Alex's story

“I’ve realised that no mountain is too high to climb – but we must put on the boots before starting, tie up the laces and pack plenty of food!”

Alex
Brighton

Life means a lot to me.  Diabetes, a condition which is growing, vast and complex, happens to live with me now (the analogy of a difficult guest in your home springs to mind) but in the past it controlled my every waking moment.  I was diagnosed with Type 1 diabetes in May 1995, two days after my 12^th birthday and three days after winning the Sussex Boys Under-12’s Gymnastics Championship.  I was already a fairly small child and I had lost two stone in three months!  Weight loss is a common indicator of diabetes, as is extreme tiredness, thirst and frequently passing urine.

I was admitted to hospital for two weeks and began being given two injections per day and constant blood tests to monitor my blood-sugar levels. Despite my love for the sport, I gave up gymnastics as I felt it hard to manage diabetes when training. I now do four injections per day and am exploring the possibility of using an insulin pump.  It took me nearly two years to do my first injection by myself – the idea of piercing my skin with a needle made me feel physically sick and very scared. However, I am now a ‘pro’ at this and feel no fear in doing this in public: around friends, on the bus, in the park...

Having diabetes means that high blood sugars cause me to feel very fatigued and have a fuzzy head.  Long spells of high blood sugars are dangerous and may lead to long-term complications such as sight-loss and nerve and kidney damage.  Low blood sugars (‘hypos’) cause me to feel very wobbly, as if all the energy in my body sinks to the tips of my fingers and toes. There is more possibility of fainting with low blood sugars and other symptoms include pallor and difficulty in thinking. The hardest thing is finding the delicate balance between high and low.  Carbohydrate-rich food increases blood sugar and insulin drops it and it’s very hard to get the balance right every time. A lot of intensive education about the condition and all that affects it is important and has helped me immensely.

The intricate management of such a complex condition when trying to live a ‘normal’ life, especially as a teenager or a young adult wanting to conform to social expectations, puts great strain on your mental well-being.  The combination of physical and emotional lethargy led me to a very dark place and I felt particularly isolated in social settings.  My blood sugars were out of control and I had to spend time in hospital and then six months out of work recovering. I had come to a point where I had no option but to look for ways out.  EPP was part of this process.  I set up a support group for people with diabetes, as a result of which I got involved with EPP CIC.  The group has been very successful with people of all ages and I now have friends my own age who have diabetes, which adds a level of support for us all. I have also returned to gymnastics, twelve years after leaving, and have rediscovered the thrill and excitement I get when ‘tumbling’ – and I still manage to control my condition.

I actually began working for EPP CIC before attending a course, as a result of two years’ voluntary work with the diabetes group. When I attended a course in Chichester in April 2009, I was very impressed and it helped me to manage my condition, as well as my feelings and my time.   I really valued the action-planning and the peer support. The programme helped me realise that we are all different and have different concerns but that a lot of the symptoms and effects are very similar, even between conditions.  A lot of it is about respecting others’ needs, especially if you are expecting them to respect yours. The problem-solving skills were revolutionary for me and also transferable to other areas of my life.

I trained as an EPP CIC Tutor in July 2009 in Reading.  I am enjoying working in a field which supports and cares for people and their health. I talk about EPP and its concept a lot, but the best way for me to ‘role-model’ this is through tutoring, especially considering that many participants are in particular need.  I am now co-ordinating the EPP CIC Staying Positive course in my area as I feel that there needs to be an option for young people to attend at a time that suits them.

Now that I have learned how to manage my diabetes, I am able to make plans for the future.  Given my experience with the diabetes group after three years, I would love to set it up as a local charity to better provide emotional support, advice and guidance for the people involved, as well as working with the NHS to improve diabetes care services, with a particular emphasis on young people.  A lot of media coverage about diabetes is related to older and overweight people; this is Type 2 diabetes, whereas Type 1 is much rarer and often more complex to manage.

I feel it is important to share positive experiences in our lives – word of mouth is a powerful thing.  I would say to anyone thinking about coming on an EPP CIC course, if you’re looking for a lifeline, EPP may just come along with a boat.