My experience of living with brittle diabetes and other conditions: Louise Sowter


Let me introduce myself. My name is Louise, I have been a diabetic for 36 years and I’m 47 years young. My journey as a diabetic has been bumpy. It all started out as a teenager.

I went to a wonderful place called Langwith Lodge. Back then, it was where newly diagnosed diabetics went to be educated. I had to learn how to sterilise needles and syringes, there was no modern stuff then. I experienced hypos and learnt how to count carbs. It was a fabulous learning platform and, although terrified, I had a grip on this thing called diabetes. I got teased at school with the nickname teabag as I was dehydrated (like the teabag advert). However, I didn’t let it hold me back and lived normally. My parents didn’t wrap me in cotton wool and I did all the usual teenage things.

I went on to become a nurse, and when I entered the nursing school they made me register disabled, insanity I hear you scream. It was old school nursing and they saw my diabetes as a disability, though I didn’t.

Everything was wonderful, till I went on a trip and I was in Goa when I got bit and got malaria. However, other things were going on and everything took way too long to diagnose.

In the space of six months, I was showing all the symptoms of long-term diabetes. Neuropathy head to toe. Couldn’t feel my legs. Gastroparesis, neuropathy bowel, and bladder. I had liver damage, heart damage, and the list goes on. I had strokes. Doctors just couldn’t understand what was going on and why I was so sick.

My well-controlled diabetes became brittle, one day sensitive to insulin, and the next, resistant. I was one of the first in the UK to buy an insulin pump. Friends helped me buy it and helped fund running it and life got better. How lucky people are today getting these through the NHS.

I struggled and was so poorly for years right back from 2000 and in 2011, my prayers were answered because we had come to the end of the line. I was given a gastric pacemaker. It hasn’t been a total success but I have periods when I can eat well and don’t spend 24/7 talking to the porcelain. The other problems I have still make diabetes management a nightmare. This daily battle is a challenge but I meet it head on and most of the time the victory is mine.

I have always had brilliant support from the endocrinology team. They realise how difficult my condition is and the management is my own with them there if needed. I’ve been on the pump, off the pump, and wondering if to go back on, decisions, decisions. It may be simpler if I got on with the consultant that now runs those clinics and I can never see that happening. I’m grateful for my medical background. It has helped me navigate through a minefield of Drs, dietitians, and information thrown at me over the last 18 years.

The one thing I can say throughout, what has pretty much been a nightmare, is that I’ve learnt to think positive. To smile, to talk, and to share. I have met the most amazing people while ill. Gained as much inspiration from them, as they say they have got from me. I always try no matter what, to put on my makeup and get dressed. No matter how bad the day is. Even in intensive care after coming out of a coma, I asked for my makeup bag and perfume.. hehehe.

When I was diagnosed, I was told about a book called Metal Jam: The Story of a Diabetic and I have never forgotten it. And also, I always I believe this ‘we manage diabetes it doesn’t manage us’.

I’m excited that I will be able to share my experiences with diabetes and the other complications I have, which are not directly related to diabetes, but many suffer as a result. Also, I would like to prove that diabetes isn’t bad, it’s just something that you get along with like brushing your teeth in the morning, taking your insulin and fuelling up.

Like I said at the start, I’ve had this for 36 years and I hope to have many more. I think of the positives. Drs keep a check on my eyes and my heart. I’ve worked as a nurse, had empathy for patients being diagnosed, and most importantly my life is good. My life is normal, and nothing holds me back.

I hope to hear your comments on my future posts and please look out for my pics, you will get to meet my little dog. Or who knows, when I’m having a hypo. See you soon xx

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