‘I concentrate on the things I can still do’
Published on: 09 Oct 2015
The number of diabetes-related amputations each week in England had reached an all-time high of 135. Downend’s Jane Knight knows only too well the realities of losing limbs to the disease. She tells Jayne Taylor her story and urges people who suffer from diabetes to take action now to stop it from happening to them
AT the age of 10 most young girls have nothing to worry about other than getting their homework in on time and what to wear at the school disco.
Not Jane Knight. She hadn’t even reached senior school when she learnt the harsh realities of living with diabetes.
Injecting herself with insulin and testing her urine soon became as normal a daily ritual as brushing her teeth and combing her hair.
“18th of December 1973,” says Jane, whose razor sharp mind recalls her diagnosis as if it were yesterday.
“I can remember it vividly. Leading up to that date my mum took me to the doctors several times because I was getting thinner and thinner, going down to four stone. I was drinking loads, I was thirsty all the time. I’d come home from school and just stick my mouth under the tap; I wouldn’t even bother to get a glass.”
Jane was also feeling tired and sick but her doctor put the symptoms down to the fact she was growing.
“After the third visit my mother insisted they did a urine test to see if I was diabetic.”
The following day, diagnosis as a Type 1 diabetic confirmed, Jane found herself in Bristol Children’s Hospital where she stayed during Christmas.
You could be forgiven for thinking a 10-year-old would had been devastated to spend Christmas Day in hospital but Jane set the tone for how she would cope with that and all her subsequent hospitalisations.
“People donate presents to the hospital so I’d never had so many Christmas presents in my life! I had Christmas dinner with all the nurses - it was amazing!”
Her cheerful ‘business as usual’ attitude may have just saved her sanity because in the future she would face 40 operations, including multiple amputations.
“I’ve always accepted things that have happened to me,” Jane said.
“I’ve thought ‘Right, that’s happened to me and now I’ve got to get on with things’. You either get on with things or you don’t, and I have always got on with things.”
Jane, an only child, coped well through her teens, wanting to prove herself. She
attended ballet, tap and jazz dancing classes as well as going to Brownies and Guides. She was playing badminton five times a week, played the violin in an orchestra and went to youth club.
“I was a really, really active teenager. My diabetes didn’t stop me at all.”
As long as she injected herself with insulin, a hormone to control blood glucose levels, and tested her urine for sugar three times a day, Jane was in control. Or so she thought.
Back in the 1970s there was a lot of ignorance about diabetes so when Jane was told by medics to eat a family-sized bar chocolate when exercising, that’s what she did.
“We now know that’s not needed, today you would just have a row of squares or a small sugary drink. But I would have my large bar of chocolate when I exercised, which was virtually every day, so consequently my sugar levels were running way too high. That’s when the damage started.”
Jane, who is now 52, went on to study fashion textiles at university and after a few dead-end jobs started her own ball-gown hire business in Clifton.
“The shop would be so busy, I wouldn’t have time to eat so I would just grab a can of Coke but I was doing even more damage to myself. I know now that the food I was eating wasn’t at all healthy.”
Jane found herself being invited to balls and thought nothing of wearing high shoes with her elegant gowns. But, because people with diabetes have little feeling in their feet, blisters can turn to ulcers which can become infected. A diabetic’s immune system can’t fight back by producing white blood cells in the same way a healthy person’s would.
“One night after a ball an ulcer which had developed was so bad I ended up in A and E. The doctor who saw me said ‘You’re going to have to rest this because if you don’t you will end up losing your leg’. I just thought that happens to other people, it’s not going to happen to me.”
She was plagued by foot problems over the next few years but because she considered herself fit and healthy she paid little heed to them.
After a particularly stressful time when her boyfriend at the time ended their relationship two months before they were due to get married, Jane moved on with her life, eventually meeting her future husband Ian on a blind date.
When she was 18-weeks pregnant, Jane’s appendix burst and she lost the waters around the baby. Thomas was born in August 1992 at 28 weeks, weighing just three pounds. He was blind and Jane was to find out a few years later that he was also autistic.
Doctors would take no chances when Jane and Ian decided they wanted a brother or sister for Thomas.
“I had to go to pre-conception clinics at the hospital for two years before they would even let me get pregnant again.”
Jane managed to get to 32 weeks with Alex but had liver and kidney failure as well as pre-eclampsia. But despite the problems endured by Jane, Alex was born fit and healthy.
Jane gave up her shop to spend more time at home with her sons, eventually qualifying as a complementary therapist and working part-time around her boys.
“I carried on trying to look after myself the best I could. I thought I was doing OK but gradually I started losing sensation in my feet. I always walked around bare foot, which as a diabetic is one of the worst sins you can commit. Generally diabetics haven’t got any sensation in their feet so if you stand on something, you wouldn’t even know.”
It was only when she was being examined by vascular surgeon David Mitchell to test her suitability for a kidney transplant, she was alerted to the fact something was seriously wrong.
“He examined my legs to feel for a pulse to see which was the strongest side to put a kidney in,” Jane explained.
“He told me he couldn’t feel a single pulse in my right leg and could only just feel one in my left leg.”
The following week Jane underwent an angioplasty where a balloon was blown up in her arteries to re-inflate them.
“The diabetes and dialysis I was doing meant my body was taking calcium out of my bones and dumping it in my arteries. Basically my arteries were being furred up with chalk so they had to crack that to get them to open again. Basically it was too little too late.
“I had a toe injury and my toe turned black and had to be cut off. Then the next one went. Then the one next to it. It was like I had a pig’s trotter for a foot. I actually named him Rodney after Rodney Trotter.”
A plaster cast was put around the bones in Jane’s foot but because the cast was rubbing on the back of Jane’s heel, an ulcer developed.
“It got worse under the plaster cast and started eating away at my foot. Eventually Mr Mitchell said it wasn’t going to heal and it would be better if they cut my leg off below the knee.”
The operation, on August 18, 2004 at Southmead Hospital, went to plan and Jane was back out of hospital in just five days.
Within six weeks Jane had a prosthetic leg fitted.
“A few weeks later I was walking around the Mall shopping on it. I thought, ‘Yeah, this is great’. I can honestly say I never even cried about losing my leg. I just thought I can still walk, still go to dance classes and still drive.”
The following April Jane had her other leg removed below the knee, the result of another ulcer which would not heal.
“I took a little bit longer to heal this time but got another prosthetic leg so I could still walk around and drive. I was still living a relatively normal life as a mum with two boys.”
In 2009 Jane underwent a successful kidney transplant which made a huge difference to the quality of her life.
“I’m eternally grateful to the family of the person who donated their kidney. It changed my life. I was so ill before and picked up every infection going. I instantly felt amazing. It was like I’d won the lottery.”
Her euphoria was short lived when Jane was given more bad news. An infection led to the amputation of several fingers until eventually her right hand was so infected that her arm had to be removed below the elbow.
“The surgeon’s words were ‘We’re sorry we had to take it that far up but your arm was mush’.”
This time Jane found it harder to take in her stride.
“It was the first time I got upset. Everything I did, I used my hands. I played the violin, the piano, I painted, sewed and knitted. I had to learn to adapt to doing everything left handed.”
And adapt Jane did, which made it an even bitter blow when, in December 2010, Jane had the little finger of her left hand removed. Her index finger was next to go gangrenous and that too was cut off. Her surgeon managed to save her middle finger by just cutting the end off but that eventually that too had to be completely removed.
“I now have a whole thumb and a one centimetre stump on my ring finger. I’ve just learnt to adapt,” said Jane.
Earlier this year Jane had to have her left leg amputated above the knee.
Jane will be wheelchair-bound until she gets her full leg prosthesis in the near future.
She has a cosmetic arm for her right side which she uses to drive her wheelchair.
“I deliberately don’t think about the things I used to do like dancing and badminton; I concentrate on the things I can do. I still cook and weave with help. I’m a member of Bromley Heath WI and I’m organising a charity ball for next April in aid of Mothers for Mothers. I make sure I get lots of vitamin D by having 15-20 minutes of unprotected sunlight every day. I grow as many fruit and vegetables as I can and keep five chickens. I eat all organic or from the farm shop and really have got a healthy diet now.”
Jane urged people with diabetes to check food labels as there are hidden sugars in so many foods.
“There are 135 amputations because of diabetes a week but 80 per cent of those are preventable. There’s lots of information, support groups and educational courses out there today to help people with diabetes. It just wasn’t there when I was diagnosed. People need to start taking responsibility for their own health.
“It’s also really important to buy comfortable, supportive footwear and not wear heels that are too high because that can cause blisters which can lead to ulcers and infection.
“A lot of people are in denial, like I was. They think an amputation could never happen to them but I want to tell them ‘Yes, it can happen to you but there are things you can do to minimise that happening’. If I can stop just one person from ending up like I have, I’ll be happy.”
Diabetes occurs when the body loses the ability to use or make insulin, a hormone that helps regulate the amount of sugar in blood.
Diabetes UK says more than 3.3 million people have some form of the condition, up from 2.1 million in 2005.
There are two main types of diabetes – Type 1 diabetes and Type 2. The latter is far more common: 90 per cent of all adult cases in the UK.
Up to five million people in England are at risk of developing Type 2 diabetes, which is linked to diet and obesity.
People with Type 1 generally develop it in childhood, as Jane did. If you are diagnosed with Type 1 you will need insulin injections for the rest of your life.
The inability to control the level of sugar in the blood can lead to blindness and amputations. Diabetes causes 22,000 early deaths and costs the NHS more than £8bn each year.
People with diabetes are 15 times more likely to undergo amputation. Key factors that usually predispose ulceration and ultimately amputation include neuropathy, circulation problems, foot ulcers and Charcot foot (a condition which weakens bones in the foot). All people with diabetes should have education in footcare.