The pandemic was a really tough time for me.

By this point I was told that I was no longer in remission, and I had a blip with my eating and regained some weight, although I was able to lose that quite quickly.

But I also suffered two bad falls, and because I have problems with my back I’ve been on crutches ever since, and I have found it very hard to do any form of exercise to help lose weight.  

I am working with my healthcare team to monitor my complications. I am currently taking insulin, and I’m on a plan to ensure my weight remains stable.  

I do believe the lack of contact and support resulted in me developing retinopathy as I didn’t have an eye appointment for two years. During the pandemic was a very challenging period for people with diabetes and not having that external assessment and not being monitored properly really impacted on me and no plans were in place should I develop any complications. It was known that I had high blood pressure and I was approaching my early 40’s so important conversations and future planning just didn’t happen.

Prior to the pandemic, I had constant monitoring of my eyes for about 7 or 8 years as there were some concerning little blood vessels behind the eyes. I had laser surgery about 7 years ago but as the checks on my eyes weren’t maintained and I didn’t get treatment in time this resulted in a burst blood vessel behind my right eye last year summer whilst I was away camping with my seven-year-old. Now I have a permanent distraction in my eye, a leak in my eye and I had some laser surgery which seems to make it better for a short while and then it comes back.

The blood vessel bursting in my eye was directly related to my diabetes as concerns had been raised previously about eyes. At that time I was having 6 monthly eye check-ups which weren’t maintained during the pandemic and so the opportunity to do something at an earlier stage was missed.

So late last year in November after chasing things up, I was put back onto the system and I was literally given a catch-up telephone call for less than 10 minutes and told I would be put back on the yearly review. They just wanted to know what the figures were from my Libre and it was just a very general overview. My next appointment is scheduled for July.

The response from the consultant to my burst blood vessel in June was pretty casual, as if to say that sort of complication can happen when you have diabetes, the appointment felt like a check list and really basic. At the time I didn’t raise my frustration about developing retinopathy as I know the NHS was going through tough times.

Impact of retinopathy

The retinopathy has impaired my sight and also affected my health. I’ve not been as active as usually and when I try to be active it makes matters worse. So since last June, I’ve put on a bit of weight and my health has suffered. Lots of things have happened as a consequence of my condition. The consultant also suggested that I follow-up with my GP. and to do my feet assessment and blood tests. But my GP surgery hasn’t been that proactive with my care and they’ve usually left it to me to make the appointments for my blood tests.

The response to my current condition was that it’s a consequence of having diabetes. However, my bloods have been very good over a period of time so they seemed pretty baffled and put it down to my age and having diabetes for over 30 odd years.

In the Spring of 2016, my health started to deteriorate very badly. I suffered my third bout of Bell’s Palsy. I had just become a father and my life priorities were changing so I decided  – for a change – to listen to my GP and get some blood tests. My visit to the discuss the results could not have been a bigger wake-up call.

I was informed that my HbA1c was at a dangerously high level but the next bit of news knocked me out: my blood results showed my kidneys were shutting down and I was to be referred to the chronic kidney disease team. I fainted.  

The thought of dialysis, having spent hours sat with friends who have suffered renal failure, and the reality of not seeing my son grow up was the wake-up call I needed.

My dad, who was a type 2 diabetic, died at 54 in 2009. His health was pretty good apart from type 2 diabetes and he seemed to have it under control but he died from heart failure. And that started to play on my mind. It saddens me every day that he died so young, but my health at that point was in a far worse state than his was when he died.

After living with diabulimia for several years, I developed retinopathy problems, such as microaneurysms in my eyes. I also damaged some of the blood vessels in my feet. However, what I have found to be most damaging is the impact on my mental health. I became entirely consumed with the goal of losing weight, no matter the physical detriment it caused my body. It really scared me to realise that I was already having complications at such a young age.  

The sight loss was absolutely terrifying. I had three young children and I was trying to play it down as much as I could, because I didn't want to worry them. I couldn't drive and we were a mile and a half from the nearest bus stop. I couldn't recognise people, all I could see was silhouettes. It was really being dependent on people to take me to places.

Luckily, my husband was working nights at the time, so he was at home most of the time during the day and could help.

I had to have six weeks off work. At the time I was working as a community nurse and relied on driving, which I now couldn’t do. I work in the intermediate care team, where we support people in crisis to stay at home and avoid a hospital stay, so a lot of my job is driving to and from patients and doing assessments. Even things like using a blood pressure machine or thermometer were quite hard with my eyesight. Work were very good and supportive, and they gave me the more local patients so that I could walk to some of them.