then, about the time I got hot
porage everywhere because I couldn't see well enough to tell if
the microwave base plate was back in place properly and it
wasn't; or the times I've poured hot water over the draining
board rather than into the mug or tea pot. Or the times I've
fallen down steps I didn't realise were there (there's a
particular place at Epsom racecourse where all the steps have a
white stripe along the edge - *except* the top one!!!!) Or
about being worried I'm about to step off a kerb under the front wheel of a bicycle (pedal variety) cos unlike cars or vans, you
can't hear a bike - until the rider starts to swear at you for
knocking her/him flying, that is.......
Rosemary
--
Rosemary F. Johnson
-
Susan Mason
At the hospital they told me that the lenses were slightly shallower at the side that went nearest to the bridge of my nose and hense deeper (more slanted it seems to me at the temple side) I seem to be struggling to see/decide which way round they sould be when I am putting them in wet hands slippy saline etc does not help, especially when I get to the second or so attempt. Could this be the reason that I am getting air bubbles. Is it possible to put them in wrong way around eg slightly off centre? One last thing when I do get them in without a bubble I am then 10 minutes or so later getting one or maybe two/three pinhead bubbles is this normal???
Maybe I need to go back to the hospital or maybe I am getting worked up as when I am putting them in I am always doing something else after, going to work, shoppinwanting to watch a program on TV. I am putting them in a good hour or so before I need to be ready as I felt this best, surely I can't start any earlier.
All advice gladly received.
Maybe I need to go back to the hospital or maybe I am getting worked up as when I am putting them in I am always doing something else after, going to work, shoppinwanting to watch a program on TV. I am putting them in a good hour or so before I need to be ready as I felt this best, surely I can't start any earlier.
All advice gladly received.
-
aimee.wilkes@bt.com
-
Andy Fearns
Andy C
Peter Shaw is excellent and is based in Newcaslte under Lyme. I now live in the US but am a native of Stoke on Trent. He did my right transplant. I went to see him privatly for all my pre and post op care and found him to be excellent.
If you like I could have my mother look up his number.
Andy Fearns
afearns@yahoo.com
Peter Shaw is excellent and is based in Newcaslte under Lyme. I now live in the US but am a native of Stoke on Trent. He did my right transplant. I went to see him privatly for all my pre and post op care and found him to be excellent.
If you like I could have my mother look up his number.
Andy Fearns
afearns@yahoo.com
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