Living with visual impairment and type 1 diabetes
I never thought I would write an article. Thank you Nupur for making me a blog writer!
My name is V. Lakshminarayana and I am from Hyderabad, India. I’m pursuing my Masters in Political Science at the University of Hyderabad. I’m both, visually challenged and type 1 diabetic. I’m totally visually challenged by birth. I’m independent at mobility and daily living skills. I can work on computers efficiently and I use a smartphone just like sighted people do.
I was diagnosed with type 1 diabetes on 13th August, 2012 at the age of 17 at RDT Battalapalli hospital. I kept visiting the doctor with symptoms of diabetes. He told me children do not get diabetes, as most people believe. I visited the hospital again and again with the same symptoms and finally the doctor asked for a blood test. The blood test confirmed my blood glucose was 646 mg/dl and I was immediately admitted in the hospital to bring my blood sugars down and started on an insulin regime. I was put on mixtard insulin (I am now on a basal bolus regime). The diagnosis changed my life completely.
In my case, the vision challenge is congenital and has no connection with diabetes (it did not develop as a diabetes complication, I've had it since birth). It occurred because my parents had a consanguineous marriage. Often people ask me to pray to God because "if you pray, you'll surely get your vision back and your T1D will be cured". I always reply "OK" just to satisfy them. I'm agnostic. Education taught me to believe in science. I'm visually impaired because my nerves connected from brain to retina are weak. There is no treatment to cure this yet.
I'm well adjusted and happy about my life.
T1D has no cure so far and I appreciate the research and studies being done to manage and eventually hopefully cure T1. I would rather use the time for praying in efficiently understanding my diabetes and glucose fluctuations. Perhaps people have the time to pray but I don't. I don't want sympathy, I want friendship. I respect and love people who believe in God too.
My childhood education until 7th standard happened with Braille script. I read, wrote and did mathematical calculations using braille devices. I learnt computer skills and spoken English with the help of our loving teachers Alba and Esther. These skills helped me in educating myself to manage T1D. All my education depends on E-copies. I use the computer with the help of a screen reader called JAWS and all my study material is in PDF, DOCX, PPT, XLS, TXT etc. My friends at university are very friendly and supportive. They help me with audio recordings or scanning printed material in case I don't have access to soft copies.
In my spare time, I enjoy teaching children braille reading and writing in English and Hindi and basic mathematics. The cute kids never stop making noise in class and though I sometimes enjoy it, I try and control them by saying "don't make noise". I'm happy I've learnt patience from a noisy bunch of brilliant children. Thanks RDT HSIE, my own school for giving me this opportunity.
I am also a certified computer trainer and I trained the trainers at Enable India, an NGO working for empowerment of people with disabilities in Bangalore.
Rural Development Trust, Anantapur gave me special education at no cost. I was lucky to have healthy food and accommodation. After diagnosis, RDT gave me a special diet and insulin regularly. Both teaching and non-teaching staff supported me in managing T1D. Campus in-charge Sister Ritty, asked her diabetic friends how to bring my BG to normal levels. Although she knew little about diabetes, she was very supportive and I’m grateful for her special care and encouragement. The director Mr. Dasarath always gave me time to explain my concerns even though he had a packed schedule. He was very curious and helped me search for good doctors and hospitals. He introduced me to glucometers. 'Arkray Glucocard 01' was the first glucometer I owned. Thanks to him I get some money from RDT to manage T1D even after I finished school education. He proudly tells people I'm inspirational and I’m proud to be among his best students! I’m thankful to University of Hyderabad for providing free insulin.
My parents support me in whichever way they are able to. I cannot expect financial support from them. I eat according to my T1 preference whenever I visit home which is in a rural part of Anantapur, Andhra Pradesh in the southern part of India. I’m sure had they been educated, I would have had greater support from them. I always feel education is very important for successful T1D management. My parents are very confident about me. They know that I can lead my life on my own successfully.
Sweet Souls and Club 1 Diabetes
I’m lucky to be part of two wonderful support groups, Sweet Souls and Club 1 Diabetes. My one post on social networks, Facebook and Beyond Type 1, introduced me to this beautiful T1 world. Happy to have T1 friends throughout the country! Nupur introduced me to Sweet Souls in October 2017. Nalini and Ramesh invited me to their home for Divali. My real T1 education started at their beautiful home. Sunil anna taught me insulin administration by sending me audio notes over WhatsApp. I’ve had great encouragement from the many T1 Hyderabad families associated with Sweet Souls. Though I’m not able to precisely follow a low carb diet due to some limitations, I’m learning low carb with the help of Sirisha and others.
I believe education and community support is an important step towards T1 management.
I’m very happy to participate in Club 1 Diabetes social media campaigns. I've made many T1 friends from all over the country through Club 1 Diabetes. I find Club 1 is a great source of knowledge and I'm thankful for their educational and inspirational articles and blogs.
I regularly contribute to their monthly campaigns, here is one of my videos on their April topic, Hypo Hacks.
Club 1 Diabetes was the inspiration for us to conduct a run for diabetics in Hyderabad. Divya and I started the Sweet Souls run for diabetics in Hyderabad with the help of Nalini, Ramesh, Sunil, Ramana and Sirisha. Sweet Souls and Club 1 Diabetes are great platforms for me to educate many newly diagnosed T1s. One fine morning in March, the Club 1 team from Pune travelled to Hyderabad to run with us - we made great memories! Here's the full album.
I’m grateful to Dr. Kalyan Chakravarthi, from Citizen Speciality Hospital and Dr. Sheetal from Dr. Mohan’s Diabetes Center. Earlier I would take my shots using syringe and vials and had to be dependent on people for help since I couldn't see the markings on the syringe. There were times I delayed meals if no one was around to help. Sometimes I skipped both, meals and insulin shots because I had to depend on someone to draw insulin for me. Even if I found someone to help me but they didn't clear the air bubbles, I would end up taking the wrong dosage.
I visited Dr. Chakravarthi who was so kind and introduced me to the basal-bolus method with an insulin pen. I’m very independent with the pen. Insulin pens make clicking sounds when the dialer is rotated to set the dose. If I need 5 units, I have to rotate the dialer 5 times and make sure I hear 5 clicks to set the correct dosage.
Keeping insulin in the recommended temperature was challenging in the Hyderabad heat. I carried pens in my college bag. The unused penfills would be refrigerated at the university health center. Our campus is huge and I had to walk 3 kms just to get my insulin from the health centre. Dr. Sheetal donated money to buy a mini refrigerator for me and now I safely store insulin in the fridge in my room. Dr. Sheetal is kind, helpful and understanding. Whenever I need medical help, I approach her. She is among the best doctors to treat T1D in Hyderabad. Both Dr. Kalyan and Dr. Sheetal never treat me as a patient and are very supportive and friendly.
I have used 3 glucometers, Arkray Glucocard 01, Alere G1 and BeatO – none of them are accessible for a visually challenged person. I was able to apply blood to the strip but as I could not see the reading, I had to depend on someone to read it out for me. Checking glucose, especially in the middle of the night was very challenging. Sweet Souls gifted me the ‘Prodigy Voice’ glucometer which really made me independent. I now check blood glucose on my own.
I love Dr. Bernstein. I strongly believe his concept that diabetics can also have non-diabetic blood sugars. Absolute normal blood sugars are only possible through a low carbohydrate way of eating with sufficient protein. I’m not able to fully follow low carb right now due to some limitations but I try and stick to the Law of Small Numbers as far as I can. I have been looking for low carb food delivery options at local hotels and canteens. I could not find anyone who can provide affordable low carb meals for me as a student. For now, I eat chapati (Indian flat bread made of wheat, commonly and easily available) in my hostel mess. After I start earning, my first goal is to eat proper low carb meals and maintain absolute normal blood sugars. Someday I will be happy to cook for myself too.
Here is a video where I talk about what and who motivates me in my diabetes management.
White cane is the reason for my successful independent mobility. It gives a visually challenged person real dignity. I can go anywhere independently. I can travel by buses, trains etc on my own. I also use google maps to travel. I never hesitate to ask for help whenever needed. I enjoy company while travelling and people are very eager to learn new things such as how I go about my daily life, travelling challenges and education. I use ride sharing apps such as Uber and Ola too if I'm in a hurry.
In fact, on 27th December 2018 I travelled alone on a long distance train from Hyderabad to Pune (my first time outside the southern part of India towards the west) to attend the Club 1 Social. I had a ball!
I make new friends wherever I go and this time was no different. Chinmay hosted me for the days that I was in Pune and we boys painted the town red!
Vision impairment and T1D gave me the best learnings. I learnt to call it 'challenge' instead of 'problem'. The term 'challenge' is the first step towards the solution.
People with disabilities do not necessarily need to depend on someone for their survival, they can be independent if they are well trained. They can also help/volunteer in assisting the needy. A helping nature does not depend on one's financial resources. Even though we are lesser privileged, if we have knowledge and empathy, we can help the needy by teaching and guiding them.
I will be honest, four years ago I wanted to simply give up and let diabetes take my life away. Then my self motivation kicked in. I realized I should contribute to this world as I received from it. This life is not just my own, many have walked hand in hand with me and continue to do so. I owe my success so far to them.
I have received a lot of support and I want to contribute to this lovely world. Paying it forward is my biggest motivation today.