Nicola's story: living with retinopathy and keeping connected during the coronavirus pandemic

I was diagnosed with type 1 diabetes just before my 15th birthday. It was my mum who recognised the symptoms, as she has a friend with type 1. I was taking part in a dance show at the time and she couldn’t believe how much water I was drinking, how often I was getting up in the night to go to the toilet, and how gaunt my face was becoming. 

I didn’t have a very positive experience in terms of my diagnosis and care. A locum doctor put me on metformin and sent me home, but thankfully my mum took me back a week later to see my usual GP, who tested my bloods and sent me straight to the hospital. 

Things have changed so much since then, but back when I was a teenager I was suddenly being told what I could and couldn’t eat. Who wants that at 15? So I used to eat chocolate in private and not tell anyone.

At the age of 18 I was discharged from the hospital and told to visit my GP for all my diabetes checks. I thought this meant I was getting better, so for many years I just winged it with my diabetes. I thought I was doing ok taking my two injections a day, which I had been prescribed at the clinic as a teenager.

However, I wasn’t checking my blood sugars; they were always high and I was embarrassed that I didn’t know what I was doing. It was only years later when I saw the practice nurse and told her that I didn’t have a diabetes team, that she explained how vital this was and that I needed to attend screenings. 

It was at the age of 30 that I was told I had proliferative retinopathy. I remember thinking I had winged it for too and now I was going to lose my vision. However, I was also cross that I hadn’t got the support I needed from my doctors. 

I underwent extensive laser surgery but continued to experience bleeds every few weeks. As a result, my vision was blurring and I was struggling to see. After significant delays, I underwent a vitrectomy in both eyes. My right eye is now fine but my left eye is permanently damaged. This interferes with daily life, which can be really frustrating. It’s also a constant reminder of what I’ve been through. 

Sadly, my employer wasn’t very compassionate and I ended up having to resign on medical grounds. I also needed to stop driving, which felt like another part of my independence I had lost.

I’ve always felt there was very little emotional support for people with diabetes. I even wrote to Vaughan Gething, the Minister for Health and Social Services, to ask for his help. I have been diagnosed with mild depression, which stemmed from the problems I’ve had with my eyes, as well as high diabetes distress.  

When the lockdown began, it took me back to the days when I was stuck in the house because of my retinopathy, and was too frightened to go out. Since coronavirus, I can feel my anxiety levels rising every time I go to the shops. I worry about whether people have washed their hands and I’m always aware of how close they are to me. I’m better in larger supermarkets but smaller shops, like the one around the corner from my house, I’ve struggled with more. It’s the same if I go and queue to collect my prescription at the pharmacy.

I’ve found that people can be quite judgemental. If I go to the shops then I’ll go with my husband. One day I heard someone say, “Why does it take two people to shop?” I wanted to turn around and explain that what’s wrong with me you can’t see and there was a reason I wasn’t shopping alone. 

I was also concerned there would be delays to my next eye appointment. I hadn’t been seen since December and was worried I would end up going a year without being checked by the specialist. I was left too long by the hospital before and that’s how my retinopathy started. However, due to the severity of the problems I’ve had with my eyes, I got to see my doctor and there has been no new growth. So that was a relief, as it had really been adding to my anxiety.

Staying emotionally well during the coronavirus pandemic

I was determined that I didn’t want to take 20 steps backwards and return to the place I was in when my retinopathy was bad, so I decided to put things in place to help me manage my anxiety during this stressful time.

I make sure I’m connecting with my family and friends all the time and FaceTime has been a great way to do this. If you know your friend is sat at home with her kids then then there’s no excuse why you can’t give her a call for 10 minutes – you’ve got to keep up that contact. 

Although social media can have its downsides, I follow a lot of type 1 groups and pages, and if you’re struggling you can post something online. If people say something negative they get shot down quickly, and I find there are so many people who will say nice things. I think you need to drill it into your mind that you can’t control what other people post and what their opinions are, so skim past the negative. My wedding was days before lockdown, so I’ve been posting loads of my wedding photos up on Facebook, which should be something nice for people to see on their feeds. 

I’ve been trying to keep active, so I’ve been doing the Joe Wicks workouts every other day. I thought I was a spritely eight year old but I hurt for days afterwards, so I needed to ease in gradually – and I have to be careful with bending because of my eyes. 

I’ve also started an online course in sign language. I’m part of the Diabetes UK Flintshire group and when I was attending a wellness event last year, I was approached by a carer of someone with type 1 who was also deaf. He wanted to know if anyone was able to sign at these events. It got me thinking about making my group as accessible as possible for people. It’s something new to learn and keeps my mind busy. I can’t physically do a course at the college at the moment, so this is the next best thing. I can do an hour or so every other day and tick off sections that I’ve covered. I think it’s important to do something realistic and achievable, too. 

My advice to anyone struggling would be to have a look on the Diabetes UK website and find your local support group. What’s really good about my Flintshire group is that everyone knows me and what I’ve been through – I don’t have to explain anything. 

I need to keep a positive head on, because the way I see it, everything could get you down. But after all I have been through, I know I can get through this and be stronger for it.