Patient voices: priorities, hopes, ambitions

"I qualified as an RGN in 1988, and then went to university to study biology, specialising in marine biology. I had always been keen on outdoor activities and scientific fieldwork in remote places. After graduating, I secured a series of short contracts with the British Antarctic Survey (BAS) in Cambridge. In between, I joined youth expeditions to South Greenland, Costa Rica and British Columbia. I then spent time in Western Australia and considered emigrating to Australia or New Zealand.

While working in New Zealand I took a medical for a SCUBA diving course. This revealed glucosuria. The GP advised me to limit intake of sugary and fatty foods, but did not recommend drug treatment. On returning to the UK I decided to try to secure decent work before going to a GP, as I knew the diagnosis would have implications for employment.

However, after spending the UK summer doing transport surveys and working in a travel agency, I realised things weren't going well. I found the local hospital completely useless. They put me on tablets, which had no real effect on my blood glucose levels, and eye read blood glucose strips, which were so inaccurate that I didn't bother to use them. The hospital started me on bimodal insulin. When I asked if I had to be an inpatient to start, the nurse just laughed.

Then the specialist nurse sold me, with no choice of model, or information about the possibility of buying elsewhere, a £35 blood glucose meter - a lot of money when on a low income at a boring job, with no hope of anything better. When I tried to explain that I wanted to know about mountain walking, she told me about her very modest rambling - not what I meant at all. After her laughing at my question about starting insulin in hospital and this query, I stopped asking any questions, and in fact, stopped going to the hospital at all. I got the distinct impression they didn't know what to do with a fit active 30 year old who develops diabetes and wants to continue being fit and active.

The only area they offered information about was pregnancy - with no job, no home (living with parents) and no partner that was the last thing I was going to do. I had mentioned the job and home conditions and had never mentioned the non-existent partner, so they might have guessed.

I gave up working at the travel agency, and lived off my savings. Within a few months, I lost my newly acquired "until 70 years" full driving licence, and got one for just three years. About a year later, the law changed, and my right to drive minibuses and vans was removed and with that my chance of continuing to work in ecotourism/outdoor activities instruction disappeared. Also, I couldn't re-enlist in the Territorial Army.

An Australian friend, a nurse, realised that having to inject 30 minutes before each meal, and commit to eating six hours later wasn't very convenient. She asked her mother, a pharmacist in Tasmania, if there was an alternative - so, with the information from down under, I went back to the hospital to ask to change to a basal bolus regime, which I have been using ever since. How the heck they thought a bimodal regime was suitable for me was completely beyond me!

Fortunately, help came from a completely unexpected area - at the annual BSES Expeditions meeting I learned about the MSc Environmental Technology at Imperial College. I didn't realise that a scholarship was also on offer, so I was delighted to be offered both a place on the course, plus fees paid and an allowance. After studying I worked for the Public Health Department of the Eastern Health and Social Service Board in Belfast. While there I met a diabetes specialist - the first health professional who gave me any encouragement or any indication that finding my own solutions was a good idea.

On returning to England I met my partner, Russ. He works in Antarctica for several months every year, so in addition to missing him, I'm also constantly reminded of somewhere I have long tried to work. Just as the rules preventing women from overwintering changed, I developed diabetes, and became "too old".

However, I did travel as Chief Scientist on a youth expedition to Chile, Falkland Islands and South Georgia in 2003 to 2004. In the past years in Cambridge, I worked as an Assistant Ranger at a country park, setting up a Health Walks scheme and a permanent orienteering course plus running a series of orienteering sessions for people with mental health problems. They seem to find orienteering easier than some nurses, ocupational therapists and social workers.

Finally, after seeing a letter to an outdoor magazine, I made contact with MAD - Mountains for Active Diabetics, founded by Nikki Wallis, a National Park ranger and mountain rescue team member in Snowdonia. I now do orienteering, and participate in adventure races and mountain marathons".

Learning points for nurses

  • Effects on employment, driving etc can very hugely significant, particularly if diabetes treated with insulin is acquired during young adult life.
  • Not all women want to have children.
  • Ask about a person's priorities, hopes, ambitions etc, rather than assuming.
  • Diabetes is not the only or even the most important thing in my life - I can't speak for every person with diabetes, but I don't think I'm the only person to think this.
  • Specialist groups can be very helpful. For anyone with diabetes and interested in outdoor activities, Mountains for Active Diabetics is ideal."

 For other stories about experiences of diabetes: go to the stories menu.