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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To be terrified of going blind from diabetes? Can anyone share positive stories?

10 replies

AbsentmindedWoman · 02/02/2020 18:30

Does anyone know of any blind or visually impaired people who have managed to retain a good level of independence?

Or know of what technologies can help with reading and writing in particular?

I am doing my best to stay calm but the thought of how vulnerable I would be is....I have no adequate words for this fear.

My diabetes has suddenly caused fucking macular oedema. There is treatment but no guarantees. My eye is blurred and it's affecting everything, and this is supposed to be mild - well if this is mild what the shitting fuck will it be like if it worsens? And if it's treated and the treatment works, that will be maintaining what vision is there so it may be blurred now forever for the rest of my life, I am only 35. And that's if things work.

FUCK.

OP posts:
NeverTwerkNaked · 02/02/2020 18:39

I did support work for someone who was severely visually impaired when we were both at university. He was able to get around with a stick and just had a settling on his phone screen so all the text was really large. He'd managed to get a place on a law degree and was doing really well (I only did the support work for a year).

Hope you get a better outcome than you fear. But there are great technological helps out there now.

AbsentmindedWoman · 02/02/2020 18:51

Thank you, that's fantastic that he was doing well at university, and exactly the kind of thing I'm hoping to hear about!

It really helps to hear stuff like that.

OP posts:
InglouriousBasterd · 02/02/2020 18:56

I’ve worked on some research into it and the treatment is really quite effective so - easier said than done I know! - try not to get ahead of yourself with the worry. They know how best to treat it Flowers

Earlgreyandcake · 02/02/2020 19:04

How well controlled is your diabetes? Type 1 or 2?

Bookbandconfusion · 02/02/2020 19:07

I have a good graduate job as a VI person and I know tons of VI people with a great quality of life who travel independently etc. There are tons of adaptations you can get and counselling to help you deal with it all. Why don't you give the rnib a call as a first step tomorrow? You probably have a local sight loss charity too (RNIB can identify these for you) and if you're lucky they might have a resource centre where you can go and look at equipment yourself.
Some stuff you may need can be expensive so you may need access to work or other grants to help out with financing.
Scary, yes but you can absolutely have a great quality of life. Do you have a partner, kids, other family/friends?

RememberNotToPost · 02/02/2020 19:14

I hope things work out ok for you, I can imagine that it must be very scary. As you asked for positive stories:

I have a friend who only has one eye, and only about 15% vision in it, so she is really quite severely visually impaired. This is following early childhood cancer, so she's functionally never known different.

She lives in a lovely home with her husband (who is also visually impaired, although not as severely as she is) and their toddler. She works part time as an activity coordinator for the elderly, having achieved the qualifications to do so with support from the college. Her phone and laptop have software to make text big enough to read, and she's able to do any household task. She can't drive, but she cycles, although not in unfamiliar areas. The house needs some work, and while they're getting professionals in for the complicated stuff, they're doing the simpler decorating jobs themselves, sometimes with help from friends.

Her husband works full time as an IT security consultant. His employer have set up his workstation with adapted software so he can read his screen properly, and provide him with train and taxi transport if he needs to travel to a client (his colleagues would normally drive).

They do almost everything other people would do by themselves. The only thing they frequently need help with is transport to unfamiliar places, because they can't drive and they can't read signs or directions on a train station or the front of a bus. They make that work with the use of taxis, or lifts from friends.

It's not always easy, because the world is of course set up for seeing people, and I don't want to pretend like it is - but really, my friends lead very ordinary, happy, and successful lives. It is absolutely possible.

Delurkernomore · 02/02/2020 19:14

I have a blind sibling, live totally independently, went to uni, work, travel (nationally and internationally). Uses a cane and has a guide dog. They take taxis a lot but other than that just a normal mid-20s person. Hopefully the treatment will work for you though, loosing your sight is an incredibly scary time xx

Itsjustmee · 02/02/2020 19:28

My dad has macular oedema from his diabetes
He’s been having regular monthly injections for around a year I think and this month and last month he didn’t need one as his eyesight was much better
They will continue to monitor his eyesight though
He’s 72

FabTab · 02/02/2020 19:31

I work with a VI man who is responsible for the day to day running of a £50m turnover organisation. He’s the best person I’ve seen doing this job by quite some way. He’s also a thoroughly rounded human being with a seemingly very happy home life.

Vanillaradio · 02/02/2020 19:33

My sympathies op, I have t1 diabetes and this is one of my greatest fears. I hope it goes well for you.
I have two blind colleagues. They do a professional job for which post qualifications are needed. Both have a sighted assistant and special software, with this they are able to do the same job as everyone else. One sits opposite me and he is and is treated like any other colleague. He lives alone and is very independent, takes a full part in socialising, travels alone etc. Of course it's not 100% easy for them but they have very full and successful lives.

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