I got seen at the optician in February 2020 and they said I had diabetic changes in my eyes, so they needed to refer me. A few days later I received a letter saying I’d get seen within 6-12 weeks. Then Covid happened and all eye services stopped.
I was a nurse in Edinburgh at that point so I was pretty busy myself, constantly on my feet dealing with the pandemic. I was off come September and went out for breakfast. I looked down at my plate and it looked like there were flies everywhere. I asked my partner, ‘What’s wrong with my food?’ He said nothing was wrong.
There were black dots everywhere, which I thought were flies. Luckily we knew someone in medical photography who got me seen that day. They said I needed to see an ophthalmologist as soon as possible. I was seen within a week. The first thing she said to me when she looked at my eyes was ‘you should have been here well before now’.
Well, I would have been, had it not been for the pandemic stopping all the services. I had laser treatment from September until December and then my sight started deteriorating in mid-December. I got seen out of hours in A&E between Christmas and New Year and sent to eye specialists in Edinburgh who carried out extensive weekly laser surgery during January.
It had got so bad I was getting massive bleeds in my eyes that I couldn’t see out of. My sight was really quite bad by that point in time. I had to go off sick at work.
By March 2021, I had a vitrectomy in my right eye – it’s a type of eye surgery used to treat problems of the eye’s retina and vitreous, the clear gel that fills the space between the lens and the retina of the eyeball. That was pretty much to flush all the eye out, take all the extra blood vessels out, and hope that the sight would start coming back.
Unfortunately, it didn’t. I have no sight in my right eye at all. They think it was due to not being seen quick enough, and also not getting the surgery quickly enough. My blood sugars lowering too quickly was probably a factor as well, as this was what also caused the eye complications in first place.
They continued laser treatment from March to October for my left eye. With the right eye deteriorating so badly, I had a vitrectomy in my left eye as well. Unfortunately, I ended up with a massive haemorrhage in my left eye and was completely blind for the whole of October. I couldn’t see or do anything at all. It was quite a traumatic time.
They said the haemorrhage could clear itself up in 4-6 weeks and luckily it did – I didn’t need further surgery. It was a frightening experience. I had to rely on everybody just to get out and about, to do anything really. My partner’s employers were so understanding and he was able to take October off, paid, to help me, which was amazing.
My sight slowly started playing up again after that. I was very blurry and then they said they would just play it by ear. In January last year I was told I was “severely sight impaired”, or blind if you want to call it, as most people do. I am now awaiting to be registered, as this as they wanted to do further investigations last year before registering me. That was a bit of a shock. I knew it was bad, but having that realisation… was a shock. I’m 33 years old.
I’d gotten in touch with The Macular Society because the summer before that I’d been diagnosed with macular ischemia, a common complication of diabetic retinopathy that can result in progressive and irreversible vision loss. This is all a 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’ve been really supportive. I’m part of a group where we have a Zoom group chat once a month for people with DMO. We’ve a nice wee community. We’re on WhatsApp and keep in touch with everybody. It’s really good just having that extra support network there.
Last June we found out I was pregnant, which was totally unexpected. With my diabetes I was told years ago that I might not be able to have kids, and then we found out about my eyes. I just didn’t want them to get any worse because they say the DMO can really affect your eyesight even more if you become pregnant.
I had to liaise with my eye doctor and my diabetic doctor, and they just said if we wanted to go ahead they would support us, and the support has been great. We had the little one on 30 December. The midwife was great, but they just didn’t know how best to support as The Macular Society had already said I should be getting support through social work, from different healthcare professionals when the wee one comes, because it’s a traumatic time enough as it is, being a first time mum. Then throw in the sight loss as well, it’s an overwhelming time.
The health visitor has just referred me, as the midwives were unaware of any support that could be offered to myself with having the baby, for further support during the week when my partner is at work. Hopefully that’ll happen in the next wee while. the Macular Society has been amazing, so so supportive. Anything at all and they are there within a heartbeat.
It’s just been such a challenge these last few months, not being able to do the simple things like changing nappies so easily. It’s difficult but I’m able to do it. Luckily, I’ve had support there guiding me through things like that.
I can read font size 36 and can only make out hand movement right in front of me. I can’t see a metre in front of me. I can’t make out my baby’s facial expressions at all. I can see when her eyes are open and shut but that’s pretty much it. For all the physical challenges – changing the nappies, doing the bottle – not being able to see her properly has been the biggest challenge, 100 per cent. The wee things you kind of take for granted, I think. The support from my husband as well has been incredible.
The doctors were quite hopeful about the future having done a couple of investigations last year to see if there was any function at all in my eyes, and there is some form of function. They’re just not sure how much. There could be a neurological disorder on top of the DMO, which is stopping what’s seeing me anymore. It’s up in the air in the moment.
When I was pregnant they said there’s hope, if it is a neurological thing, that my sight might come back a little when the wee one comes. It’s all well and good saying that and giving a bit of hope, but when it doesn’t happen, it just deflates you. That’s been a bit disheartening.
I was told, when I saw my diabetic specialist when all these changes were going on, to try and lower my blood sugar levels as quickly as possible. But the eye specialists reckon that’s not helped my eyes either. If anyone does need to lower their blood sugar levels they need to do it at a steady rather than rapid rate, because that could cause more complications. Unfortunately, we weren’t aware of that at that point in time. It might have changed things, but there’s no guarantee.
It has changed my outlook on life completely. I try and enjoy life as much as I can. There’s restrictions which means I can’t just go out and drive a car or go and get transport easily. But I just try and do as much as I can and enjoy life to the full as much as possible.
To find out more about DMO and related conditions visit The Macular Society on www.https://www.macularsociety.org/