A Mothers Story

One summers day in 2002 when my daughter was 16 her life changed dramatically as she was diagnosed with Type 1 Diabetes. For both her and me life would never be the same again. I was to begin a journey with a roller coaster of emotions, one for me that will never end.

We were on holiday in Disney Land Paris and in those final days, before being diagnosed, I watched my precious child fade away, emaciated with an unquenchable thirst, and at the end unable to breathe before finally collapsing and being airlifted to intensive care in Paris (a doctor had misdiagnosed gastroenteritis). As she was taken from me for the first time in my life I felt numb, in shock and completely bereft, wanting to wake up from the nightmare. Then, as reality sunk in, my grief overwhelmed me as I sobbed every night for hours, knowing what such a condition would mean for Laura. 

I cried tears of sadness so strong it felt like a physical pain, that lead to tears of anger and frustration. They are tears that still fall when the sadness I carry inside me surfaces, usually when Laura is unwell. Over the years I have tried to rise above my feelings in order to be strong for Laura, who was struggling with her diabetes. I have become an expert at hiding my feelings of sadness and often desperation, tears pricking at my eyes, only to let them fall when she leaves the room.

At the time of her diagnosis I questioned everything. "Why my beautiful baby girl? What did she do to deserve this?" She has always been intelligent, articulate, beautiful and perfect in every way. A gentle child, sensitive and almost ethereal as she seemed to float through life on her own little cloud. It was so unfair that life had dealt her the cruellest of blows. I felt so alone in my sadness and didn't feel anyone could identify with it or help me. No help was offered to me as a mother, maybe because Laura was diagnosed at 16 and was sent straight to an adult diabetes clinic, I'm not sure but inside I was crying out for help. 

I recall the trauma of being told in French that my daughter has diabetes, simply that and no further clarification or explanation, and being presented with a bill for her hospital care. I remember the hours we spent with tears pouring down our faces as my precious daughter was poised with a syringe over her leg, attempting to inject herself for the very first time. It broke my heart and honestly, it will never mend.

Over the following years there were multiple hospital admissions with DKA (diabetic ketoacidosis) as Laura struggled to come to terms with her condition. To me, the smell of ketones had become normal.  Laura would sob buckets in hospital as painful blood gasses and endless cannula insertions were carried out whilst feeling so unwell at the same time. I would be inwardly sobbing but putting on a brave face for my precious Laura. I always wanted to say to nursing staff on discharge - Please don't send us away without help, I can't cope, it's going to happen again. I never said it because I knew deep down that Laura needed to come to terms with her diabetes and asking for help, I couldn't do that for her. 

I felt helpless frightened and full of pessimism for Laura's future. I had to endure hearing my daughter saying things that a mother would never imagine she would hear from her cherished child. Laura would say - My life expectancy has been reduced by 20 years and I may die before you, I won't need a pension. Last year whilst in A&E resus she asked me "Mum am I going to die?" 

On a more positive note, Laura has made me the proudest mother in the world. She has turned her own personal health around and is on a mission to promote a positive attitude towards diabetes in her own quirky and unique way in order to help others. She has come through this painful journey and has grown into an articulate intelligent and beautiful young woman who is phased by nothing. My tears are now tears of joy, knowing as only a mother knows that she will undoubtedly continue on her journey leaving her own very precious footprint, blazing a trail wherever she goes, touching the lives of many as she now seeks out her own destiny. 

Ninjabetic's Mum x 

Am I in charge when DKA strikes?

Catching a glimpse of myself in the bathroom mirror last night I stopped and did a double take. I was shocked to see how different I looked. My usually bright and sparkly blue/grey eyes looked dull and heavy, the skin under my eyes was dark and sunken and the rest of my face was pale and washed out. I looked burned out and realised, as if seeing my refection was confirmation, that I was ready, once again, to give up on the day. It was 7pm.

The previous week I had been in hospital for 5 days with DKA (Diabetic Ketoacidosis). It had only been 2 months since my last admission with DKA and it was the last thing I was expecting, because 2 weeks prior to my admission had been a diabetes dream. My blood sugars had barely been out of my target range (5-10 mmol/L) and the heat wave hadn't caused me any issues with hypos at all. I was content, relaxed and finally feeling like everything was falling into place. 

This recent admission was much like my previous one in May (find that story here). I was vomiting constantly and although my sugars weren't particularly high, my ketones were rising. I was admitted to hospital at 9pm; however it wasn't until 12 hours later that I was put on a sliding scale. 

I'd been told in A&E that I would need to manage my insulin pump and adjust my insulin according to my blood sugar levels. This meant making decisions about how much to increase my temporary basal rates by, how long for and how many units of insulin I should take as a corrective dose. This meant making those decisions whilst on the verge of DKA (or maybe even in DKA at that point), whilst absolutely exhausted, whilst scared and confused. This meant that I could have easily given myself too much or too little insulin, which in my state would have been very dangerous as I couldn't focus on how my body felt. I was then moved to the Medical Assessment Unit where I was told to carry on with what I was doing with my pump, but at that point I had no idea what I was doing. I was so tired I couldn't function - I was very much out of my comfort zone as regards managing the pump.

The next morning I was still vomiting and had been all night. One of the nurses from the diabetes team came to see me and alerted my consultant who came in straight away. He ordered a sliding scale to be put up as my ketones were being caused by the fact that I couldn't keep food or fluids down. Within an hour or two my ketones were lowering and the vomiting had stopped. I was so grateful that my consultant had been there as I was becoming so desperate that I considered leaving. I didn't feel safe at all. 

My sliding scale had been taken down before I'd even attempted to eat anything and I'd been told I could go if I was well enough. I was so desperate to leave (for many reasons) that I went when I should have stayed. This resulted in me coming back in the next morning - straight back into the same room with vomiting, high blood sugars and high ketones. This time it took three hours before any fluids or a sliding scale were put up, despite me explaining that they only way to get rid of the ketones was with a sliding scale. I was asked the same questions that I had been two days before. Had I eaten anything that might have caused the vomiting, had I been around children, what are my blood sugars usually like, how do I manage my pump...? I answered, through tears, and repeated myself over and over again. Finally the sliding scale was set up and finally the vomiting stopped. 

I felt that my insulin pump was being used in place of a sliding scale. I felt that I was being relied upon to treat myself when I was in no fit state to do so. I felt that unless my diabetes team were nearby then I would have been better off at home. 

My consultant was away on the day of my second admission but had phoned to say he was worried and asked one of his colleagues to check on me. Another diabetes consultant came in and reassured me that if I needed anything at all then to ask someone to call the diabetes team who would assist me, then a diabetes nurse came in, then another consultant. Each time I felt more relaxed and looked after, I just wish that 24/7 care was in place and they could have been there from the start.

Last night I gave up on the day at around 7pm, which was fine because I could start over today. I just hope that I still have the energy to carry on if I have another admission, because if last week is anything to go by... I'll need it.

Ninja x