A slightly different form of normal – how living with Type 1 has changed, by Helen Lazarus
October 1975 saw a low-key boxing match called the Thrilla in Manila, the birth of Kate Winslet and the dawn of a political dynasty through the wedding of Hillary Rodham and Bill Clinton. Meanwhile in a small Yorkshire market town, a worried Mr and Mrs Lazarus took their skinny, tired 7 year old to the family doctor, commencing a 40 year duel against my non-functioning pancreas which doesn’t look like ending any time soon – I’d call it a score draw thus far :-)
I don’t remember very much about my diagnosis with Type One diabetes – just feeling sick climbing the hill up from school and Mum exclaiming that she could count my ribs. I wouldn’t cry during the hours of glucose tolerance blood tests cos my Dad had bloods done for his arthritis and I got all competitive…..I seem to recall only being allowed to eat scrambled eggs???
So what’s changed during those 4 decades? You might expect me to refer to the advances in medical technology (I wouldn’t swap my insulin pump for all the proverbial tea….), but actually I’d say that my main areas are the internet, education and Type 2 diabetes.
My parents, I suspect, had very little information to guide them through my diagnosis, and early years of treatment – despite the best efforts of our local hospital. Definitely no emotional or “peer” support for me or them. These days the first thing any parent would do is to get on the net, indeed if they hadn’t already done to check those “Four Ts” symptoms – the array of information could be overwhelming but surely invaluable. Can you imagine not having that information at your fingertips?! Im personally now very active on Twitter and Facebook groups – one of the big advantages of social media is the support, both practical and emotional, we can offer each other through the Diabetes Online Community – we’re no longer so alone J
For the first 25 years of diagnosis, I was “treated” for my diabetes – I injected (apart from the 3 days when I was 17 which proved that “mind over matter” wasn’t a viable alternative to insulin after all….) turned up to the hospital 4 times a year to have my wrists slapped, suffered terrible night hypos and was repeatedly warned of the risks of going blind and amputation if I wasn’t better-behaved. The idea of being “trained” in the management of my condition wasn’t offered and never occurred to me – and I therefore did the minimum necessary. Moving my care to UCH was a revelation – I was introduced to DAFNE, and as I learnt more about my body I learnt that (contrary to long-held beliefs) the more attention I paid my diabetes the more flexibility I gained and a freedom to live my life as I wish. Knowledge is power!
The rise of Type 2 diabetes and the growth in largely inaccurate reporting by mainstream press has led to a growth in public awareness of “diabetes”. Now comments such as “but you’re not that fat” are commonplace, there is an assumption that my lifestyle caused my condition and I frequently explain that “Im not that type of diabetic”. Sure I encountered some teasing when I was young for being different – but it must be very tough these days for child Type 1 diabetics and their parents to have to deal with that growing social stigma which didn’t exist forty years ago. Rather ironically one of the results of improving my HBA1C since starting insulin pumping is that I’ve put on weight – I figure that’s a price worth paying.
One of the aspects difficult to explain to a non-D is the unrelenting nature of our condition – its not something we treat twice a day then forget about – it is an intrinsic part of me, affecting my body, my thoughts, my behaviour, my possessions and finances. If I wasn’t diabetic – it’s difficult to imagine – I’d gain time every day, have more room in my home, be less friendly with my local chemist, travel lighter……..my mental arithmetic ability would decline, I’d have to find something else to be vocal about on Twitter and sales of jelly babies would inevitably suffer.
So my version of normal is being permanently connected to a tube in my stomach, blood testing 8 times a day, calculating the content of everything I eat – constantly checking and adapting – we are experts in the art of tweaking. And the better I get at paying my diabetes the attention it deserves, the better my diabetes treats me – I’ve experienced extraordinary travel, set up my own business, love my sport – a normal life possibly, but definitely not ordinary.
Find Helen on Twitter @lazaruslife.