Chris's story: Living with total blindness and coping with type 2 diabetes

Working for the railways, I know that people are very quick to complain when things go wrong. If you don’t complain constructively though, you are part of the problem.

My blindness is the most visible of my medical conditions, but is ironically the one which poses the least threat to my life in a medical emergency.

I recently tried to watch a film on the Diabetes UK website about hypos that didn't have audio description. I couldn’t get anything from it and it made me worry that other things may have been overlooked. 

I got in touch with the charity to tell them that in this instance, they’d got it very wrong. They listened to what I had to say and now I’m delighted to have started volunteering with the online team to ensure that the website is much more accessible for people with sight loss.

Listening to website information

Totally blind people like me use a screen reader, which is a piece of software installed on a PC, tablet or smartphone, which reads out what's on the screen. I'm unable to use a mouse and therefore rely totally on being able to use the keyboard, to navigate around web pages, emails or Word or similar documents.

I’m a member of Diabetes UK. Instead of the printed members’ magazine Balance, I get an audio version on CD which means I can listen to it at my leisure. In the future, I'd love to be able to get a podcast version of it, as this would allow me to browse through the magazine's contents much faster and more efficiently.

I’m happy to speak up on behalf of others, who may lack the confidence to do it themselves. Accessibility should be everyone’s responsibility and I strongly feel that when it comes to making our world more accessible for all, doing nothing is not an option. If there is one phrase or saying, which neatly sums up my attitude to life, it would be: "Always choose courage over comfort."

It wasn't until the end of the first year of my postgraduate research degree in accessible public transport, that I was first diagnosed with type 2 diabetes. There’s no history of it in my family and it’s not related to my medical condition.

At first the diagnosis seemed like yet another condition to have to come to terms with and when I was unable to control it with diet alone, I had to begin a regime of Metformin and Gliclazide tablets and subsequently a daily Liraglutide (Victoza) injection. I quickly realised that another course of major adjustment in my life had arrived, when I was least expecting it. 

Sight loss

I was born with a condition called "Riley-Day Syndrome" or to give it its full title "Familial Dysautonomia". I fortunately only have some parts of this condition, which mainly affects my body's sensitivity to pain and temperature. This means that I need to be particularly careful when bathing, showering or cooking that I don't accidently scald myself and not realise it at the time.

After having suffered a routine bout of conjunctivitis as a baby, which deteriorated into a serious eye infection, which resulted in both my corneas being damaged, the decision was taken to perform corneal grafts on both eyes, in order to attempt to restore my sight. 

Unfortunately, another trait of Riley Day Syndrome presented itself following the surgery, which is that my body creates excess scar tissue round wounds and so the grafts were never able to take fully. The first eight years of my life were mainly spent either in hospital having more corneal grafts performed or being schooled at home by a mixture of my parents and various home tutors.

I'd be lying if I said that these early years of my life weren't traumatic, but I had the resilience which many children are blessed with, to be able to adapt to major changes in their lives together with the unwavering love and support of friends and family.

I also had my love of railways and trains, which has been with me since birth and which will be with me for the rest of my life.

I had to learn new, safe ways of finding my way around, learning braille so that I could read once again and learning to touch type, so that I'd still be able to communicate with the outside sighted world, which I'd left behind for good. 

All these skills still stand me in great stead today, especially the ability to touch type. In those days, I was using either a manual or an electric typewriter, whereas today I'm typing this article on a PC. The ability to communicate by whatever means is nevertheless an absolutely essential one.

At the age of 11, I began attending a boarding school for the blind in Worcester, which still exists today. In the eight years I spent there, we were taught to live independent lives, to navigate safely round the town centre, do our own shopping, cooking and washing and to travel safely on public transport to and from home.

I did my GCSEs and A-levels and Worcester and then went on to read modern languages at the University of Wales, Swansea, before deciding to specialise in public transport and complete my postgraduate research degree in London. 

I was naturally worried about injecting myself being totally blind and with the reduced sensitivity caused by my Riley Day Syndrome. How could I maintain my independence and not injure myself by pushing the needle in too far? These and many other concerns were swirling round my mind, when I arrived at my local diabetes clinic. 

I'd like to pay great tribute to an extremely experienced and dedicated diabetes specialist nurse Zoe, who calmly and methodically began talking through all my concerns and teaching me how to use the pre-filled pen and needle. 

Zoe had had plenty of previous experience of teaching people with very little or no sight how to use such pens and this proved to be invaluable. Healthcare professionals who aren’t used to dealing with visual impairment may have taken the attitude that I might need to have someone help me inject myself on a daily basis, but you always want to live as independently as possible.

Zoe’s been outstanding. She taught me how many clicks of the dial I needed to count round, to dial up the correct dose and the process of unpacking, fitting, using and disposing of the needles. 

We both decided that auto-cover needles were the best sort for me to use, as there was no danger of me accidentally pricking my fingers whilst fitting the new needle and thereby potentially contaminating it, or when removing and disposing of it afterwards. 

Zoe's calmness and ever positive attitude really shone through and I quickly became familiar with the safe operation of the equipment and have been able to inject totally independently from the very beginning with only the odd minor issue along the way.

When I had to switch to a new Semaglutide pen, the needles I’d come to rely on weren’t listed as fitting that pen. But Zoe said: 'there’s no reason why the needles you know and love won't fit the new pen" and she turned out to be quite right!. I then encouraged her to spread the word via the drug company reps and other channels, in case there were others like me out there using these auto-cover needles, who needed to switch to the same type of pen.
 

Living with total blindness can be challenging at the best of times; coping with type 2 diabetes on top of that can be doubly so.

I've always been totally fascinated by trains and all things related to railways.  I've been lucky enough to have worked in many different areas of the public transport field, but almost all of them have involved trains of one sort or another.

Work

I help train many of the station staff and train crew in disability awareness including how to guide visually impaired people safely through stations and onto and off trains and help them find a seat on board. I also remind them to look out for bracelets like my Medic Alert one, which contain medical information useful in an emergency.  I also use my experiences of diabetes in my training too. I make staff aware that someone behaving erratically may be suffering from a hypo, for example rather than simply being under the influence of alcohol. Another thing I stress to my colleagues is that when a situation becomes safety critical, doing nothing is not an option.

Lockdown

I’ve missed social interaction as I’m normally out and about on the trains and stations doing training. We’re a very close-knit family on the railway network. I’ve been keeping in touch with my colleagues via email and zoom though and look forward to being back out there with them on the network hopefully sometime next year.

I’ve not been the kind to run marathons or climb mountains. I’ve always been fascinated by travel and how people get around. Lockdown has been extremely challenging for me, but I'm sure it has for many others too. I go for nice walks with my pet old English sheepdog Dobby, who's named after the house elf in the Harry Potter books.

I have an excellent GP and diabetes centre and I’m seen every quarter for check-ups. 

Cooking isn’t something I do much of despite my surname, but I do try and eat well. I've grown to love bran flakes for a really healthy breakfast, to start the day off right. I love a nice hot, spicy curry and that’s been my lockdown treat.