'After 25 years of living with diabetes we are now happy and controlled'

Jenni looks back on a tumultuous time with Type 1 diabetes as she marks 25 years of living with the condition.

Jenni is now on top of her diabetes.

My name is Jenni and I am 30 years old.  I recently marked a quarter of a century living with Type 1 diabetes. Being diagnosed at 5 years old is somewhat of a blur.  

My parents were both doctors and spotted the signs early. I was extremely lucky with my diagnosis in that I was never in hospital and Mum and Dad (along with the assistance of other HCPs) did a phenomenal job of managing it at home.

I remember practising injections in to an orange and continuously pricking my dad’s fingers so I could ‘get used to’ the finger pricking device worked. 

They were incredible at not letting T1D stop me doing anything that all my friends were doing and this is a philosophy I have carried through my life so far and still aim to live by today.

Throughout the tears, Type 1 diabetes (T1D) and I have had what one may call a ‘tumultuous’ relationship.  Living at home with Mum, Dad, two younger sisters (one of whom also has T1D) and the family dog, we plodded along, eating healthily, popping to clinic every few months and keeping (most!) blood sugars in target range resulting in good HbA1C results.Then..University!  

Who doesn’t go a little crazy at uni, all this freedom is suddenly thrust upon you and the world is your oyster! Many late night parties and the accompanying alcohol and chips and cheese meant that my diabetes management was not quite as tight as it once had been.

I lived the university dream and neglected my diabetes.

Jenni

I rebelled against ever actually doing a finger prick and very much went for the ‘wing it’ approach which I am sure many fellow T1Ds can identify with completely.  

Hba1C results crept up slightly but by some small miracle, they did not ever get to a level deemed ‘unacceptable’ by HCPs so I was let to carry on neglecting my diabetes and living the university dream.This strategy continued until I was 27 when I decided that enough was enough and I needed to take control again.

I started to test my blood sugars more regularly, take a bit more notice of what I was eating and drinking and generally just tighten up on my control. I was feeling great, I had more energy and was loving life.  

I was feeling very proud of myself for taking back control until one day I started to feel a ‘tingling’ in my left foot. I did my best to ignore this but in the space of about a week, I was suddenly in constant and excruciating pain in both feet.  

Being the ‘independent’ person that I am, I tried to manage this myself at the start. I took myself off to the GP who prescribed some tablets to take once daily and I thought (hoped) that would be the end of it.  Sadly, this was not the case and after about six weeks of sleepless nights, pacing the floor for hours on end to try and distract myself from the pain. I caved, called my Mum and, the day before my 28th birthday, I hopped on a train back up home to Liverpool.  

This was the start of a fairly difficult three months for the whole family. I was quickly diagnosed with Insulin Neuritis, a form of neuropathy which can often affect newly diagnosed T1Ds as they suddenly gain control of the disease and also people, like myself, who had maybe not been the best with control and had suddenly improved.  

My first reaction was the unfairness of this – if I had stuck with my ‘winging it’ strategy, would this not have happened?

Various drugs were prescribed to try and manage the pain with the promise from all HCPs that this was temporary and would resolve itself in time.  

Due to a family history of very poor drug tolerance, I reacted badly to everything I was offered and ended up in hospital twice with malnutrition due to the fact that they made me so ill. The light at the end of the tunnel became visible around Christmas time when we started to see a marked improvement and it became apparent that we had finally found the right drug to manage the pain.  

Recovery was then fairly quick and I was delighted to be back at work in the January and completely off any medication by September – a full year from when it had all started.

So that is me, I am now absolutely on top of my diabetes management and on the waiting list for an insulin pump in order for me to tighten my control even more.  

I do not in fact remember a time in my life when I didn’t have to check my sugar and inject insulin therefore in a way, the 25 year milestone is not actually particularly big or important.  

Diabetes has always been a part of me, it does not define me. We have had what one may call a tumultuous relationship over the years and I am pleased to say that after 25 years of sticking together through thick and thin, we are currently very happy together and enjoying life to the full.