Jane’s Story

30 Jan

This year, on January 22nd, I celebrate my 53rd Diaversary. It was also the night I was supposed to see the Rolling Stones in Sydney. I ended up in Hornsby Hospital in a coma, and my brother used my ticket.

I was expected to die, but the medical gods, and insulin, were on my side. I was 15, and about to enter my final year of High School.

This was what I call the ‘Dark Ages’ of diabetes treatment: no glucometers, no disposable syringes, no ‘human’ insulin. We had to mix wee with water in a test tube, add a Clinitest tablet, and wait to see what colour the mixture turned. Supposedly there were 5 grades of colour. In reality there were two that mattered: blue, and brick orange. Blue showed that you had probably been hypo 2 hours before, and orange showed that you were high 2 hours before the test. Not really very helpful, especially as I nearly always reported to the parents that it was blue. I took one injection a day, mixing Isophane with Regular insulin, and eating to the insulin. No wonder I put on weight!

Yes, I have complications. In some ways this is not surprising when you think of the treatments of those days. However, not all PWDs from this era have complications. I believe that complications result as much from genetic make up as from lack of good treatment. I am not ashamed of these complications. Diabetes, and its complications, make me who I am.

Very early on, maybe 6-7 years after diagnosis, I used to vomit undigested food after meals, or have bloody aawful hypos. Yes, you guessed it: gastroparesis. I suffered with this for 39 years before it was diagnosed by a very bright GP in country NSW. Once I was put onto Motilium tablets, I didn’t look back. Yes, it was a damned nuisance, especially when it occurred at a dinner party at my parents’ home, and other guests thought I was drunk. My husband had seen me like this before, and knew it wasn’t to do with how much wine I’d had. Socially embarrassing, yes. My ‘fault’? No.

Retinopathy. Ah, now’s there a word to conjure with.

I showed no signs of retinopathy until about 20 years after I was diagnosed. This was treated with laser therapy. I was seeing an eye specialist whose practice it was to schedule 3 patients for every time slot so that, unless I got there first, I waited … oh, how I waited. The man was an arrogrant pig who delighted in making me feel that this was all my fault. I hadn’t kept ‘control’ (oh, how I hate that word) of my diabetes, or I must have been eating the wrong foods. I’m sure he enjoyed lasering my eyes – it doesn’t hurt, he’d tell me. Like hell it didn’t! After the first time I took paracetomol and codeine tablets before I went in, and repeated the dose when I came out. I knocked myself out for the day, but this way I could cope with it. He did so much treatment over a period of about 5 years that I now have almost no peripheral vision, and had to give up driving 14 years ago. The good thing is that since 1992 I have no signs of retinopathy.

I had cataracts removed last year. The eye specialist I now see thinks that they were due to diabetes, but he is not the shaming kind of health practitioner. At least now I only have to wear specs for close up work.

Grumps and I share the joy of having had Charcot foot. I think I was luckier than he. I had a slightly sore spot on the top of my foot that didn’t go away. My GP sent me for X-rays, which showed a fracture of one of the small cuneiform bones. I have no idea how that occurred. I’ve always had weak ankles, and can turn my ankle on flat ground. I could have stepped on something that I didn’t feel (thank you, neuropathy), or walked on uneven ground. Who lnows? I certaily don’t. We went to A&E at the local hospital, and was put in a temporary plaster cast an instructed to make an appointment at the fracture clinic at Gosford Hospital. Boy, was I lucky. I got in quickly, and was seen by two of the best orthopaedic surgeons at the hospital. The consensus? Charcot. Plaster for 3 months. This was in an Australian summer; not the best time to be in plaster. Because of the quick, good treatment my foot is not misshapen by Charcot, only by good old osteoarthritis in a couple of toes.

And my latest (and I hope last) complication: Chronic Kidney Disease due to Type 1 diabetes. Aren’t I lucky? This was diagnosed about 10 years ago. It has not progressed, and thanks to my renal physicians, is unlikely to lead to dialysis.

People, I can live with all this. Shit happens. I deal with it with help from a very good health system in Australia. I just thank goodness I am not in the USA or an African, third world county. I am not ashamed of what has happened. I wish it hadn’t, but there’s nothing I could have done, or can do, about it. Yes, I get depressed at times, but that seems to be normal amongst T1s, whether with complications or not.

Here’s to a good life, and to a cure, but I won’t hold my breath for the latter.

Jane Reid

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2 Responses to “Jane’s Story”

  1. Rick Phillips January 31, 2018 at 12:39 am #

    Well, I have seen the stones, and I have to say I hope your brother paid you for the ticket. It was something to see, but 19 years later my ears still hurt when I Jumping Jack Flash on the radio.

    As for complications, I am sorry you have them. I have a few more than I want myself. I hope you are doing well !!

  2. Fiona February 4, 2018 at 7:55 am #

    Jane, I feel your pain re blame and shame. Not helpful. But most of all I agree with you re where we live. It is quite incredible to me that in 2018 people in “civilised” countries cannot get access to insulin. As for those girls in places like India where girls don’t matter… quite awful. I wish I knew how this could change. Thank you for sharing your story of perserverance. I too remember the test the and the funny smell of the tablets. Good luck for the next 53 years!

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