Living with Visual Impairment: “I Can’t See My Child’s Face at All”

I was seen by an optometrist in February 2020 and they said I had diabetic changes in my eyes so they had to refer me. A few days later I received a letter saying that I would be seen in 6-12 weeks. Then Covid happened and all eye care services were suspended.

I was a nurse in Edinburgh at the time, so I was very busy myself, constantly on my feet due to the pandemic. I left in September and went for breakfast. I looked at my plate and it seemed to me that there were flies everywhere. I asked my partner, “What’s wrong with my food?” He said it’s all right.

There were black dots everywhere, which I thought were flies. Luckily, we knew a medical photographer who showed it to me that day. They told me to see an ophthalmologist as soon as possible. They saw me a week later. The first thing she said to me when she looked into my eyes was, “You should have been here by now.”

Well, that would be me if the pandemic hadn’t shut down all services. From September to December, I was treated with a laser, and in mid-December, my vision began to deteriorate. I was seen in the emergency room after hours between Christmas and New Years and sent to an ophthalmologist in Edinburgh who performed extensive laser surgery weekly in January.

It got so bad that I was bleeding heavily in my eyes, from which I couldn’t see. At the time, my eyesight was very poor. I had to get sick at work.

In March 2021, I had a vitrectomy in my right eye, a type of eye surgery to treat problems with the retina and the vitreous humor, the clear gel that fills the space between the lens and the retina of the eyeball. This basically involved flushing out all the eyes, removing any extra blood vessels, and hoping that the vision would return.

Unfortunately, it did not happen. I can’t see with my right eye at all. They think it happened because they weren’t noticed and they weren’t operated on fast enough. My too rapid drop in blood sugar probably also played a role as it was also the cause of the eye complications in the first place.

They continued laser treatment of my left eye from March to October. Since the condition of my right eye was getting worse, I had a vitrectomy in my left eye as well. Unfortunately, I had a massive hemorrhage in my left eye and was completely blind for the whole of October. I didn’t see anything and couldn’t do anything. It was quite a traumatic time.

They said that the bleeding would go away on its own in 4-6 weeks, and, fortunately, it did – I did not need another operation. It was a terrible experience. I had to rely on the fact that everyone who came out would actually do something. My partner’s employers were very understanding and he was able to take paid time off to help me in October which was great.

After that, my vision began to slowly improve. I was very fuzzy and then they said they would play by ear. Last January, I was told that I was “severely visually impaired” or blind, if you want to call it what most people do. I am currently awaiting registration as last year they wanted to do more research before registering me. It was a little scary. I knew it was bad, but the realization… came as a shock. I am 33 years old.

I contacted The Macular Society because last summer I was diagnosed with macular ischemia, a common complication of diabetic retinopathy that can lead to progressive and permanent vision loss. This is all the result of my DMO [diabetic macular oedema – the accumulation of excess fluid in the extracellular space within the retina in the macular area]. And the charity was really good; they really supported me. I’m in a group where once a month we have a Zoom group chat for people with DMO. We have a nice little community. We are on WhatsApp and keep in touch with everyone. It’s really good to have this extra support network.

In June last year, we found out that I was pregnant, which was completely unexpected. Because of my diabetes many years ago, I was told that I might not be able to have children, and then we learned about my eyes. I just didn’t want them to get worse because they say DMO can affect your vision even more if you get pregnant.

I needed to keep in touch with my ophthalmologist and diabetologist and they just said that if we wanted to continue they would support us and the support was great. We received the baby on December 30th. The midwife was great but she just didn’t know how best to support her as the macular society already said I should get social work support from various medical professionals when the baby comes as it was quite a traumatic time because that’s what what it’s like to be a mother for the first time. Add to that the loss of face, it’s a mind-boggling time.

The health worker just referred me for further support during the week my partner is at work as the midwives were not aware of any support I could give myself during the birth of my baby. Hope this happens in the near future. The Macular Society was amazing, so supportive. Nothing at all, and they are there immediately.

Over the past few months, it has been such an ordeal that I couldn’t do simple things like changing diapers so easily. It’s hard, but I can do it. Fortunately, there I had support that helped me deal with such things.

I can only read 36 font and only see hand movements in front of me. I can’t see a meter in front of me. I don’t see the expression on my child’s face at all. I can tell when her eyes are open and closed, but that’s about it. With all the physical difficulties – changing diapers, emptying the bottle – 100 percent the biggest problem was that she couldn’t see her properly. I guess the little things you take for granted. My husband’s support has also been incredible.

Doctors look to the future with hope after they ran some tests last year to see if there is any function at all in my eyes, and if there is some form of function. You just don’t know how much. There may be a neurological disorder in addition to DMO stopping what is still seeing me. It’s in the air right now.

When I was pregnant, they said there was hope, if it was something neurological, that my vision would come back a little when the baby was born. Saying it and giving a little hope is good, but when it doesn’t, it just knocks you off your feet. It was a little discouraging.

When I went to my diabetes specialist when all these changes were in progress, I was told to try to lower my blood sugar as soon as possible. But, according to the ophthalmologist, it did not help my eyes either. If someone needs to lower their blood sugar, they should do it gradually, not quickly, as this can lead to further complications. Unfortunately, we did not know this at the time. Perhaps something has changed, but there are no guarantees.

It completely changed my outlook on life. I try to enjoy life as much as possible. There are restrictions that mean I can’t just go out and drive or use convenient transportation. But I just try to do as much as possible and enjoy life as much as possible.

For more information about DMO and related terms, see Macula Society at https://www.macularsociety.org/