Diabetic Retinopathy

Find other people who have the same eye condition as yourself, offer support and advice for living with sight loss.

an older man with a cup of tea listens to a friend

Original post by Sharon

Hi everyone, I am here to contact people who have diabetes either type 1 or type 2 (I have had type 1 for nearly 30 years) I would like us to share our experiences, if you have eye problems are currently having treatments or are registered vision impaired or blind as diabetes is on the increase it would be interesting to share our experiences to find out if there is anything we can do to help others in the future, or a general moan about living with diabetes................

Posted 15 June 2015 4:17pm (21 months ago)
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Sarah07 says

Hi Sharon,

I am visually impaired, but do not have diabetes. However, a member of my family does, but is not visually impaired. I do have a few dietary tips, although I do not work in the health sector. I would give you some practical advice now and say that you should try to balance your diet as much as possible throughout the day and in each meal. It's advisable not to drink too many juiced fruits or vegetables (especially fruits) as this will make your blood sugar rise more quickly. This also applies to mashed potatoes and avoid white bread also where possible. Other than that, I know this can be difficult, but stay positive and follow your dietitioners plan if you have been given one. But honestly, I do know how frustrating it can be when you have to measure your blood sugars every day and keep them regulated, especially when there's temptations!

Posted 30 June 2015 11:39am (20 months ago)
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Sharon says

Hi Sarah

I'm off work ill at the moment with a dreaded stomach bug, thanks for replying and your tips, its nice to hear that even though you don't have diabetes you are knowledgeable, this is what sharing is all about, I do and always have followed a strict diet but sometimes things are taken out of our control with how our bodies work, I have a son who is 24 he was diagnosed aged 8 years and is on insulin too, I have in the past been heavily involved with the local care providers and Diabetes UK, supporting adults and children and their families, I work in the sight loss sector and have noticed a steady climb of people coming to us with issues relating to Diabetes and sight loss (of all ages) the sad fact is I do hear many stories from people with diabetes who believe they are doing the right things with their health its only when they attend a Living with Sight Loss Course at Action they realise what they need to do.......but this should be done before complications set in particularly when it involves loosing your sight......without vision it makes it increasingly harder to look after yourself, I'm sure you would agree with me its all about educating yourself with support.....Regards Sharon

Posted 30 June 2015 2:22pm (20 months ago)
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Neil says

Hi Sharon & Sarah.

I'm not diabetic, but I do have a young nephew of primary school age who is, so it makes me aware of this condition. I think part of the challenge is trying to get this information across to schools were there seems to be an increase in diabetes at a young age.

Posted 1 July 2015 11:30am (20 months ago)
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Christine G says

Hi Sharon, I am diabetic on insulin for 29 years. I have retinopathy and maculopathy. I have been registered sight impaired for a few years and now waiting on forms to be processed to be registered severely sight impaired. being diabetic also means that at at various times what little sight I have is more blurred than usual due to blood glucose levels. I lost a lot of peripheral vision too with the vast amount of laser surgery I had. I also think on diagnosis people should be "scared" into the realities of complications. may be a blind person, an ampytee and a stroke victim could meet at the clinic to discuss the complications and to rid everyone of the "Not me" thoughts. Schools should include this in their health studies and also complications of smoking.

Posted 1 July 2015 12:51pm (20 months ago)
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Sharon says

Hi Neil

I totally agree that Diabetes should be on the school curriculem (sorry about the spelling).

There is very limited support and education awareness in schools and colleges, when my son was diagnosed aged 8 the support he got was terrible, from not being able to do blood tests in class or his injections, being the odd one out due to snacking at certain times, we had to change schools as the first one concentrated on just academic achievement and not the pupil as a whole person, during his time in high school it was better because we had managed to educate him in his condition (but he still didn't feel brave enough to speak out when he had a hypo as he said he didn't want to feel different). Aarron knows he has choices and dependent on the choice (usually the best one) brings him the outcome......he now works full time in car insurance sales.....hes 6ft 4 and as healthy as he can be.......he is at the gym every day and boxes for charity.......he saw me go through losing my sight after 30 years of diabetes it was a very tough time for him.....and me.....I always say to anyone I meet get educated do research in your health condition, talk to people, share, get empowered, I've given talks, presentations, been involved with the media etc, as I believe sharing the right information is a positive step toward living a healthy life.........life itself can be hard enough without having added complications.........at the end of the day it all comes down to funding projects and education.....which is very sad.......perhaps we should get together as a group and push for Diabetes UK to enable this education to be taught in schools??

Posted 1 July 2015 2:53pm (20 months ago)
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Sharon says

Hello _1746

I read your blog and thought snap, gosh I too have similar issues with my eyes, retinopathy, maculopathy....and now cataracts due to all the ops and treatments to save my sight.......my sight is different from day to day and its scary not knowing what vision you will have when waking in the morning......at night or during the winter months I go to work in the daytime and don't venture out even though I have a guide dog in the evenings unless I know where I am going or have a family member with me......yes education is the way forward but scare tactics wouldn't work because at the end of the day we all think it wont happen to us.....we are infallible (when we are young) yes giving talks about different complications that could happen in the future I have always believed is the best way forward......

Posted 1 July 2015 3:04pm (20 months ago)
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Christine G says

yes Sharon we have quite a bit in common. My eyesight worsened when I had cataract surgery. Was brilliant for two weeks then something went wrong requiring laser on the central vision. Now have permanent blurred and poorer vision in that eye. My Consultant will not operate on the other cataract as it is 90% certain to happen again. because of extreme glare from car headlights I do not like being out in the dark either but cannot be helped as living in Scotland, it's dark before 4pm. Christine

Posted 1 July 2015 3:38pm (20 months ago)
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Sharon says

Hi Christine

My consultant told me he wouldn't take the cataract on the right eye as it wouldn't make any difference to my sight due to having a detached retina years ago so I only have a bit of vision in the left (central) initially in my sight loss ignorance I asked if they could transplant eyes........the answer was no as son as the cut the optic nerve that's it......I went to Scotland about 10 years ago now to Avimore in winter it was minus 13.......lovely country.......went by Loch Ness too......the distilleries were all closed as it was between Christmas and New Year......my friends were not to happy.......

Posted 1 July 2015 3:52pm (20 months ago)
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Christine G says

Sharon, Aviemore is lovely any time of the year, but I prefer the warmer days :) Loch ness is mysterious, always spooky I feel. I live in Fife just across from Edinburgh and love it here. I still travel as much as I can though it takes a lot more planning. I also holiday with my Grand daughter who is my guide dog. You just have to make the most of what you have. Christine

Posted 1 July 2015 6:25pm (20 months ago)
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Sharon says

Hi Christine

Plan, plan, plan, that's the word when you have sight loss, aww how old is your granddaughter? I have two grandsons Torston he's now three and a half, he great at guiding me and often holds Tasmin's lead and walks with us, Sullivan is 17 months old and he's proper cheeky you couldn't get two boys so different, Tor is skinny and hardly eats anything where as Sullivan is a proper muncher he's very bonnie, they sometimes come to stay together for the weekend, boy do I end up shattered lol .....but they give me so much joy.......where do you travel to?

Posted 2 July 2015 6:09pm (20 months ago)
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Christine G says

The granddaughter I holiday with is 15. Chloe. We went to Teneriffe 2 Christmases ago, and to Liverpool last year. Booked for shopping in Liverpool again in October. I go to Edinburgh, Glasgow, Perth, Aberdeen and Aviemore plus Dundee always by train being free. We are hoping to go to Turkey next year. I have been all over the world when I had my sight, a new place each time. My 10 year old Katy loves coming out with me too, and is very helpful, but won't go far from Mummy just yet. I find her or the 8 year old exhausting but so much fun. I really need to go eat my dinner as my blurred more than usual eyesight is telling me time to eat. Being warm, not felt like it today. My 15 year old is here to supervise reading my meter and dialing my pen so best be good.

Posted 2 July 2015 7:00pm (20 months ago)
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Sharon says

Wow Christine your inspirational, I went to Ibiza about 9 years ago and Teneriffe about 6 years ago before my sight loss got really bad I loved Teneriffe and would love to go back one day your very lucky Chloe can go with you, Ill have to wait until Torston is older. My parents were going to Edinburgh Tattoo this year but my dad is not well.....hes 73 on Sunday bless (I live next door to my parents, but we don't live in each others houses lol)I know what you mean about the heat....plays havoc with the diet and the bloods I too loose vision when hypo don't get warnings anymore its called brittle diabetes, I'm usually 1.5 to 2.0 Ive changed my long acting insulin but it hasn't made much difference, my control though thr day is great from 8am to 8pm, through the night they rise about 2/3amthen drop quickly, I've always had issues with dawn hypos but manage......we have too..

How old were you when you were diagnosed? Its Friday so thankful its been a busy two days at work.....Im planning a chill tonight and a bit of shopping with mum tomorrow...

Posted 3 July 2015 8:30pm (20 months ago)
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Christine G says

I was on medication which damaged my pancreas so cannot now produce insulin. I was 33 at that point. My Glucose levels have been quite low, or rather the H1bc. I get told to lower then lower the doses. Then I get so tired I want to lie on the road and couldn't care lol. My hypos are usually at night around 2.20 am when I guess the lLantus kicks in. I used to have very good awareness , now I tend to wake in the middle and just want to sleep and ignore it. Luckily something makes me move. It is worrying especially living alone though a partner could sleep through one I guess. I have been at a work stream meeting today at the blind society, as I am on the Care Pathways and user Engagement parts of the See Hear Scotland White Paper working group. Then I had the Ring and Ride take me food shopping. Then just about gave in and napped but managed to stir myself. Not much planned for the weekend as we are due rain again, but lovely to not have to rush anywhere. Have a great weekend ..Christine

Posted 3 July 2015 9:43pm (20 months ago)
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Sharon says

Hi Christine

I was diagnosed at 20, no diabetes in my family and pre diagnosis I was a healthy child and teenager, that was back in the day they would admit you to hospital for two weeks to practise injecting on oranges and make you have a hypo so you'd know what it was like (not good) and when they would bombard you with all the negatives about what would happen to you in the future if you didn't toe the line (it was awful).

Ohh I know what you mean its a constant battle I use to say to the professionals if I was in a bubble and just lived for diabetes I would be perfect but life is not like that, as lots of things affect control....

I was on Lantus for over ten years had it changed last August to Deguladec

(Tresiba) last year to stop the am hypos, but it still happens, my kidney consultant is talking about a pancreas transplant (found out last Jan my kidneys were running at 30% after doc miss diagnosed me, but they are back to 50% now so I am doing something right lol.

I know what you mean about sleeping through them and the tiredness I have some vivid dreams as well last night I was hypo my son was staying over I was having a nightmare a big crocodile was trying to eat my hands I was making a loud nose but couldn't shout, my son heard me came up and woke me are you alright I replied I had a bad dream, he said are you hypo.....I was....the dream upset me so much I slept with the lamp on.....I have lucozade everwhere and on my desk at work ......I live alone too it can be scary.....but we keep going......week days I have to be up at 6am to feed Tasmin my guide dog, then get ready for work (Mon to Fri) scrapping myself off the mattress lol within an hour im ok....I suppose Taz makes me get up when you have a squeeker in your face lol I'm out for 7.30 to travel to work I work at Action for Blind People in Stoke, been there over 5 years now, I love my job it gives me a purpose I am passionate about people and supporting and empowering them, I meet some lovely people of all ages. Its great to know you are involved with the Care Pathway and user group for the See Hear in Scotland I bet its a passion for you.....I am going to take myself to town today to just have a wonder around....all the family are out for a meal Sunday for dads birthday.....then its prep for work Monday....have a fabulous weekend Christine catch up soon..........Sharon x

Posted 4 July 2015 9:40am (20 months ago)
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ActionMember_3148 says

Hi Sharon, I was one of these who thought "i don't feel like i have diabetes " . I was diagnosed in 1997 after being told I had steroid induced diabetes and with in a couple of months was told to go on Insulin, which i refused as i was a tube driver at the time and would of been stopped from driving . All through years of working round railways i bluffed my way through medicals (literally starving myself etc ) just to pass them . it was only in 2012, when i suddenly lost nearly 5 stones in weight that i bit the bullet and went on insulin . I wasn't told that a sudden reduction in blood sugars could increase risk of eye damage . then in early 2013 , I was told by ophthalmologist that they had 18 months to save my sight , I was in disbelief , I was driving 250 miles a day had near perfect sight . Then the laser treatment started , the night vision deteriorating and the bleeds in eyes , more laser and two Vitrectomies later was registered severely sight impaired in May 2014 , my left eye is totally fogged with an unrepairable retina to boot and right eye very very limited . I thought i was a diabetes beater but it will always win with poor control .

Posted 6 July 2015 4:41pm (20 months ago)
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Sharon says

Hello _3148

many thanks for sharing your experience, I totally understand why you refused insulin, I have met many drivers in the past who dreaded the medicals and have supported them, their biggest fear was being diagnosed with diabetes and losing their jobs or having to change their jobs. Gosh you went through a pretty bad time, I met a guy once at the gym who told me since he had been attending the gym he didn't need to take his insulin anymore (he spent every waking hour at the gym) the worst part was he was telling people to stop taking their insulin and go to the gym. He ended up really ill, lost loads of weight to the point he lost teeth and ended up with serious heart problems. I have met others who have followed diabetes advice to the point it took over their entire lives and they still ended up with some form of diabetes complications. I was told by one diabetes specialist that after 15 years of living with diabetes the complications start, its ages you internally (I always say my outside don't look to bad but my insides are like a 100 year old pair of work boots lol, you cant see what diabetes does to your insides........when I talk to people about diabetes they always say oooh I couldn't inject myself, I always say if you had a choice of living or dying you would do it.....but its not about injecting is it....its the constant planning, checking, bloods, diet, exercise, hypos, feeling tired....that's a pain.....eye problems happen so quickly.......so yes in way diabetes bets the best off us......sad but very true......but we have to keep on fighting.......so what do you do now?........work? hobbies? Are you involved in campaigning? or volunteering? .....

Posted 6 July 2015 7:51pm (20 months ago)
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ActionMember_3148 says

Hi Sharon, My name is mat (don't know where weird user name come from lol ). I was medically finished from my last job because of my sight , I was only there less than a year and didn't seem to want to "invest" in me to adjust my job ( I was training nurses and care staff in care homes ) .I finished with railways in 2013 after taking redundancy . so now im learning routes with white cane , finally got on list for guide dogs just last Thursday but of course there is a long wait to get matched . I would like to do volunteering of some sort , what ? I don't really know . thanks for reply.

Posted 6 July 2015 9:27pm (20 months ago)
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Sharon says

Hi Mat, I think you need to fill in your details on here to get rid of the number thingy lol I have looked but it does not say where you live? That's so sad an employer didn't invest in supporting you, training nurses and care staff what a great job. You could get back into it? Have you thought of contacting Actions employment coordinator in your area? They are specialised in supporting people in gaining employment, at our centre we also provide training through different organizations I have just completed my Leadership & Management NVQ Level 2 loved it, our volunteers can also access courses providing they meet the criteria, four of our volunteers have just gained employment outside of Action.

So you are currently completing white cane training that's brilliant, I am sure it won't be too long before guide dogs find a match for you, it took them 6 months to match me with Tasmin, although it did take two of our volunteers 12 months but the time goes really quickly.....Tasmin and myself have travelled to Stafford today by train for a meeting (I had to take the minutes) we got caught in the rain and arrived like drowned rats lol. If you are thinking of volunteering take a look at the RNIB website for volunteering roles, we have lots of volunteers that support the Team in Stoke on Trent in different roles, maybe something to think about for the future? Guide Dogs also have volunteers. Better go and get some tea as I want an early night, I look forward to hearing from you....take care Sharon

Posted 7 July 2015 6:36pm (20 months ago)
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Christine G says

Do you know by any chance if you have a branch in Scotland? cannot find one myself...Christine

Posted 15 July 2015 11:50am (20 months ago)
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Sharon says

Hi Christine

I hope you are well, just taken a look for an Action office in Scotland there isn't one but there is a resource centre as I've met some people who work there, I'll make a few calls tomorrow and find out, is there an RNIB centre/office in your area? as we do work together.....

Posted 15 July 2015 5:28pm (20 months ago)
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Christine G says

Thanks Sharon. I attend Fife Society For the Blind who have an RNIB at the back but it is for Children I was told.

Posted 15 July 2015 5:59pm (20 months ago)
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Sharon says

Hi Christine I'd give the RNIB a call and ask if that's right, the guys I met worked in the resource centre and as far as I know its open to all ages 0303 123 9999...

Posted 16 July 2015 6:16pm (20 months ago)
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Lee Partridge says

Hi im Lee from Bristol,been a Type 1 Diabetic for 36 years,over the last 8 years ive had problems with my sight...willing to meet others..,

Posted 22 July 2015 1:47am (20 months ago)
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Sharon says

Hi Lee I hope you are well, welcome to Connect, so what do you do in Bristol?

Posted 22 July 2015 6:23pm (20 months ago)
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Sharon says

Hi everyone just thought id pop in to ask how everyone is doing? What's everyone up to?

Posted 29 July 2015 5:53pm (19 months ago)
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Neil says

Hi Sharon. I guess some of us are looking for summer after the washout of last weekend. I got soaked last Friday! Hopefully better weather for August.

Posted 30 July 2015 4:51pm (19 months ago)
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Sharon says

Hi Neil, great to hear from you yes it was wet and its been really cold this week, I do hope it picks up for September as I have a family holiday will be taking winter woollies not my costume .......

Posted 30 July 2015 5:54pm (19 months ago)
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Emma says

Hi everyone, I was diagnosed with type 2 diabetes in my twenties and I was diagnosed with retinitis pigmentosa in October of last year. there is a strong history of diabetes in my family but no one actually had RP apart from me so am still trying to figure out where that one came from!

Posted 1 August 2015 3:23pm (19 months ago)
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Sharon says

Hi Emma, I have a mix of eye conditions starting with diabetes retinopathy, detached retina, macular degeneration and now cataracts I suppose having a long term health condition brings about lots of different complications for lots of us, researching can be very interesting, I have friends with RP we often chat about the differences in our vision it can be quite an eye opener (excuse the pun).......regards Sharon

Posted 1 August 2015 4:49pm (19 months ago)
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Emma says

Hi sharon, I think cataracts are becoming an epidemic! lol, it was actually at a pre assessment to have my cataracts removed that the RP was diagnosed.

Posted 2 August 2015 10:43am (19 months ago)
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Sharon says

Hi Emma, your comment did make me chuckle about epidemic on cataracts.......if its not one thing its another lol have a great Sunday

Posted 2 August 2015 1:38pm (19 months ago)
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Emma says

hi Sharon, well let's face it who wouldn't choose cataracts over ebola? lol

Posted 2 August 2015 4:36pm (19 months ago)
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Sharon says

Lol Emma, how are you doing?

Posted 5 August 2015 10:04pm (19 months ago)
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Emma says

I'm doing good thanks Sharon! how is everything with you?

Posted 6 August 2015 10:26am (19 months ago)
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Geoff says

Hi Sharon, i was diagnosed diabetic at 3 years old and am now 57, i have have had all the complications of long term diabetic. Lost one eye at work yet still managed to hold on to my job as head furnace man at local foundry, but this work stopped after heart problems. This was followed by kidney failure and 3 years of dialysis, if young diabetics think injecting is bad try a dialysis needle they are big. Anyway got my first kidney transplant which lasted four year, resulting in more dialysis. My sight at this time was ok in my remaining eye after lots of laser treatment, but started to deteriorate to the point of having to stop driving. One day i was asked to attend The Freeman hospital to see the kidney specialist, who asked if i would volunteer for a double transplant pancreas and kidney. After 5 seconds of thinking about it i agreed to it. I was the third attempt they were going to try the other two having failed, can you imagine coming round after a week of not knowing who i was and been told it had worked that was 10 year ago and am still insulin free. I still suffer from diabetic neuropathy and diabetic retinopathy, am now registered partly sighted and struggling to come to terms with it. But at the end of the day i am still here, yes live can be cruel but never give up hope of a total cure no matter what life throws at us. Respect Geoff

Posted 27 August 2015 10:12pm (18 months ago)
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Sharon says

Hi Emma

I'm good thanks, got today off so I have a long weekend bliss.....spent the day cleaning and moving my lounge around I was getting bored with how it was set up.....amazing what you find under your settee lol

Posted 28 August 2015 4:47pm (18 months ago)
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Sharon says

Hi Geoff, I'm determined not to let diabetes get me in the end, I constantly campaign for better awareness and care, I think the professionals miss the point its catching it before it gets you.......my son is also type 1 since he was 8 hes now 24 and been for an appointment today with the specialist nurse its taken me two years to get the GP to refer him as his care should come from the specialist nurse not a GP nurse who knows nothing about type 1.......he knows the consequences.....he sees me everyday ...bless...

Posted 28 August 2015 4:51pm (18 months ago)
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Ray44 says

Hi, I've been type 1 diabetic since the age of 13 after a nasty case of chickenpox! My blood sugars have been really badly controlled throughout this time - now 45! due to this I ended up with nephrotic syndrome which eventually ended up with end stage renal failure, I've had a year of haemodialysis during this time I had several bouts of septicaemia whilst also having diabetic retinopathy ,I've lost an eye and can't see too much out the other one! Luckily I have received a double transplant (kidney and pancreas) and all is going ok at the moment.

If there was one piece of advice I could offer a teenager affected by type 1 diabetes it would be to do as your told by the diabetes clinic because you don't want to end up in this state , purely because as a kid you think you know it all like I did!!

Posted 18 September 2015 11:37am (18 months ago)
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Sharon says

Hi Ray

Your comment on the bad bought of chicken pox hit home with me as my son also had them aged 7 then a year later he got type 1.....I have always researched behind the many causes....looking for answers.....even though I also have type 1 for 30 years.....there was some research that indicated it was related to stomach enzymes which I found interesting.....when you live with the condition and get complications I think we all look for a reason behind the original diagnosis....

I am going through the process of pancreas transplant at the moment, I too have kidney problems but at the moment I am running at 50% it was 30% last year (I don't know what ive done to reverse it) your comments are true for the young they do think they are infallible my son at 24 still believes this, perhaps talks to young people would in some way make them realise what the consequences might be in the future.....thanks for your honesty its so refreshing i'll make sure my son reads this, thank you.....

Posted 18 September 2015 6:16pm (18 months ago)
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Sharon says

Hi and how is everyone doing, recently had to change my insulin doses so hypos are hitting me left right and centre, these also affect my vision, have you ever tried to open a bottle of lucozade with numb hands, in the middle of a bad hypo when your bit of vision just goes and you cant do a glucose test at the moment I carry lucozade everywhere........is anyone else having difficulties managing especially with sight loss??

Posted 12 October 2015 10:24am (17 months ago)
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Geoff says

Hi Sharon, your problems bring back some bad memories. Years ago when they changed me to synthetic insulin, used to have hypo's without no feeling of one coming on. Lost job through that driving a 50 ton dumper truck, luckily they happened when i was not driving. My sight loss is giving me a lot of grieve at the mo, have always been used to walking alone for miles but that has had to stop. Been housebound is causing me to have depression (dark thoughts) on top of other problems. Having been diabetic for 45 years till double transplant, with made life great for 10 years, but neuropathy in feet and retinal retinal neuropathy still continue. Sight loss is a big worry for anyone but trying to deal with it is another matter, the only advise i could give you is to use a cyclists drink bottle with the pull up to drink top so if you having hypo you can open it with your teeth. Hope this helps respect Geoff

Posted 12 October 2015 12:29pm (17 months ago)
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Sharon says

Hi Hawkeye

I am now splitting my Deguladec even though its supposed to last 36 hours, the long acting is the issue as I had perfect control all day until 8pm, Im beginning to question am I sleep walking and raiding the fridge at night.........frustrated and living on Lucozade hey ho hum......on the list for the pancreas transplant another hey ho hum.......have a great weekend

Posted 16 October 2015 3:37pm (17 months ago)
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BernieW says

Hi I just wanted to say hi! And Wow I have found others in my situation at last! I have diabetes type 1 for 19 years . I had laser in 2010 then started to lose sight in 2011. ATM have had 40 injections ( 20 in each eye ) of avastin/ lucentis. Now I have OHT and am to have an iridotomy in January I am petrified about this surgery. I have cateracts 2 both nuclear and sub capsular. I have maculopathyand and non preliferative retinopathy. I am unemployed I was a teacher for 20 years a job I absolutely loved. Now I depend on benefits. Not yet registered as RE 6/24 but left 6/60. But have lots of contrast and double vision issues too. Great to read the posts on here thanks for posting really interesting.

Posted 7 December 2015 5:29pm (15 months ago)
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Sharon says

Hi BernieW and welcome to Connect, reading your story was like reading my own, many thanks for sharing and I am so chuffed that you don't feel like the only one who is going through this at the moment. I look forward to connecting with you (excuse the pun lol) in the future.......Kindest Regards Sharon

Posted 8 December 2015 5:20pm (15 months ago)
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Alison Murray says

Hi I also have wanted to meet others with diabetic retionopathy. I have had diabetes for 29 years and started to have kidney problems in 2004. I have had laser surgery and vitreous wash outs. I am registered sight impaired. I still struggle with my diabetes but have recently got the freestyle libre glucose monitor. This has changed my life. I waited a year and a half on their waiting list via their website. It costs about £100 every 4 weeks. I never realised that my blood sugars rise as soon as I wake up and as I normally skip breakfast this made things worse. But with this monitor I can correct and keep a good track on it. I was wondering whether anyone was on an insulin pump as I am considering changing from injections but I am a little unsure.

Posted 21 January 2016 8:07am (13 months ago)
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BernieW says

Hi there I have diabetes and use a pump. I am on my second pump now so therefore had one for over 4 years it is great and would not go back to MDI ever again happy for you to email me with questions if u can get my email address not sure if allowed to post it on here

Posted 21 January 2016 10:15am (13 months ago)
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Sharon says

Hi Alison and Bernie, I had been a pump users for 10 years then changed back to local service as couldn't travel due to sight loss and other issues, when my last pump ended life I found out my area don't fund old users and I would have to go back to the beginning, I needed help there and then, to cut a long story short after three years of poor control I am now on Tresiba long acting 22 am and 10 units pm its a 36 hour long acting insulin but I found splitting the dose at night far better works along with my fast acting Novorapid I take doses to suit what I eat as normal, my bloods run at 3.5 to 6.0 every morning Lucozade to hand when required, its been a lot of fine tuning but I got there in the end, pumps are fab once you are trained to use them.....its all individual I was put on Tresiba due to low kidney function now its back to 50% so somethings going right I love the fact I can eat when I want to within certain times of course....

Posted 22 January 2016 11:12am (13 months ago)
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Lisadyer1994 says

Hi Sharon I have diabetes type 1 and I am registered severely sighted/blind I find it difficult at time when doing basic stuff like reading contents on food oackeging but I use magnification equipment which really helps I have recently got a new phone designed for visually impared people and it can take a picture of an object Nd tell u what it says

Posted 28 January 2016 7:43pm (13 months ago)
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Sharon says

Hi Lisa

that's brill, I too use mags at home to read packages its so annoying when large organisations and companies just don't think about font size or colour, my kids bought me a mobile for my birthday last November its good but I only use it to text or call I do have speech on it too, so how do you cope with your diabetes, injections insulin doses?

Posted 26 February 2016 7:22pm (12 months ago)
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Alison Murray says

Hi Lisa, I have mentioned to a RNIB regional canpaign organiser that I think RNIB and Action should campaign for the carb amount to be labelled on the front and not in tiny writing. I this would appel to both types of diabetes and those with a visual impairment, children and the elderely. What do you guys think?

Posted 27 February 2016 5:46pm (12 months ago)
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Sharon says

My son is 25 had type 1 diabetes since 8 years old, he is currently on his second carb counting course he received his results my his diabetic eye screening he has the start of back ground retinopathy his attitude was it will go away.....but he knows that's how I started with my sight loss at 40.....we spoke I said you have had diabetes longer than me by the time you reach 40 do you ant to end up like me........more support is needed for the young growing up with diabetes my son was lucky to be educated but it still dosnt say he wont get complications of such a chronic condition.......RNIB/Action should get together with Diabetes UK and work together as diabetes will be in epidemic proportions by 2020 for the old and young........the labels on foods an excellent idea as I know he checks what he buys.......large print would be great

Posted 31 March 2016 6:09pm (11 months ago)
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Geoff says

Hi Sharon hope you are well the young of today need to be efucated on what can happen in later life if they dont look after themselves, i was 40 when things went boobs up big time kids should be shown and told about all the things to expect in later life if they dont. i can remember showinf kids at a talk a dialysis needle and my fistula some burst into tears with shock. More needs to be done to tell them about all the problems they will face in future life hopefully it might just work on some'

Posted 1 April 2016 2:20pm (11 months ago)
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Sharon says

Hi Geof I totally agree with your comments, when your young you don't think about the future its a live for today attitude, but educating would have to be done softly not a scare tactic, its facilitating and hopefully making people think, maybe a trial of the Sim specks would give an idea of sight loss as when worn they imitate sight loss........working together with the diabetes teams would be a massive steps forward......

Posted 3 April 2016 10:41am (11 months ago)
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Sharon says

Hi guys, how is everyone doing on this forum, where are you at, has anyone attended the Living with Sight Loss Courses, if so what did you think, is there anything that wasn't covered you might like covering? Is anyone using assistive technology? if so what and hows it going? Any benefit or employment issues?........

Posted 3 April 2016 10:44am (11 months ago)
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Neil says

Hi Sharon I'm okay thank you. How are you - keeping your insulin under control at the moment? Funny you say where are you at as it makes me think of the recent Lloyds bank advert narrated by Julie Waters with the phrase 'For the Journey'! Anyway I digress. I have done a Finding Your Feet course about a year ago so what is difference between this and a Living With Sight Loss one? Found the course most useful in that it reaffirmed most of the stuff that I knew or had found out already. I only wish I had done one earlier. One of the benefits I found is getting together and discussing your sight loss or condition as a group.

Posted 3 April 2016 2:17pm (11 months ago)
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Sharon says

Hi Neil I am great thanks, went through a bit of a time in November Tasmin was retired due to the incident on the bus she just refused to travel by bus anymore, she is now retired with my mum and dad next door, winter was a nightmare without her but went back to the cane still managed to get to work, but I was a little grumpy for a while and felt lost and isolated didn't go out much at all only for work, thank god for work is all I can say......I now have a new guide dog called Genie shes blonde a proper minx lol first week back from guide dog training last week and back to it head held high its amazing how much you miss when your used to travelling with a GD they are the BMW of sight loss, our team is delivering a Living with Sight Loss Course very soon all the attendees say how great they are, they love the social aspect and talking to others with sight loss......great to hear from you take care Kindest Regards Sharon

Posted 3 April 2016 3:31pm (11 months ago)
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Alison Murray says

Hi everyone. I have done a couple of courses that were more employment . The henshaws course included computing with supernova and confidence building. I tnink a living with sight loss course would have been good earlier. I also think meeting people with the same condition and chatting would have been helpful at coping too.

Posted 3 April 2016 6:06pm (11 months ago)
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Christine G says

Hello again. Been a while since I last spoke on here. I do read the email notifications but gave up posting .

Improvements I have had since last time are a brand new iphone6 funded by my blind society. I love siri and the talking gps and the Be My Eyes app. The light and magnifier are brilliant. I also got funded for a pair of hands free multilens glasses. Fife society for the Blind are the only UK sellers of these. Being able to text and read without a magnigier in my mouth or doing acrobatics is brilliant. They are tinted, and x 30 mag. I hold things very close to my eyes and unlike magnifiers, I can read fluently, not just one word at a time and it appears as normal print. I get eye strain so can't use for long but what a difference they do make. I have just applied for PIP and had a Sight Support Worker fill out the forms for me so fingers are crossed. Pleased to say I have had no further problems with the retinopathy but maculopathy has worsened. I am working with profesionals on a white paper with the Scottish Government for the See Hear part of health and Social Services integration. As it is user led, I feel I am doing something. That's my update, nice to catch up again

Posted 3 April 2016 6:50pm (11 months ago)
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Sharon says

Hi Christine and Alison wow seems like you are both very active and moving forwards well done to you, quick question why did you stop posting? I go in regularly and miss peoples comments and what they are up to.....great to here from you ladies, quick update at my end I have a new guide dog Genie proper minx we've just done another walk with our trainer 2 hours walking I'm tired my feet are sore Genie is snoozing after having her tea......she does make me smile x

Posted 4 April 2016 5:34pm (11 months ago)
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Sharon says

Quick question, we have the fab living with sight loss courses available through the country.....what do people think about introducing a course on diabetes? Just an idea that's been playing around in my head for a while, if so what would you like to see in the program?? I hope everyone is enjoying this gret weather at the moment.

Posted 9 May 2016 6:16pm (10 months ago)
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Neil says

Hi Sharon,

I hope I get what you are saying - that you want there to be more awareness and support of diabetes through a course? But isn't that slightly outside the scope of RNIB/Action for Blind and more within the scope of a Diabetes charity? Unless it specifically has the sight loss angle of Diabetic Retinopathy?

And can't existing Living with sight loss (or Finding Your Feet) courses be tailored to included more on Diabetic Retinopahty if there is a demand from attendees?

Maybe if you've got the time to check sources of information on Diabetic Retinopathy/Diabetes with the RNIB/Action and Diabetes charities to at least create some sort of post on here, factsheet (if there isn't one) or whatever to start with?

Totally agree with you though more awareness and support does need to be raised with both types of Diabetes on the rise. Very debatable if I'm living in one of the highest density areas of diabetic cases.

Weather was fantastic last week. Spring/summer has finally unsprung.

Posted 10 May 2016 10:30am (10 months ago)
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Sharon says

Hi Neil, there is definitely a demand for a diabetes and sight loss course more and more clients are coming to us with diabetes retinopathy and according to Diabetes UK, diabetes will be at epidemic proportions by 2020, a preventive course for getting eye disease related to diabetes would be brilliant but sadly we meet people whos eyes have become affected...........there are carb counting courses through health care teams locally and through organizations that provide equipment for people with diabetes, too many times I have given presentation at the LWSL courses and they say I wished id known that before ref diabetes diet and care......I Have checked sources, I use to be a Diabetes educator many years ago and wrote and delivered a course that had brilliant results........I just wanted to know what other people thought?? So thought I would start on here first......weather changed today it rained...no coat...good job I had a brolly.........

Posted 10 May 2016 6:06pm (10 months ago)
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Hanaqali says

Hi Sharon , my name is Hana. I'm 20 and I have had diabetes type 2 for three years now. I eat a lot of fruit and vegetables but I don't do much exercise. My diabetes is well controlled and I take metformin twice a day which has helped me lose a lot of weight. I do still eat junk food but I put in moderate and limit how much I eat even though I do have a little treat every day . Also I was lost my sight five months ago but I am still waiting for a diagnosis from the doctors. So I'm blind because I have no sight what so ever.If anyone has any tips of how to lose weight with having diabetes let me know please.

Posted 22 May 2016 3:06pm (9 months ago)
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Sharon says

Hi Hana, hello and welcome to Connect, you seem to be doing ok on your medication having good control, maybe you need to cut down on the fruit a little as it does contain natural sugar which is still processed in the body, grapes in large quantities are quite bad as they do contain more natural sugar than say an under ripe banana, metformin can give people tummy troubles as it does not go well with some salad foods like lettuce, I think its what you add to food that causes weight gain, wholesome food ike a cooked dinner is good baring in mind your portion size if you load a plate up you end up eating it all, food love in fat and sugar are brilliant but its everything in moderation, a gentle walk for 30 minutes a day is good exercise or do some exercise in a chair using a weight like two tins of soup, how long have you got to ait to see an eye consultant for a diagnosis about your sight loss? Did you start to notice changes in your vision before you lost your sight? Do you see a diabetic specialist? the carb counting courses are brilliant they should have them in your area ask at your GP's and let me know how you go on.......

Posted 22 May 2016 3:46pm (9 months ago)
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Christine G says

It seems to me reading these posts that what is available varies greatly from area to area. I have never heard of a Living with Sight Loss course, Counting Carbs or anything similar. Also regarding retinal screening. Can't help wondering what the point is? I had mine done annuallym then suddenly told there where changes noticed and it would be done 6 monthly. This happened 4 times then hey presto, I had a massive retinal bleed and the start of my journey through sight loss. Why was no one telling me what the changes were and what I could do about it? It seems to happen a lot as I hear from others affected. My latest journey was my DLA to PIP claim. I had to travel quite a way from my town, luckily taken by my Sight Support Worker. Just in the throws of waiting to hear and stressing over the whole procedure. Began wearing my hearing aid a week ago and now struggling with traffic noise etc. Being louder, I think it's closer and struggle with roads etc. Hope everyone is doing well and not struggling too much

Posted 22 May 2016 5:12pm (9 months ago)
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Neil says

Hi Hanaquali and welcome. I am not diabetic myself, but know of people who are. I think it is more of a challenge to manage your weight particularly if you are blind as it can depend on how mobile you are. Hopefully if you get your diagnosis you can then proceed on to some long white cane training if needed. It is confidence in getting out and about that can be difficult for some depending on what sight you have left especially if it is on your own.

Perhaps getting a sighted relative or friend to walk around with you if you need any help like crossing roads or keeping on pavements. Or get a lift to your nearest park. I've started trying to walk more myself but can't say I've lost much weight. So possibly the only way is to join a gym or take up something like swimming if you're not particularly sporty. You could try looking at the www.blindspots.org.uk

Posted 22 May 2016 7:59pm (9 months ago)
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Sharon says

Hi Christine, great to hear from you sorry to hear your having problems with your hearing aides, my dad wears two and hes always complaining about back ground noise, yes your right with regards retinal detachments I didn't have a clue about them until it happened to me after having some laser treatment for background retinopathy, that was a frightening time I just sneezed and my vision just went, they stitched it back but it was creased so my vision is really bad, Ive been told it wont happen to my other eye as they have done that much laser treatment to it its permanently stuck but the vision is poor in that eye too......I am supposed to go or checks every three months not had an appointment for over 12 months I think its disgusting so will be complaining very soon....the care just isn't there should be the motto when it comes to vision support from the medical professionals.......Action do Living with Sight Loss Courses get in touch with your local team your carer can go to they are brilliant, carb counting courses are done by diabetic specialist teams so speak to your nurse, my sons just gone on one and he basically knows what to look for and I'm chuffed to say as hes only 25 and has some background retinopathy hes gaining control of his condition again, I would hate for him to end up like me when hes 40......I wish you well and hope we can catch up soon kindest regards Sharon

Posted 23 May 2016 8:30pm (9 months ago)
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Christine G says

Sharon if you recall I live in Scotland and have no Action for The Blind. Nearest RNIB is some miles away in Edinburgh. Our Society does things differently as in you need to ask for any help you think may be available and then it's a step at a time. A lot of staff are part time so trying to fit things in around hospital, doctors and daily life is tough. I am waiting on a call tomorrow morning from our tech person, also part time. I am wanting to see if a synaptic tablet would help me. I would be interested to hear anyone else that uses this, on their opinion. I am just about to embark on a peer to peer befriending scheme where I can maybe point out helpful suggestions and the way around the system to someone who is newly blind. truly the blind leading the blind :)

Posted 23 May 2016 10:51pm (9 months ago)
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Neil says

Christine. It is similar for me. Although I have an Action For Blind centre it is a good few miles away and ditto for my nearest RNIB centre. My local society is similar too. And how do you know what help to ask for if you don't necessarily know or understand what help is available or what questions to ask for that help! I was interested in getting one of my local clubs to buy a synaptic tablet for training and demonstration purposes for other people. I got no response from asking this question. I've seen a quick demo of a synaptic smartphone from a user and basically it changes the interface to a scrolling list to pick what app you want to use out of a set list - make phone call, play BBC iPlayer, send email, etc. Maybe easier to use than a lot of smaller individual icons.

Best of luck with your peer to peer befriending scheme, but can the blind lead the blind to water and force them to drink or do both end up in the water and who knows what happens to the horses! But yes some good people point out helpful suggestions to me, so I'm trying more to help myself for a change.

Posted 24 May 2016 10:18am (9 months ago)
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Christine G says

Hi Neil. I have noticed a big rise in this blind leading the blind scenario recently. All dreamt up obviously by sighted people who know best. (sarcasm) . I think a lack of funding and the huge numbers of sight loss means it's a cheaper way to get help out there. I have been working with my local Council and the Scottish Government on their white paper health and Social care integration for a while now. The consultations etc for the See Hear part was User led. Ended up as the purse string holder decided on funding to employ a person, high salary, to recruit sight loss volunteers to advise newly diagnosed about their care pathway and how to access everything. Something I still have not found out myself. Not all people wish to remain independent, or cope alone and forcing this issue means a lot will fall early. I have seen a video about the synaptic on tablet and am keen to play with one and see if it is for me. I use an iPhone which is brilliant, but siri or voice is not reliable. If anywhere where other people are talking it does not understand and is frustrating to say the least. Until I can actually have a play around for myself I do not fully know if suitable. meanwhile I will try not to think Horses when I start befriending.

Posted 24 May 2016 10:40am (9 months ago)
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BernieW says

Hi there I have type 1 diabetes dx 1996 send various complications including DMO cateracts and now Gluacoma . Have been reading the posts re living with Sight loss course and synaptic so thought I would add something in.

I went to the London one day living with Sigjt loss course and it was a complete waste of time AND money spent in travel. It was only relevant to those living in London as they spoke of things only available for London residents I had explained before attendence where I lived before hand. As far as synaptic goes I know of it because we have a communication class run by sighted volunteers on a Friday and people are using it there I am learning Braille and I love learning it.

one person there was so impressed by synaptic on the iPad there they now have their own phone with synaptic on it. I am very lucky in my area support is brilliant and my rehab officer was fantastic visiting and phoning often so I suppose it depends also where u live

Posted 24 May 2016 3:25pm (9 months ago)
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