'Diabetes was the gang ring leader'
I am married and have two young children (7 and 5 years old, pictured below). I previously worked as a probation officer in two prisons and in the community, but I had to retire due to poor health in 2010.
I was diagnosed with Type 1 diabetes when I was seven years old. Obviously diabetes is all I know. It is imprinted upon our family more due to the strong 'diabetic family gene' which four of us have inherited. As a child this was how things were, two injections of Humilin I and S a day (pigs insulin). orange syringes, small glass vials, blood monitoring sticks that took one minute to read the blood and then after wiping it away you get your reading after one more minute. It sounds archaic now; blood monitoring machines were only seen on the hospital wards.
As I remember I cannot identify an area in my life where diabetes held me back or prevented me from doing what I wanted. I was a very active child, taking part in the local scouts group and marching band, jogging, attending a gym and aerobic classes, hiking in the Lake District and enjoying my teenage years as any other girl would do.
During my teenage years I developed anorexia. Probably the worst condition for a diabetic to have. However, I had an extra advantage to all the other anorexics out there. I found out, by accident, that if you don’t take your insulin you will lose weight, even if you eat loads and loads. What an amazing thing, the more I would eat the more weight I lost.
At this point in my life my diabetes had become my ‘frienemy‘. My best friend as it helped me feel happier as I was losing weight, but my enemy in that it was ravaging my body. I became very ill and began to experience many of the cruel side effects of this condition, probably sooner than I should have done due to this predicament.
As I fell deeper into this horrible place I began to feel bullied. A gang was forming and they focused only on me. The ring leader was the diabetes, he gave the orders to the others in the gang and they obeyed with no questions asked. One of the other gang members was the neuropathy pains. Excruciating pains in my feet, every night all night, then sleeping through the day to recover. I was prescribed strong pain killers which became a must for many years. No hot baths were allowed, and if I did I would always hang my legs over the side to avoid triggering the pains.
In 2005, when I was 24, I gave birth to our first son, Sami Dil Mistry, 6lb 15oz, by planned C-section. When I discovered I was pregnant everything changed. I had previously taken part in the ‘Carbohydrate Counting’ system of managing my diabetes which in theory would have been so beneficial to me if I had decided to use it. During the pregnancy I used this system strictly. I wrote down exact calculations, correction ratios, and calculations of background insulin doses... It worked a treat. By the end of the first trimester my HBA1C was around 6mmol/l, amazing as six months prior to this it was hovering around 16mmol/l on average. I was frightened into thinking I would have a diabetic cherub. A large baby due to the high blood sugars of the pregnant woman. As you can see by the weight of Sami I laid this myth to rest and showed it can be done but it does take a lot of motivation. When I was beginning the second trimester I noticed my eyesight was deteriorating rapidly.
I would drive to work and this was a 45 minute journey so I needed my vision to be top notch. I was told that because the change in blood sugar levels was so immense (in a good way), the vessels behind my retina had begun to haemorrhage. I was taken into a room for my diabetologist to check my eyes during a regular clinic appointment. He asked my husband to join me in the room afterwards which made me think he had bad news for me. I was sent straight down to the Ophthalmology Department as an emergency. After several tests we were called back into the room at 6pm.
I had a condition which is common among the diabetic community called retinopathy. This is severe haemorrhaging behind the retina which would need extensive laser therapy to preserve my eyesight, however this would not guarantee my eyes would return to normal. I had twelve sessions of laser therapy on both eyes. This was a very painful procedure. I would have numbing drops into each eye, then I would have a plastic optical lens placed onto my eyeball. My ophthalmologist would then hold my eye open with this lens and direct the laser into my eye, targeting the bleeding vessels. It is as though you were using steri-strips to close a wound. The laser would prevent the vessels from continuing to bleed by helping the vessels to clot and close the lesions on the vessels. This procedure left scars on the vessels but it worked very well for me.
I was advised to have a C-section rather than a natural birth as any extreme pushing may make the vessels behind my eyes erupt leaving me blind and unable to see my newborn. This was a horrifying situation for a first-time mother to be in. Also, for a diabetic person who has worked tirelessly to ensure the best incubation place for their newborn, despite the emotional torment I went through at first. However, hree months after the birth my eyes began to return to normal and since then I have been completely discharged from the hospital for 2 years now. I have regular, routine diabetes eye checks but other than that my sight is of no concern to me or the doctors!!!!!
Around the time when I had Sami I fell over and twisted my ankle on some rough ground. My ankle really hurt and began to swell. I attended the A and E department where I was told the x-ray is fine and the swelling is due to the oedema caused by pregnancy. Five days later I was admitted for my C -Section. This was postponed to0 the following day as my foot continued to swell and they wanted to run some tests to check all was ok.
For the next four months it became more and more difficult to walk and wear shoes. Thank goodness for crocs, these were the only things I could slide on my feet. My foot was not painful, but it wouldn't be to a diabetic as the nerves do not exactly function as they should in your feet. My heel bone was completely shattered and the whole of the back part of my foot and fell apart. I had also developed Charcot’s foot as the joint had begun to disfigure my foot. I was scheduled to have emergency surgery the following week.
My surgery went fine and I was home a week later with a leg full of metal. Almost two weeks later my foot became hot, I had a temperature and felt very ill. I was rushed to hospital with a severe infection. I was in hospital for about 3-4 weeks. My leg wounds were kept open and I went down to theatre every other day to have my foot washed out and antibiotic beads to be placed in the wounds. After a week of this and IV antibiotics there was still no improvement.
The doctors began to mention the word amputation. A very scary word indeed which most people would never wish to hear. I had a visit from a prosthesis nurse to prepare me for this possibility. It would not be too bad. We would have to move house so I could sleep and wash etc downstairs, and I would not be allowed to return home until this was organised. And with a 12 month old baby in tow!!! I narrowly avoided this and was sent home with a vacuum pump to rid my foot of all of the 'sluff' which can accumulate in wounds like this. Nine months later I returned with another raging infection. All of the metal was removed as they believed it was this plus the diabetes which was triggering the infection. Amputation was approaching faster this time.
Read the second part of Rebecca's story