Challenges of sight loss

[Flower]

I've lived with partial sight for about 25 years now. I lost sight in both eyes for about 1 year after proliferative retinopathy did its worst, I was diagnosed late - this was pre annual retinal screening, digital photos, eye injections etc.

I have some sight in the centre of my right eye, its a mis-shapen space I see through surrounded by a sea of flickering and swirling greyness and thousands of flashing lights - they're distress signals from my oxygen deprived retinas after maximum laser and they never calm down. Even when I close my eyes I see fluorescent sparkling lights everywhere. My left eye is completely blind.

I have a way I try to cope, most people don't know I have sight loss. I carry a torch everywhere as I struggle to see detail in low light & bright sunshine and I'm completely blind in the dark. I plan for any potential challenges if I'm going somewhere I don't know, looking at street view and the layout of buildings, working out what the route will be, where bus stops are. I have to be home before the light starts to fade as I can't see in the gloom and I follow walls along the edge of buildings for a guide as in open spaces I get really dizzy and disorientated. Having to use crutches as I have my leg in a cast long term with Charcot foot helps me feel where stair and kerb edges are and to feel if areas are flat or sloping.

I write the colour of my clothes in the labels as I can't tell colour apart from black, white and red. I don't have perspective with only one eye and can't judge distance. I either look up and trip over or look down and walk into things - it's a challenge!

I do have to laugh at myself sometimes, I often speak to shop mannequins as I see the shape of a person - my approch nowadays is to ask if they work in the shop before asking a mannequin for help. I pretend I haven't got my contact lenses in if someone asks me for a bus number or for help with a timetable. I still can't just say I'm sorry I can't see very well.

I excelled myself today. Walking home from the bus stop in bright sunshine, a cyclist stopped by me and said "Hi nice to see you". I thought the voice sounded familiar but I couldn't see much detail as sunshine bleaches out detail for me. I said "Do I know you"? thinking they'd mistaken me for someone else. It was my brother in law ! he thought I was joking - unfortunately not!

Retinal screening is so vital and there is so much that can be done to limit damage. Hopefully sight loss from diabetic retinopathy will become a thing of the past. I really hope so.

 

[rebrascora]

Really brave of you to share your challenges with us Flower. I am sure that it can't be easy at all and I hope it acts as motivation and inspiration to others. I really admire your spirit and determination to push through the difficulties you face and try to lead as normal a life as you are able still. I take my hat off to you!

I am ashamed to say that I moan about having to put glasses on to see stuff that I used to be able to see easily before, when I had 20/20 vision. I will think of you next time I get exasperated about it and will consider how lucky I am that I can put glasses on and solve the problem instead of grumping about the fact that I need to use them. Sending (((HUGS)))

 

[helli]

Sorry to read about your trials @Flower.
I am glad you are able to laugh at yourself although your experience sounds scary to me.

It is important to share as it is so easy to become complacent.
I was diagnosed 20 years ago and told to expect complications after 8 to 10 years because everyone gets them. If it is inevitable, why both? Well, today I received the results on my last retinal screening: "no signs of diabetic eye disease".
I am so grateful to have been diagnosed at a time when this has always been available and, knowing from personal experience that the 8 to 10 years complication free is possible to at least double, I will make the most of the screening every year.

Thank you for sharing and good luck with the laughter and annoyances.

 

[Bloden]

Whenever we’ve met up in Bristol, it’s always amazed me how well you manage @Flower with such limited vision. You had me fooled at first! It takes a lot of courage to get out and about with any type of limitation - you really are an inspiration.

I had a letter last week telling me I’m low-risk and will be having a diabetic eye review every two years from now on, not annually. Hm, ok. I’ll get it done at my optician instead, and pay for it. 😳

 

[Flower]

Whenever we’ve met up in Bristol, it’s always amazed me how well you manage @Flower with such limited vision. You had me fooled at first! It takes a lot of courage to get out and about with any type of limitation - you really are an inspiration.

I had a letter last week telling me I’m low-risk and will be having a diabetic eye review every two years from now on, not annually. Hm, ok. I’ll get it done at my optician instead, and pay for it. 😳

Master of disguise! 😎

I would do the same and pay for an annual test @Bloden . Two years sounds a long time to me even with low risk.

 

[everydayupsanddowns]

Thank you so much for sharing your experiences @Flower - I am in awe of your honesty, candour, and also your spirit and stickability.

You are an inspiration!

 

[Eddy Edson]

Retinal screening is so vital and there is so much that can be done to limit damage. Hopefully sight loss from diabetic retinopathy will become a thing of the past. I really hope so.

You = total hero, @Flower !

I'm so grateful that anti-VEGF injections had been introduced by the time I developed diabetic macular oedema. They've worked brilliantly for me and I really feel like I've dodged a bullet.

Of course it would have been better if I'd actually gone to see a doctor when T2D symptoms first started & before the damage was done, but that would have been against my folkways ie "avoid seeing doctors because they might find something wrong with you".

 

[Flower]

I'm so grateful that anti-VEGF injections had been introduced by the time I developed diabetic macular oedema. They've worked brilliantly for me and I really feel like I've dodged a bullet.

So true @Eddy Edson very glad they have worked so well for you.

Anti-VEGF weren't around in the 1980's early 1990's when I was dealing with such aggressive retinopathy and maculopathy. The only option was laser and more laser until there was no functioning retina left in my left eye. It was devastating.

Having availabilty of such efficient treatments is fantastic.

 

[Deb_l]

Your story is truly inspiring and it’s a credit to you that you carry on your life as near to normal as you can.

I’ve been feeling a little sorry for myself the last few days because I’ve found out my diabetes has caused premature cataracts. I’ve got over my ‘pity party’ now though and your post has also helped me to realise that I could have experienced more damage to my eyes than I’m currently seeing.

Take care xx

 

[Flower]

Anything related to eyesight is frightening even more so with diabetes involved @Deb_I definitely not a pity party.

I had a cataract operation a couple of years ago and it went well despite me being beside myself with nerves and fear, I had sedation in the end.
The operation is done quickly and calmly, you can't see or watch what's going on which was my fear and the improvement to sight, light and colour afterwards is amazing. Best Wishes with it all.

 

[100cas]

@Flower a very well written and important post. I’m sure you have been through very tough times and it’s great to see how you’ve persevered and found new ways to live your life and do the things you want to do.

I find diabetes complications are often not spoken about as they can come with a feeling of shame or perceived judgement from others none of which should be the case. Your post is very inspiring to someone (me) who has numerous eye complication so thank you for posting it.

 

[wantonnoodle]

@Flower I know you say you've lived with partial sight for 25 years, but please don't struggle on alone.

My partner (non-diabetic) has a genetic eye condition that was late onset and his sight is failing; he's down to core central vision only, and like you cannot see in low light or the dark. Consequently he was certified as Severely Sight Impaired (used to be referred to as registered blind). With this, he reached out, through the ECLO (eye clinic liaison officer) at Manchester Eye hospital, and she helped direct him to the community team at the council. He was assigned a rehab officer, who came and did a full home assessment for any adaptations that may help, and also gave him training on how to use a long cane, which is a godsend in winter with the dark evenings, and gave him back some independence. His status as SSI also enabled him to apply for a blue badge for parking. While he obviously can't drive, this means that anyone he is with can park in a disabled bay, meaning he doesn't have to struggle across a carpark. He's also had loads of support from local charities for the blind.

I've told you all this, to try and point out that there is nothing to be ashamed of with sight loss. If you haven't already, find out if you can get a CVI - a certificate of visual impairment - this is the piece of paper that confirms if you are Sight impaired or Severely sight impaired. The low vision clinic at your local eye hospital should be able to issue one if you meet the criteria (it sounds like you do), or try asking your eye consultant about it (assuming you are under specialist care). This will then allow you to reach out and take advantage of a world of support out there that will make your life so much easier and will give you a much better quality of life. And please, let friends and family know. From experience with my partner, once people are aware, they will do so much to help you.

In short, if you can reach out for support, you will find that there is so much out there to help you, and will give you much more freedom. Please, don't struggle on alone.

 

[Flower]

@Flower a very well written and important post. I’m sure you have been through very tough times and it’s great to see how you’ve persevered and found new ways to live your life and do the things you want to do.

I find diabetes complications are often not spoken about as they can come with a feeling of shame or perceived judgement from others none of which should be the case. Your post is very inspiring to someone (me) who has numerous eye complication so thank you for posting i

Thank you @100cas I hope things are going as well as possible for you.

It is hard to speak or write about complications not only from my personal experience but also not wanting to cause upset and worry to others.

Things have changed and improved a lot over the years with far less judgement and that helps to reduce guilt. I've been in clinics where I was called naughty and non complicant because things had gone so wrong even though I was dealing with a Type 1 eating disorder & was in absolute turmoil. None of the damage I live with was deliberate self sabotage yet I was treated that way especially in the 1980's retina & diabetes clinics. It still impacts a lot on how I feel about things today.

I wrote the post because I kept laughing about not recognising my brother in law but in writing it I noticed how much I try to hide things and pretend everything is ok. Generally I am ok and upbeat but I shouldn't pretend things don't affect me or be ashamed that I do struggle in some situations. 🙂

 

[Flower]

@Flower I know you say you've lived with partial sight for 25 years, but please don't struggle on alone.

My partner (non-diabetic) has a genetic eye condition that was late onset and his sight is failing; he's down to core central vision only, and like you cannot see in low light or the dark. Consequently he was certified as Severely Sight Impaired (used to be referred to as registered blind). With this, he reached out, through the ECLO (eye clinic liaison officer) at Manchester Eye hospital, and she helped direct him to the community team at the council. He was assigned a rehab officer, who came and did a full home assessment for any adaptations that may help, and also gave him training on how to use a long cane, which is a godsend in winter with the dark evenings, and gave him back some independence. His status as SSI also enabled him to apply for a blue badge for parking. While he obviously can't drive, this means that anyone he is with can park in a disabled bay, meaning he doesn't have to struggle across a carpark. He's also had loads of support from local charities for the blind.

I've told you all this, to try and point out that there is nothing to be ashamed of with sight loss. If you haven't already, find out if you can get a CVI - a certificate of visual impairment - this is the piece of paper that confirms if you are Sight impaired or Severely sight impaired. The low vision clinic at your local eye hospital should be able to issue one if you meet the criteria (it sounds like you do), or try asking your eye consultant about it (assuming you are under specialist care). This will then allow you to reach out and take advantage of a world of support out there that will make your life so much easier and will give you a much better quality of life. And please, let friends and family know. From experience with my partner, once people are aware, they will do so much to help you.

In short, if you can reach out for support, you will find that there is so much out there to help you, and will give you much more freedom. Please, don't struggle on alone.

Thank you @wantonnoodle that is great information. It's good to hear your partner has been able to get good help and support.

I do go to a low vision clinic, contact lens clinic and retina clinic at the hospital so have been helped so much by the NHS. The low vision clinic has provided me with some great magnification lights and othe magnification equipment and also helped me with finding a machine to heat up indivdual cups of water so I don't need to lift and pour standard kettles after numerous nasty burns.

I do have a Blue badge although no driving licence/ or car anymore so my family and friends do find me quite useful sometimes! I do qualify for a CVI but haven't done anything about it for a few years as I'm managing ok.

I'm honestly not struggling on alone, getting enough sight back to be independent was the best day of my life and that utter relief and happiness keeps me going 🙂

 

[100cas]

Thank you @100cas I hope things are going as well as possible for you.

It is hard to speak or write about complications not only from my personal experience but also not wanting to cause upset and worry to others.

Things have changed and improved a lot over the years with far less judgement and that helps to reduce guilt. I've been in clinics where I was called naughty and non complicant because things had gone so wrong even though I was dealing with a Type 1 eating disorder & was in absolute turmoil. None of the damage I live with was deliberate self sabotage yet I was treated that way especially in the 1980's retina & diabetes clinics. It still impacts a lot on how I feel about things today.

I wrote the post because I kept laughing about not recognising my brother in law but in writing it I noticed how much I try to hide things and pretend everything is ok. Generally I am ok and upbeat but I shouldn't pretend things don't affect me or be ashamed that I do struggle in some situations. 🙂

Things are going well for me thank you, my eye issues came on very quickly - I went from background retinopathy to proliferative retinopathy in both eyes in the space of 3 months and had a really hard year of laser and 3 surgeries, I was being seen weekly and to be honest it was such a devastating time, but I am now 5 years on and actually had an eye check up at the hospital and they don’t want to see for me a year as my eyes are stable. So I really shouldn’t complain.

I really understand your comments about the comments from your healthcare team, I have experienced similar issues and felt a huge amount of judgement. I can remember waiting to see the consultant and I could hear him talking about me through the door saying “no one has this many issues” (implying that I was lying) I was probably 17 and that impacts me to this day sadly. Luckily as an adult I have the ability to seek out the help I need and advocate for myself. None of us asked for diabetes and it is not easy, in fact it’s realllly hard - I think (and hope) that bedside manner is changing and our healthcare professionals are beginning to understand diabetes more than just sugar and insulin.

I have to say I did giggle at your story about your brother in law and I think you have an excellent attitude. You are right though, it is ok to tell people when/ if you are having a hard time, it’s ok to not be ok ❤️