What kept me motivated was knowing about the seriousness of the condition and the complications that can arise from diabetes, like amputations, losing your sight, and possibly causing damage to your kidneys. Although I haven’t lost anyone close to me as a result of these complications, I do know of people who have experienced long term complications of diabetes, and that was enough for me not to want a similar outcome. There were also other health concerns, like my blood pressure, which meant I needed to make these changes.

The biggest thing for me was not being able to carry a pregnancy. I've had multiple miscarriages and I don't want other women to go through that. With polycystic ovaries combined with insulin resistance, I want to raise awareness.

I have a husband who has a child from a previous marriage and I'm lucky to have that family network with him. But until I met him, I didn't have that. And it was gut wrenching, not being able to have a family. I think my worst situation was when I miscarried at about 14 weeks. It's when you think you're safe. When I got to that 12-week mark, I started to think I could tell people and was getting ready to do that. And then all of a sudden little one was gone. 

My living situation has been difficult to deal with. I'm 45 years old and live in what is called an extra care complex. It's basically like sheltered housing, but it's got carers in house and safety mechanisms.

That's how serious it's got for me, that I can't live out in the community anymore.

It's safeguarding basically because I fall a lot. I suffer with regular blackouts, and many other complications from my diabetes including neuropathy. I also have pancreatitis.

My symptoms got so severe I became unable to sit at my desk and in 2020, I had to give up work. I absolutely loved my job on the parking team for the local council, helping people like me who have limited mobility independence. I hoped that by going part time, I would alleviate that. But, unfortunately, it became much worse. I tried voluntary work just a couple of hours a week and managed that for between six months and year. The pancreatitis then started to lead to hospital admissions and, unfortunately, I'm still trying to get back from that. 

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.