Jayne's story: dealing with Charcot foot

I was diagnosed with type 1 diabetes when I was 30. I had developed an infection but my body began to fight itself, and that’s when the doctors picked up my condition. 

My mum had type 1 diabetes too, and I remember how I used to watch her injecting herself every day when I was younger. But that’s all I knew about diabetes really, so I signed up to a Dose Adjustment for Normal Eating (DAFNE) course to learn more about my condition. It was quite classroom orientated back then, and it didn’t really change my mindset. I thought I was young and invincible. 

When I was diagnosed, I was told to start injecting insulin. But I thought that I would be able to lose weight if I didn’t take it. That’s why I was really irregular with my injections for two to three years after my diagnosis. I would go days, sometimes a week, without taking any insulin, but I thought I would be fine.

I lost a lot of weight – I think I was about seven and a half stone at my lightest. And in 2005 I went into diabetic ketoacidosis (DKA). I had been vomiting up blood and was rushed to hospital. That was my first real warning that my body wasn’t coping and things had to change. 

I was in and out of hospital in the following years, but it was in 2009 that I first started to notice problems with my feet. I had travelled to Australia for my niece’s wedding, and I was walking about in the heat in just my sandals. I began to develop blisters, and so when I came back home I went to get them checked out. It was only on my third visit that a different doctor said they were ulcers and sent me to the podiatrists. 

The podiatrist tested the sensitivity in my feet using a blunt pin. I couldn’t feel much, and in 2010 I was diagnosed with Charcot foot in both feet. 

I wore protective boots to support my feet, but my left foot had started to change shape and I needed surgery. So, in 2011 I had my first operation. Since then I think I’ve had about six or seven more. 

It always felt like if it wasn’t one foot, it was the other. In 2015 I developed another ulcer, and in 2017 I was told that the metal work in my right foot had come out of place. They said they couldn’t operate on the foot anymore, and so last year my doctor recommended a below the knee amputation. 

I really didn’t want an amputation and so I decided to get a second opinion. The doctor at Kings College Hospital in London took a look at my feet and said we could try two more operations. 

I had the first one in September, and the second at the beginning of November. I was quite nervous beforehand. The doctor said afterwards that it was the most complex operation he’d ever done. I was supposed to go home in between them to recover, but because it was such a complicated operation the doctor wanted to keep me in hospital to check on me. 

I was in Kings hospital for nearly three months. I stayed in a little side room, and my husband could only visit on weekends because he was working. After a while I had to ask the nurses to leave the door open because I began to feel claustrophobic. 

When I got home after being discharged in December, I noticed that I was beginning to feel more anxious and depressed. I thought I had coped pretty well with everything going on in my life up until that point; I’d lost my sight in left eye and had a kidney and pancreas transplant whilst dealing with my foot problems too, but sitting at home took its toll on my emotions. 

I wasn’t sure how long I’d have to be in the plaster, and not being able to exercise was hard. I used to enjoy going on walks and hikes with my husband, but that wasn’t possible anymore. And I could feel myself putting on more weight because I couldn’t move around much. I spoke to my doctor about how I was feeling and I was given anti-depressants at the beginning of this year.

Coping during the coronavirus pandemic

I still feel the anxiety creeping in now and then, but I am trying to stay positive. The past few months have actually been a nice change for me. Although I have been shielding because of coronavirus, my husband has been working from home and it means I’ve got company, even if he is in another room. 

The weather has also been quite good, especially over the last few months, so I’ve been able to get out into the garden and enjoy sitting outside. And lots of my neighbours are around too, so it’s been nice to speak to people I usually wouldn’t get a chance to see.  

Looking forward

I went into hospital for my appointment a few weeks ago and got to see the new shoes I’ll need to wear once my feet are out of plaster. I was measured for them a while ago, but because of the virus this was my first time seeing them. They’re a bit chunkier than I expected, but I’m looking forward to getting them on and starting to move again. I want to be up and about by Christmas, that’s my target.

I think my advice to anyone else with diabetes would be to listen to your doctors as they know what they’re talking about. I’ve learnt that I’m not as invincible as I thought I was, but I hope that my story can encourage others to take their condition seriously.