There wasn't a National diabetes retina screening programme back in 1978 when I was diagnosed aged 12 with Type 1 diabetes, it was established around the early 2000's. I was 16 when I moved from the paediatric diabetes clinic to the adult clinic and that was when I first started being aware that diabetes could cause sight problems. Retina checks were done on an ad hoc basis in the normal diabetes clinic back then, sometimes if the clinic was busy I was told my retinas would be checked next time as I was only young or if there was time in the clinic I had drops put in and a doctor shone a hand held torch in my eyes and checked for potential problems. There wasn't digital photography to allow for any comparison with previous checks and no organised annual screening. As I moved to new towns with my job the random timing of diabetes clinics and retinal checks continued throughout my 20's as I needed to register at new GP surgeries and wait for new referrals to hospital clinics with each move.
I was working in a new part of the country and studying day release at a London college, as far as I was aware I had no problems with my sight. One morning I got the train into London with an incredibly sore red eye, I couldn't bear light going into my eye so decided that I needed to ask for medical help. I went to a London eye hospital A&E and was diagnosed with iritis - inflammation of the iris which is incredibly painful and dangerous to sight - and was prescribed drops by a Doctor who then asked me "who is dealing with your proliferative retinopathy?" I was completely shocked and said I wasn't aware I had it, he booked me in to an emergency clinic the following day where my battle to save my sight began. Looking back now I am so grateful for that course of events. If I hadn't had iritis and hadn't gone to an eye A&E I doubt I would have sight today. It underlines the vital importance of regular retina screening, I had no symptoms to suggest that anything was wrong with my sight. Thank you to that Doctor and the amazing NHS team in London who saw me so quickly and did everything they could to help me over the following years.
I had maximum laser treatments on both eyes over the next few years with the maximum number of laser burns possible put on my retinas every few weeks and to start with apart from grainy, light sensitive, sore vision I didn't notice too much change in my sight. The rod cells which enable peripheral and night vision were in the areas being lasered to try and protect my central vision and as the treatments and months went by I started to notice I couldn't see at dusk and in the dark, as a passenger in a car at night I couldn't see the pavement, double yellow lines or lane markings. It was incredibly frightening, there were large areas of my peripheral vision missing. Trying to find the correct train home after treatment became increasingly distressing and disorientating until I had to start to use hospital transport there and back. I was told during this time that I could no longer drive and I wouldn't be able to drive again. It paled into insignificance against trying to save some sight.
One morning I woke with no vision in my left eye, I rubbed my eye thinking something was in it but still nothing just a sea of grey fog and as I stood up blood started to appear inside my eye. It paralysed me with fear. I got to A&E where I was diagnosed with vitreous retinal haemorrhages -fragile abnormal new blood vessels grow in the retina and can easily bleed into the eye. I needed to wait for the blood to clear but as the blood is trapped in the vitreous jelly it can take weeks/months to disperse leaving large dark cobweb shapes obscuring sight. After waiting for the blood to clear with numerous further bleeds I was told I needed a vitrectomy operation where the jelly is removed from inside the eye along with the trapped blood and is replaced by a clear liquid. Sadly treatments such as Anti VEGF injections weren't available at this time and after further operations, lens removal and cryotherapy my left eye was too damaged and my sight couldn't be saved. At that time my right eye started to follow the same progression and I ended up with hardly any sight for approximately 12 months. This period of my life was utterly devastating and I was beyond scared. I lost my driving licence, my job and career, my income, my reason to live where I did, without the help of my family I don't know how I would have got through it. I was trapped inside my head with only a small slit of light at the far edge of my vision. Eventually things settled enough for me to have a vitrectomy in my right eye and the day after when the post op bandage was removed was the best day of my life. I can remember light entering my head and the pattern on my top appearing through blurred sight, white spots on a dark background. It was the most uplifting and amazing moment that has kept me positive and optimistic ongoing. In reality this terrifying period of my life lasted over about 5 years and at times I despaired for seeing again. I couldn't distract myself with something else to take my mind off things, audio books just about kept me sane but there was no escape from the grey swirling mess in front of me. I had a ringside seat and couldn't look the other way.So 30 years later how are things? Well I'm partially sighted, I can't see through my left eye and I only have central vision in my right eye. All my peripheral vision has gone so I can't see anything at the sides of me, I can't see in low light, dusk or dark and things are washed out in bright light but the sight I do have is the most precious thing.
Everything I look at is surrounded by a constantly flashing halo of neon green, purple and orange lights, they're SOS signals from my threadbare retinas alerting my brain that they are low on oxygen and nutrients. The lights are so distracting when I'm trying to cross the road or focus on a page and are a seasonal nightmare in December when they seem to flash in sync with the Christmas decorations in town. My vision is like looking down a tunnel, not a crisp, clearly defined tunnel but one with distorted flickering edges. Nothing is straight as my retina isn't quite flat, lampposts and trees have bends in them and nothing is quite where I think it is as I don't have perspective and misjudge distance. I see steps and kerbs as ramps, using kettles and boiling water are a no go. I walk along the edge of buildings like an undercover detective as I need a straight line to follow else I become dizzy and disorientated in open spaces. Without any peripheral vision at all busy areas are a challenge as I don't see people crossing in front of me until we collide often accompanied by a blunt "Look where you're going" from them to which I usually answer "I wish I could".
I get the same level of optimistic suggestions to regain my lost sight as I do to cure my Type 1 diabetes. "You don't look partially sighted or diabetic you really can't tell, are you sure? you should get a second opinion" or "Why don't you try contact lenses or varifocals- my optician is really good I'm sure they can help you- then you can start driving again". It doesn't register however often I say it that my retinas are too damaged, it doesn't matter what style glasses frames I put in front of my eyes I haven't got sufficient functioning retina remaining.
Dealing with my diabetes and insulin pump is an ongoing challenge but technology is advancing so quickly with touch screens and smart phone apps that connectivity between devices can overcome some of the issues. For now I have some excellent magnifying equipment from the hospital low vision clinic and multiple pairs of reading glasses I stack until I can focus sufficiently. My main challenge is that insulin is a clear liquid - I really struggle to see clear things- I need to put clear liquid into a clear plastic reservoir whilst avoiding clear air bubbles. I have a system that works most of the time but thank goodness I only need to change my cannula every 3rd day!
Living through sight loss was and still is the most overwhelming fear I deal with. I attend regular retina clinic appointments at the hospital and apart from having a cataract operation in my right eye things are as stable as I can hope for. That doesn't mean I'm not terrified of things going wrong again and I'm scared of non diabetic age related eye problems starting as my right macula is the only bit of functioning retina I have remaining. I have a procession of floaters that drift across my sight and I recognise their shapes but if anything different appears in my sight - usually an eyelash -it sets off absolute panic in my mind. I'm beyond thankful that since all my problems in the late 1980's and early 1990's the National diabetes retina screening programme has been established to monitor and pick up on very early retinal changes and to offer the best care pathway, treatment if needed and reassurance to people living with diabetes. Knowing that things are as stable as possible with your sight is priceless information. The level of sight I have lets me live independently although I know I miss a lot and collide with too many things. I'm beyond grateful to the NHS for helping me through such a devastating time and for the ongoing help to provide me with the best chance to maintain the sight I rely on today. I'll do everything within my capabilities to try to protect and keep the incredibly precious central vision I have.
