My Journey, Member Stories: Julie

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Here is Julie’s story.

My husband and I both have Type II diabetes. We have just come from our regular diabetic assessments and we’re celebrating the great news that we are both doing really well. But, it wasn’t always the case and it hasn’t been an easy journey.

In 25 years of living with Diabetes I have learned some hard lessons. By putting my journey on paper I hope I can help others out there who are, or more to the point, aren’t dealing well with their diabetes.

Where to start?

It was the late 1980s. I was just 40 years old. The era of the jogger and gym junkie was under way, but I was one of those who put it on the back burner; “I’ll get around to it one day”, or “I’ll start on Monday”. One day and Monday never happened and before I knew it the kilos, all 92 of them had crept on. This wasn’t a good weight for my 153cm height. I was 30+kgs over weight.

By 1988, having ignored all the signs, and there were plenty, I wound up in Concord Hospital with severe, life-threatening Gallstone Pancreatitis. After nine weeks in hospital, and undergoing major abdominal surgery to remove my gallbladder and about a third of my pancreas, and spending a week in Intensive Care following the surgery, I thought I was out of the woods. I almost lost my life (so they told me) because I shovelled food into my mouth faster than I could use it up.

The gallstones; 23 little ones, migrated into my pancreatic duct, which, as I understand it, is what the digestive juices travel through to get to your stomach. They blocked the duct to the point that the digestive juices were fed back into my pancreas and caused what is called a pseudo cyst. Those digestive juices are so strong they can rust a safety pin in a matter of hours. This I know because the drains in my abdomen, which were inserted following surgery, were secured to my skin by surgical sutures and then safety pins, so they (the drains) wouldn’t travel back into my body. The safety pins had to be replaced every day because of the corrosion. The drains were in there for a couple of weeks until the doctors found where the expected fistula would form. There were four drains with the diameter of a small hose with holes punched in the sides. They were shortened every day, which was definitely not a pleasant experience. I had to be medicated before they could shorten them. For all of the nine weeks I spent in hospital I wasn’t allowed to eat or drink ANYTHING at all. I was fed through a tube in my chest. This necessitated a daily blood test to make sure the food they were feeding me had everything balanced correctly.

If you think I told you all of this just to scare you, you’re right. I wish someone had scared the pants off me before I’d reached this stage. It was a life-changing experience; one which I never want to go through again.
While I was in hospital I lost count of the tests, scans, you name it, that I underwent. After nine weeks I became so institutionalised that when it was time to go home, I was actually quite apprehensive. The hospital had become my security blanket. Up to the time they hooked me up to the feeding tube, I lost 10kgs. Once on the feed my weight stabilised. Within 6 months of leaving hospital I had put all 10kgs back on. “Stupid” you say…………you bet it was!

Almost exactly one year later in March 1989 I went to my doctor for some other minor ailment, which I cannot recollect, and a subsequent blood test revealed that I had become a Type II diabetic, no doubt because of the operation. I sat in the doctor’s surgery only half listening to what he was saying to me about what would happen next. He spoke about diet and exercise and the ramifications if I didn’t take better care of myself. I drove home in a daze.

My world had come crashing down around me.

I rang my husband in tears and sobbed out the news to him on the phone. I thought; that’s it; everything is ruined, my life will never be the same. I felt like a freak. When I finally calmed down, I knew I had to do something. The diagnosis had scared the life out of me. I immediately went on a diet and over the following 6 months I lost a total of 22kgs. I thought I was doing okay then the big ‘D’, denial, set in. Because everything was going so well, I thought I had it licked and started slipping back into my olds ways. Not all the time, just making
excuses now and then for that piece of chocolate cake; its okay it’s my friend’s birthday. One piece won’t hurt….

No; one piece occasionally won’t hurt. But stupidly I thought I could get away with it. I thought; I can lie to the doctor; I can only measure my blood sugar when I know its going to be good; don’t exercise; how will the doctor know……..all the sneaky things that I’m sure other diabetics in denial have done and still do. I doubt I have the market cornered on stupidity.

Within 5 years I was on oral medication. My doctor told me about the course that diabetes can take pointing out all the complications that can occur; how far down the track these things can be reasonably expected to happen if I don’t take care of myself, and how to avoid them. I think I only half heard what he was saying. Won’t happen to me I thought. Huh, who did I think I was kidding? No one was going to wave a magic wand and ‘hey presto’ it will all go away. All of these situations combined added up to a potential disaster waiting to happen. By 2000 I was on twice-daily Insulin injections.

No one can take the journey for you. No matter how many people, professionals etc. tell you “I understand” or “I know what you’re going through”; they don’t! The evidence they have is, at best, anecdotal. The can observe what’s happening, but they aren’t living it! People can sometimes make you feel like you are a disease, not a  person with a disease.

Diabetes is a chronic condition that needs very careful personal management. There is a wealth of advice and any number of professionals out there to help you, but first and foremost, you need to learn self management. It’s a real juggling act. After 25 years I reckon I could get a job with the circus. It’s a balance of food in, and exercise out, but it’s just as important to take care of your emotional and mental health. It’s not uncommon for long-term diabetics to become depressed. So, if you need to get a counsellor; then DO it. I have talked about my health many times with friends and while I know they care and they do listen, it can be very wearing for them as well. I have an on-line counsellor who I can email at any time.

Real or emotional stress can affect your sugar levels, and worrying about yourself all the time is only adding to the problem, so take it easy and don’t be so hard on yourself. Learn to walk away from stressful situations. Or better still don’t get involved in them in the first place. If it sounds like stress, it probably is. I hate to use clichés, but you need to stop and smell the flowers now and then.

One of the most important lesson I have learned, through much trial and error, I might add, is that continuity of care and finding the right doctor or professional for YOU is paramount. Many, many times I have come across a professional who I feel is just ‘going through the motions’ or ‘going by the book’. Not two diabetics are exactly alike. YOU are an individual and so is your condition. If you aren’t being treated like an individual, look elsewhere. It took me a long time, but I finally found a specialist who has my best interests at heart. I went through a period of adjusting my insulin to try and get my sugar levels down and I was able to call him on his mobile phone each week and we would adjust the levels over the phone. He was amazing.

In 2002 my brother, my mum and me all had hearts issues within three weeks of each other. My brother had a triple bypass (he is not a diabetic), I had a quadruple bypass and my mum had a mild heat attack in between the two of us. This would probably have happened whether I had diabetes or not, but I have no doubt my mismanagement of my condition brought it on earlier than I would otherwise have expected.

Post surgery I regularly visited a Cardiology Clinic at my local hospital and saw a succession of Registrars. If you aren’t seeing the No 1 specialist on a regular basis you have every right to ask to see him instead of yet another Registrar. Because I didn’t do this I ended up wrongly medicated for two years. I now have an excellent Cardiologist who I see in his rooms and he bulk bills me because I am now a pensioner. So if you have to shop around, do it and don’t let anyone talk you out of it.

Lesson One:

Be proactive where you’re health is concerned. Nobody is going to take better care of you than YOU!! You need to get to know every inch of your body better than your doctor does. Research everything, but make sure you go to reputable sights. Your doctor can probably help you with this. Find out about the medications you are taking. Sometimes a doctor or chemist can miss the fact that a medication may interact badly with what you are already taking or an unrelated condition to your diabetes. They are often so pushed for time that the can miss things like this. They are, after all, only human. So, LOOK IT UP! The same goes for when you’re hospitalised. More often than not the nurse or doctor treating you has only a chart at the end of your hospital bed to go on. If you aren’t comfortable with something, ask questions. If you know something definitely isn’t right. SPEAK UP! The nurse or doctor will, more than likely, thank you for it. Don’t assume that they are always right.

Lesson Two:

If you’re happy with your doctor or diabetic professional/s, then stay with them. Continuity of care is just as important as having the right person looking after you. A bit of a contradiction, I know, when I’ve just told you that you should search for the right professional. What I’m saying is; look for the right person then stick with them. I am very lucky that I have an excellent Primary Care GP who I have seen for 32 years. I have actually been with the same medical practice since I was born. I followed them to four different locations in the same suburb, over the years. I will travel miles to go back there rather than trust myself to someone I don’t know. They have become like friends, and we all know that a friend will take better care of you than a stranger. Friends have a vested emotional interest in you. It counts!

So hang in there. It will get better, but it’s up to you to work closely with the people concerned with looking after your health. Who knows YOU, better than YOU??
Julie