300,000 injections - 50 years of diabetes
In July 2010, I celebrate 50 years as a Type 1 diabetic.
Celebrate, because without Drs Banting and Best - the co-discoverers of insulin - and the GP who got me into hospital, I would have died at 16 and not had the life I have had. My parents and I were travelling home across Europe in 1961after three years in Cyprus.
I started to feel dreadful in Switzerland and then really ill just outside Ostend. My father got us on an earlier ferry and we arrived in England - to break down. The fan belt had broken. My father has always said that an AA man appeared out of nowhere, like an angel and fixed it.
The next day at a relative's house, their GP diagnosed diabetic coma, which with pleurisy and pneumonia meant being whizzed into hospital. The next thing I remember was a voice saying "she's alright now", and only when I saw my parents' faces that I realised that I had been on the danger list - for three days... thank you John Radcliffe hospital in Oxford!
I was also eight stone.. When told that a district nurse would come each day for the injection I rebelled - the thought of depending on someone else filled me with horror, so I did my injection without practising on an orange and that was that. The good news was that I wasn't eating sugary stuff, I would stay slim...(.wrong!)
I went home with a small weighing machine, a glass syringe, a Pyrex lidded dish for storage of syringe in surgical spirit, a glass mug to catch the urine, and a determination diabetes was not going to interfere with my career....I wanted to sing opera...
To Nottingham, where a large sister weighed me and shouted my weight across the clinic saying that I was overweight (at 10 stone I was 5'7" tall) and had been eating too much - imagine the humiliation at 18years old!
I left home, or rather, my parents left me for Gibraltar, and I went to study music in London. I attended Middlesex Hospital and used to bury my head in an opera score to prevent anyone talking to me about their blood sugars, and "what's yours like dear?". I was told to "go to bed early and keep up the urine tests " - I did neither.
The tests were always over 2 per cent, and I was always told off, so I gave up. I did not forget the injections. At some point, I think when I changed to two injections a day, I found out that disposable syringes could be bought from the supplier so I then went onto a much more pleasant routine. Eventually they went on the prescription list - when someone realised that giving free syringes to drug addicts and not to diabetics was not politically a good idea...
I got one of the first blood test machines from Hammersmith hospital - 'on loan' (but I stole it when I left London). I won two prizes for performance at the college, but I also discovered in a chat with my teacher that I really was never going to make it as a soloist.
The bottom had fallen out of my world. So I became a teacher - then a lecturer in drama. Then I started my own music theatre company. This lasted a glorious two years until I went home to my parents with 13 boxes of possessions ( the rest having been sold) and a chaise longue.
Then followed an ever-changing career in the arts. Somewhere along the line I was put on the new 'human' insulin and had a terrible time for several weeks - I was one of the few who lost their hypo symptoms and was suddenly in the middle of a sentence talking absolute rubbish.
I had not been warned about this and the consultant told me that while they were aware of the possibility of this result, they were not telling people so as not to frighten the elderly - what about me? We had a row - and I went back onto pork insulin vowing never to leave it again. I did not retire - I was made redundant, and as I was already doing classes in garden design, went for it full-time.
I started a practice and was doing a part-time degree in garden and landscape design (Bella's garden, pictured right). I was 55 and the oldest student at the time. I won four awards for my gardens - two national and two county awards.
Just establishing myself, having won a design prize, and facing the final exams for the degree, I heard my husband giving symptoms to the GP which put him on the list for a heart bypass and recognised that I had them too (copycat!) had an angiogram and was kept in at Barts - my husband said that I had gazumped him.
I stayed in Barts for eight weeks - every time I got near to an operation, someone else was worse than me - my operation was cancelled four times. Needless to say I was traumatised - I was not anxious over the operation, I just wanted to get on with my garden design. I phoned the mortgage company for a second mortgage to have a private operation and much to my surprise they agreed. I asked to be transferred and then the operation took place at Barts the following week.
I have since persuaded my diabetic consultant to tell me that the operation could have been the result of my not-very-good control over the years. My blood sugars have always been up and down.. (he also told me that insulin 'helps' weight gain - and I remembered all the depressions about being overweight.. no altogether my fault after all). My garden design career took off and I won several awards for my designs - (and designed a courtyard garden for Broomfield Hospital, Chelmsford Outpatients Department) . A year or so ago I was persuaded by my GP to go onto bolus basal with human insulin - four injections a day - and to go for a BERTIE course.
This was the best thing ever. For once in my life I did not feel I was being told off, but was treated with respect and empathy. Several people who had been diabetic a long time all felt the same - a great pity we had all felt this as it undoubtedly contributed to those times of making up the blood test sheets - times that we all know (be honest!). The course for me was revision and learning - it also made me take the blood tests seriously and I do them religiously now. I have to say that in spite of the up and down blood tests, the diabetes has not been a major problem.
Worse was being a woman - PMT every month. And I have had some depressive periods - possibly diabetes, possibly just the down side of being creative - who knows? Arthritis has taken its toll, and my husband is now disabled so I am at home, a garden writer not a designer. I have published a book and started a garden website (www.gardensandpeople.co.uk) - which is thriving.
I had read about insulin pumps but assumed that I was too old and the young would get them. Wrong! I have now had one for five weeks - I am the oldest recipient in my clinic at 65, but as my results were still wonky, I was given one - with a remote control! It's great - my blood sugars are levelling out (with the odd blip) . When eating out I can do the blood test in the car and use the remote at table. I can infuse insulin on a beach, in a garden, anywhere. No more injections .I worked out roughly that I have done 356,750 of them ...
Words by Bella
What is BERTIE?
BERTIE: Bournemouth Type 1 Intensive Education Programme - a structured education programme for people with Type 1 diabetes.
The main aim of the course is to provide tools to enable a person with diabetes to manage their condition. It is a practical course where carbohydrate counting, working out appropriate insulin doses, managing exercise and illness are covered in detail.