Why did the insulin die in my pancreas?

When I first started writing for “Why did the Insulin die?”, a girl with a smile from the angels replied to me and we used to write to each other every now and then. She used to make me feel really special about myself. She was at Uni, so I knew she was busy a lot.

On Sunday, I asked Mum if we could look at her blog. (Her name is Daena.)

It said that it was closed down. I was so sad, as I knew I would never probably find her again.

She lived in Australia for a long time, so as far as I’m concerned, she has a big piece of Aussie in her.

Would you believe…this morning, I got a message from her! I was actually yelling I was so excited!

She has changed her blog name!

I decided that I should let everyone know her new blog name, because apart from a few others’, she is one of my favourite bloggers. She is real, and honest: I can tell from her writing.

Her new address is:

www.sugar-free-musings.blogspot.com

(Her old one was www.musesandbabbles.blogspot.com) If you go there, you are IN THE WRONG PLACE!!

Thank you so much, Dae, for not forgetting me, and you are now on my blogroll, so that other people can find you, too!

Just so you know, Dae has Type 2 Diabetes, but she still feels hypos and hypers and has to take medication. She goes through a lot of what we all do. She is only a little bit younger than my mum, and she is a really awesome girl.

Please go and have a look at her site: She has a very distinctive writing style. She never uses capital letters. It looks very effective.

Thanks everyone!

www.sugar-free-musings.blogspot.com

I’m so relieved that you are back Dae!

I was blessed to meet Liz Yarker by sheer accident just over a year ago. From our very first conversation, we immediately clicked. In fact, two hours later, I was so overwhelmed that I had just listened to a stranger describe my life as a carer of a person with Diabetes. We silently established a strong and incredible friendship that night.

We still have that special “chemistry”, Liz and I. We are both passionate Diabetes Advocates, and would go to the ends of the earth to make life easier for each other. Liz’s husband, and my dear friend James, suffers from an incredibly complex, rare, challenging and cruel endocrine condition, known as APECED. He has numerous life threatening conditions- Type 1 Diabetes and Addison’s Disease to name the worst of many. His life depends on constant insulin infusions, and consuming countless tablets a day. Liz has recently had to make the difficult decision to stop working, as James’s condition has become even more vulnerable, and without her constant care, she was petrified of coming home and finding him unconscious..or worse. She would often have to call work just as she was due to commence and inform them that James had suffered a severe hypoglycaemic attack and needed constant care for the rest of the day.

Fast foward to the past month…more health concerns have arisen. Liz and James are absolutely inspirational considering the devastating news that they were bludgeoned around the head with. Liz and I are both young women, who have bright futures ahead of us. However, it has been only recently that we realised that we are very much trapped…alone..and isolated. (Liz lives at the bottom of the Southern Henisphere in Tasmania, whilst I am residing near Brisbane. We rely heavily on MSN Messenger to communicate!) We compiled these questions together, and answered them individually. Being a carer of a 24 year old man, or in my case, a seven year old boy may sound like a slight inconvenience. This interview has been compiled and published to crack that myth wide open, and so that others’ can get an insight into what we do to on a daily basis to keep our loved ones’ alive.

Lizzie, describe yourself in five words..
Impatient, friendly, reliable, loving and caring

How has being a carer for James changed who you are, and where you thought you would be as a 26 year old woman?
I feel like I am more of a nag than I would like to be. I thought that at 26 I would be working full time as an Occupational Therapist. I recently got approved for the carers pension and I was so excited! I never thought I’d be so excited to be on a pension.

Do you feel that people who aquire Diabetes at a stage of life where they don’t need full time care are aware of what goes into caring for James?
I don’t think many people at all are aware of the care I provide.

How difficult is it for you to have time that is specifically set out for YOU?

Almost impossible. I don’t really have any time for myself at all anymore. Whenever I am doing anything part of my brain is thinking about where James is, what he is doing, if I can hear him – and if I can’t is it because he is just being quiet or because he is unconscious.

Do you feel naked without a glucometer in your handbag? Yes! My handbag has at least quadrupled in size lately. I never go anywhere without a glucometer, glucagon, solu-cortef, a can of drink and a few muesli bars.

Do you think that if a group of twenty people of various ages and backgrounds were asked about Diabetes and what they knew about it, that they would consider it ridiculous for a person with Type 1 Diabetes to receive a carers payment?

Yes. In my experience most people who have any knowledge of diabetes think that it’s a simple matter of changing your diet, having a tablet, or at worst injecting some insulin and you are ‘fixed’.

When you are so used to picking up the pieces of a severe hypoglycaemic attack where the reading is between 1 and 2mmol/L, does it frustrate you when you hear or read about other’s who talk about a hypo, and catagorizing it as ’severe’ and their blood sugar level reading was 5mmol/L, do you feel like you are talking about the same condition?
It is very frustrating! I think the thing that annoys me the most is that it makes me so jealous! I would love to be able to complain about a severe hypo of 4 or 5!

How do you feel when you receive almost no support from diabetes specialists? I don’t expect support from diabetes specialists, I feel that they don’t really know what it is like to live with diabetes as another member of the family.

Would you justify that the following statement is correct? James’s diabetes as a whole is almost like a fingerprint-in other words, no two cases are the same?

It is correct.

What do you hope that the future holds for you and James? I hope that we can both get back to work. It’s probably an unrealistic hope but it’s still my hope.

If you were not on alert continuously, do you believe that James could get through the day without you? Yes and no. I reckon he could make it through one day – if he didn’t have a hypo or an Addisonian crisis, and he remembered to have his tablets. However, the chances of this happening is pretty slim so no.

Do you go through periods where you feel like you are totally overwhelmed with so much see-sawing and sleeplessness? Yes. I get frustrated and annoyed at APECED. I get cranky when I am sleep deprived and so that doesn’t help matters.

How does your role of caring impact on your role of being James’s wife? Caring comes first. When we are talking and something doesn’t make sense, I think about his level.

Can you go out by yourself without making contact with James to ensure that he is ok? No! I have to message him or ring him to make sure that he hasn’t gone to have a sleep and his level has dropped. When I was working I used to have my mobile on me all the time so that I could check in.

Do you have the ability to vent your frustrations and fears about living under such vulnerable circumstances? I vent to you, Katey, and to Dan. I sometimes vent to James – but that is hard and it is usually only when I am incredibly frustrated. It is hard to talk to James about my frustration and fear without him feeling like it is all his fault and I make sure he knows that it’s not him I am frustrated with.

Do you believe that a General Practitioner would have any idea about what your life is like as a carer for James? Our current GP does. He is really good and knows how much care James needs. Normally though I wouldn’t believe that a GP would know what I do. Considering they mostly have never heard of APECED, the wouldn’t know how much work it takes.

Do you feel like you have Type 1 Diabetes? Yes. I actually think it would be much easier for me to handle if I had it, rather than being a carer for someone with it.

Because you can’t FEEL what a hypoglycaemic episode is like, do you feel discriminated against by the diabetic community because you don’t have diabetes, yet you treat them constantly and help James to pull through them? YES! I may not have physically felt a hypo but I know the symptoms, I have used glucagon, I know how to treat a hypo, how many carbs to give. I do the work to fix the hypo. I get hurt by comments made when James is hypo and then have to try and forget them because they aren’t ‘real’ comments, they are the comments of a sugar deprived brain.

Does anyone else with Diabetes have the right to make assumptions about how James is reacting to a hypo? No. No one with diabetes knows how anyone else with diabetes experiences the condition. They have more right than someone without diabetes, who has no real knowledge of it, but they still have no right. Did that make sence?

Do you have a instant kindredship with other carers of loved ones with Type 1 Diabetes? Not always… it depends on how diabetes affects their loved one. If they are the carer of a person who has ‘severe’ hypos of 4 – then I have little in common with them.

What about carers who call themselves Type 3 Diabetics? How do you feel about that? I don’t know anymore how I feel about type 3 diabetes. I feel like James’s diabetes is also my diabetes, so how could he have type 1, and I have type 3. It’s a clever name and does help to explain the extent that carers are affected by diabetes, but I think that it will add to the confusion over the types.

Do you feel that carers get enough support? No. I think that carers of people with severe physical disabilities get more support – with respite available to them, but people who care for people with diabetes don’t get enough support.

Do you feel that the visually disturbing, heartbreaking and challenging situations that present themselves in a person with Diabetes would be enough to traumatise their carer? For sure. It is very traumatic to see your loved one unconscious – and to have to try and calmly deal with it is impossible. Knowing that each time we get into bed, I could wake up with James unconscious next to me, makes me never want to go to sleep.

Do you think that the diabetic community take into consideration situations such as: sitting on top of your thrashing child to give them a sugary drink, administering glucagon injections to a person who is clearly conscious and disorientated, receiving physical injuries whilst trying to treat a hypo, or even being all alone with no one to help you whilst you wait second by second for James’s eyes to flicker open? I think they think about it, they are grateful for people who help them, but I don’t think they stop to think about the affect of their hypo on their loved ones. I don’t think that they CAN think about it – because I know if I was in their shoes I wouldn’t want to consider the impact of my condition on my loved ones. It is horrible that people need to go through hypos and experience the after effects of them, but carers go through a lot too. I am the one who gets hurt by comments made when hypo, I am the one who has to stick a huge needle into James’s leg, I need to put him into the recovery position, I have to watch to make sure he keeps breathing, I need to watch the clock to know when to ring an ambulance if the glucagon doesn’t work, I need to check James’s level every minute to see which direction it is going, I need to get the soft drink and straw and make sure James is able to drink it without choking on it. I am responsible for saving his life – and I am expected to do it calmly. While all this is happening James has no idea what is going on. His first idea that anything different has happened is when he wakes up and sees the glucagon box.

Because you don’t have diabetes, do you feel as if you don’t have the right to make comments or compare situations with those that do have diabetes? I feel that my comments aren’t taken seriously and that I don’t know what I’m talking about – but I still make comments and compare situations.

Does the carer’s allowance seem paltry to you, considering how much of your day is devoted to caring for James? YES! Carers live off a wage that is $200 less than the federal minimum wage yet we work 24/7. When I was working I was getting paid more than I do now – and I was only working part-time!

Do you have anyone who could step into your shoes if a situation arose? Not in Tasmania. If anything major happened I know that my family and James’s would try to step into them – but so much has changed with his care lately.

Do you fear for your own health and safety, knowing how much James depends on you to survive? Yes. I worry about getting sick and having to go to hospital myself.

When you are asked to provide your job description, and you reply “full time carer”, do you feel as if people are quietly judging you and James? Well in this case I am lucky to live in Tasmania. Before I had to stop work I worked as an assistant nurse in a nursing home – a position which is referred to as a ‘carer’ here in Tasmania. So people assume that’s what I still do.

Despite your complete devotion and adoration of James, on your 21st birthday, what dreams and hopes did you have for yourself at this stage of your life? When I was 21, I was still studying Early Childhood Education so I guess I thought I would be working as a teacher in a long day care centre, and probably have a kid of my own by now as well. I definitely never thought I’d give up work at 26 to become a full time carer to my husband.

When James needs hospitalization, how does it make you feel when hospital staff ask you what “you would do in this situation” or ask you to monitor BSLs?

Does the average Australian give enough credit to an everyday person who has given up their quality of life to ensure that their loved ones are cared for appropriately? No. And that is reflected by the state of carer payments.

Does the term “carer” equate to “unemployed” in the opinions of some?

Professor Robert Cummins (Deakin University) says of the results of his study into carer wellbeing: “We have been doing research in this area for more than six years … and I’m not aware of any group that has ever been found to have a wellbeing score as low as carers”. Professor Cummins also said that the average wellbeing score for Australians sat between 73 and 76, while the average score for carers was 58.5; for those who resided with their frail, disabled or mentally ill spouse, parent or child, the score was 58.4.” What do you think contributes to this? Most carers don’t choose to be carers. They have the job thrust upon them when something causes their loved one to require care. I think that the lack of choice, coupled with the restrictions imposed upon then as a result of caring, result in lower wellbeing. Carers are isolated, and live on a wage that is lower than the federal minimum wage, they work when they are sick, work overtime, and they feel guilty when they take time out for themselves.

When you describe yourself as a carer, have you had the experience where people assume that James is disabled or mentally retarded? As I mentioned earlier people in Tassie assume that I am a worker in a nursing home when I say I am a carer!

How much of your day is taken up by carer responsibilities? All of it. Even when I am doing other things I am thinking about James, what his level is, what he is doing, what he has eaten, why he is quiet, did he have his tablets?, when did I last put his eye drops in and therefore when is he due for more eye drops, did he bolus for the food he ate, is his infusion site working, when does that need changing again?

Do you think James is aware of how much stress, time and commitment is required to perform you daily duties? Yes he is. I try to make sure he knows… in a way that doesn’t make him feel bad about how much stress I feel.

Have you ever had someone flat out disagree with your knowledge of diabetes and how it affects James? Yes. Especially disagreeing with my knowledge. Being a carer in a nursing home was frustrating as the RNs had the final say and would question my ability to treat hypos in the elderly residents. I remember once being on nightshift and having to argue with the RN on duty to perform extra BSL checks overnight on a resident who had just started a new long acting insulin. She refused to believe that I knew anything about the insulin – even though she knew James has diabetes.

When you have concluded reading this interview, Liz has probably performed one of her many duties that so many take for granted. Her mind may be racing with thoughts of how the next hour will pan out. It’s NEVER ENDING. There are no holidays, no time off, no special privileges.. it’s a constant battle against the revolt in James’s body that causes these reactions to occur. At the age of 26, Lizzie is nothing short of a heroine that I have grown to admire and cherish.

I haven’t written on my blog for a long time now, I have been too busy with school and being the Man-Of-The-House.

It’s a big job, you know.

I like looking after my Mum though, sometimes, even if I just do something little like make the bed she gives me the happiest smile. Those smiles make me feel really important.

I guess I wanted to say that on the 15 May, my Mum is going to a meeting with a lady from Medtronic about getting me an insulin pump!! I feel like the last person on Earth who doesn’t have one sometimes. It doesn’t bother me that much, I actually quite like getting needles. 5 seconds and it’s all over and done with.  Sure, my belly looks like someone’s bottom if they sat on a echidna, but no one gets to see my tummy so it doesn’t matter.

My diabetes is invisible to everybody else.

I can walk through a shopping centre and no one knows I have it.

I remember when I was a baby and Mum would always have to drop everything and I’d be in the recovery position outside a cool shop. The sad part is that nobody ever stopped to help her, and the saddest part is that for once, I couldn’t even help her.

I am almost 7-and-a-half now. It feels like I am a lot older though. My uncle Dan thinks that I might be an old soul. Maybe I am, I don’t know. Sometimes, Diabetes makes me feel old.  Like when an old man has to stop to catch his breath if he has to walk a long distance, I have to stop and drink a sweet drink before I can keep on playing with my friends.

I have some important letters to write now. I have to write to Ian Macfarlane MP, and ask him to ask Prime Minister Rudd if he will give kids in Australia the access to insulin pumps. I’m going to send him a Jellybaby lapel badge also. Mr Macfarlane and I are old friends now. I hope he will absorb what I am trying to tell him in my letter.

I just realised that a big part of Diabetes is all about trying to make people listen.

I have managed to extinguish a lot of frustration and anger since my last post. I feel as though I have struggled my way up through a swamp of quicksand, and I can honestly say that I do feel emancipated from some of the burdens that were weighing me down.

My sidekick in all things Diabetes, Liz and I spoke at great length about the many frustrations and setbacks we have gone through in recent times. We both are full time carers of a loved one, and we got talking about how our situations are so similar. We decided to come up with a list of questions, and interview each other and compare answers. As soon as I have Liz’s responses typed up, I will post them. They are powerful and controversial questions, and she has provided equally powerful answers.

Stay tuned for my next post, and check out what Liz and I decided were questions that are rarely or never asked, and her responses to those that are appropiate to her situation. My responses to the same questions will be posted on Liz’s blog, www.jimneydandme.com.

In regards to burnout, I only need to look at my gorgeous son-it made me realise that Diabetes isn’t the sum of him, and it needn’t be the sum of us as a family.

 It’s easier to say than do, but I am going to be making a consious effort to do everything I can for Lance, in terms of ensuring that his Diabetes is cared for to the best of MY ability.Then we continue to move on, living with Diabetes, but still devouring the gift of everyday we have with each other. I am going to “bury” the remainder of the accumulated concerns I have gathered up along the way. They have been tripping me up for so long now, and it’s time to accept the way that Diabetes affects us and continue on our journey. Afterall, it is imperative that I am a healthy, well adjusted role model for Lance. I want to help him grow into a confident, self-assured man who is happy in his own skin, and who just happens to have Type 1 Diabetes.

I always wondered when it would happen.

The day that Diabetes whipped me into submission.

I have been struggling for a while now. It is evident everywhere I turn. I am so tired of living with Diabetes. I feel like I am trapped in a maze that has no way out, and when I do find the possibility to escape, there’s a menacing, laughing jester priming an insulin pen or waving a glucometer that is flashing HI at me.

It’s been 5 years and 5 months since Lance was diagnosed.

Over the last 2 months, he has had the most voracious appetite. I haven’t even finished cleaning the breakfast dishes, and he is suggesting what he can eat next. That’s the problem with doing insulin administration old-school style. That rush of rapid acting insulin devours any carbohydrates in sight.

Lance went through a period of about 10 days where 90% of his readings were over 20mmol/L. I averaged between 2 hours sleep a night, and had to face the following day with school, housework, insulin management, fingerpricks and FOOD.

I made an urgent appointment and stumbled into my doctor’s surgery. He called my name, and I fell into the designated chair. He greeted me with his usual charasmatic welcome, I didn’t need to utter a syllable for his expression to transform into one of grave concern.  

I spilt everything. I told him about the correction shots, being tied to the kitchen, Lance’s ever-present hunger, the obstinate readings.. He pushed a Kleenex box gently in my direction.

I didn’t have strength for tears.

The doctor asked me to bring Lance in. We sat down together and fiddled about with numbers, adding more units of this and decreasing less units of that. It just doesn’t work. Lance ends up having up to 8 injections a day if I don’t stick to the insulin doses that I have formulated for him.  However, I was willing to give anything a shot. (Can’t be bothered to amend the pun.)

I was so desperate I even gave Lance a course of worm tablets, even though Chino and Luna are wormed regularly. His contact with other children could just as easily have passed on some ravenous little suckers.

The worm tablet course didn’t do any harm, but it didn’t assist the situation a single bit.

Finally, it dawned on me that the reason for this catastrophic behaviour is entirely due to a massive growth spurt. Lance’s head now pops over the counter at the doctor’s sugery. His physical strength is absolutely stellar. He now sports long, lean limbs, and if you study his face for long enough, you can just visualise an impression of what his features are morphing into. His body is writhing with growth hormones, and as a result, he sleeps for 12 hours, and then eats for the other twelve.

His fingers are red raw from obtaining samples to measure blood glucose.

His tummy is swollen and bruised from his injections.

Insulin is vanishing from the fridge in astronomical amounts.

The only part of my day that provides me with some joy is watching my son learn, and knowing that he is learning to spell and do sums in his head because of my teaching skills. However, we are constantly interrupted by the growling of his stomach.

Even though this is Lance’s condition, and he undergoes the injections, fingerpricks and severe hypo attacks, a large proportion of it has always belonged to me. Sure, I don’t feel the physical horror of a hypo, or know the sensation of blood with the consistency of toffee flowing through veins during hyperglycaemic episodes. However, I set the alarms when it’s meal time, insulin injection time, I do observations during the night, I take over insulin injections hourly during sick days.  Without the reading of food labels, spending $400 on appropriate food a fortnight, measuring, carb counting, food preparation, cooking-all whilst avoiding salt, fat and gluten- he would be in quite the predicament.

I’m not having a pity party for myself here. Hell no. Type 1 Diabetes is a condition where you have to struggle forward and push aside as much grief as you can, so that you can breathe joy and energy into your child’s life. 

However.

I didn’t realise that without taking an hour or so out of each day just for ME would cause such an emotional disaster. Whilst battling to retain my son’s quality of life, I’ve unintentionally misplaced my own.

I managed to express these feelings to my doctor, who agreed that I definitely needed a break. He suggested a weekend away by myself. That would be the worst solution I could possibly think of. I am the only one who knows Lance’s diabetes. I can tell just by the sound of his footsteps and the tone of his voice if there is a violent storm brewing. I know that hysterical laughter and non-stop chatter means that he needed more insulin 5 minutes ago. I know that totally irrational behaviour, foot stomping and tears means that it’s time to get back into the kitchen and start slicing and dicing.

My doctor knows me, Lance and our situation very well. He gently nodded his head when I suggested that geographically isolating myself from Diabetes and Lance wouldn’t provide me with a fresh, new insight. He knows that I would be a sitting on the edge of a hotel bed wound up in a knot of terror, clutching the phone with one hand, and checking that my mobile phone is switched on and charged with the other.

I relented, and agreed without hesitation to have 12 weekly consultations with a psychologist, who specializes in grief counselling.

I am up to Session 2, and despite the fact that Psych Sara didn’t know what Type 1 Diabetes was, we really work incredibly well together. ( I was very impressed that upon arrival of Appointment 2, she had obviously researched the condition quite thoroughly, as she spoke about complications, day-to-day challenges and short and long term goals.)

She has enrolled me into a Stress Management Program; she is quite certain that she will be able to help untangle the mess I have got myself into. She will also be looking at techniques to help me become a slumber queen, and she is going to attempt to unlock my subconscience and allow myself to remember that  once, I did have a baby without Type 1 Diabetes, a happy and blissful existence with my then husband and a successful career. At this point, Post Traumatic Stress Disorder has rendered those days as null and void; my life as a mother beginning only as I struggled to keep my baby from drifting in and out of consciousness as we sped to the Children’s Hospital. For me, this is the beginning of my son’s life. If it wasn’t for photos, clothing and other varied forms of proof, I would blatantly deny that there was life before Diabetes. I desperately want to know about the year he spent as an apparently healthy, happy and blissfully serene baby.

So I have some work to do.

School is still progressing very well. I average three hours a day cooking food. I receive unconditional love from my son, and I get immense joy from our pets. I have accepted that I am doing the very best job that I can, and that I am not an computerised machine, expected to perform at the highest possible level of perfection. I accept that I need to sleep for good health. I have started on a B group vitamin to help get me through the winter. I have no doubt that my immune system is shot, and I need it to function well this coming winter, so that I can be the mother that I expect myself to be.

I don’t really have the perfectionist personality type, however, the overwhelming desire to protect my son from the insidious nature of this condition has transformed me into an obsessive, ranting, constantly worrying un-Kate like being who is only truly happy if Lance’s blood sugar levels are between 6mmol/L and 10mmol/L. 

 Spending over five years with an unwelcome and disruptive houseguest, day in, day out, has left me cynical and tired. Tired of the routine, tired of the appointmenrs, tired of explaining why this and why that, tired of having to alter my arrangements because of the unpredictable nature of Type 1 Diabetes. Yet there is absolutely NOTHING I can do about it.

 I am very single, very independent, yet very alone.

 Recently, I had a friend telling me about how she spent the night in Brisbane with her friends; they all went out and enjoyed the live music circuit. Something that I would have once done. Her four children were safe and sound in the hands of her brother’s girlfriend.

Type 1 Diabetes doesn’t have good or reliable enough manners for brothers’ girlfriends to take care of it.

I can recognise and admit what I let myself become was not just Lance’s mother, but also a Human Pancreas, more dysfunctional than the one that started this destructive rollercoaster in the first place.

I smile because of my son. I laugh at his quirky ways. I am grateful for my friends. I am fortunate for my parents’ support. I am blessed that I still have a civil relationship with Lance’s father.

There’s no other words for it. I’m just burnt out.

My dearest friend went on a well earnt holiday with her husband some time back now, and she sent me a gorgeous postcard which I treasure.

She wrote a quote on the bottom of it that I often reflect upon when during times of despair.

“History, despite its wrenching pain, cannot be unlived,

but if faced with courage, need not be lived again.”

(Maya Angelou)

This few words provide me with so much hope. They clear my head of the current battle that Type 1 Diabetes and I are embroiled in.

My friend Jim is the only other person that I know who really understands what Lance goes through with Diabetes. They have very similar issues regarding plummeting hypoglycaemia, and identify with each other amazingly, despite the age difference.

 Jim understands when Lance complains of how a hyper feels.

 Lance understands when Jim complains of a headache that won’t quit post hypo.

 Jim is the only person who truly identifies with Lance’s attempts at describing how having Diabetes feels.

Jim is a man who has survived a lot of heartbreaking blows in his young life. Despite having an extremely rare auto-immune disease, he is able to look at life and laugh and see beauty around him. He is happily married, he has just celebrated his 24th birthday, and has new and exciting ventures coming his way. He struggles to keep his diabetes and other life-threatening conditions under control, and between he and his wife, they manage to keep him out of trouble and more importantly, out of hospital.

In recent times, Jim has been noticing changes with his eyesight. He consulted an optometrist, who decked him out in some flash new glasses. He was told that he needed to have further examinations, as there was some abonormalities that were detected.  After several appointments with opthamologists and other specialists, it appears inevitable that eventually, Jim will lose his sight.

His wife administers three lots of eye drops several times a day to reduce the photo sensitivity that he experiences. They work through every problem that comes their way. Despite the fact that he endures pain and discomfort, and fear of his unknown future, he is still willing to try anything new, and to “see” as much as he can before his occasional bad days become more frequent.

He has many really interesting and thought-provoking ideas, and he has decided to share them with the world on his new blog, entitled http://sweetbittersurvival.wordpress.com/ He also candidly shares how his dreams have been altered without his permission.

It’s more than your average diabetes yarn. His optimism and confidence are truly inspiring, and for those looking for a read with a twist of sweetness and light, fighting spirit, hope, courage and determination, Sweetbitter Survival will not disappoint. His refusal to give in to his diagnoses is nothing short of awe-inspiring.

 Go visit his site and tell him how amazing he is!!!

In November, 2006, I had the extreme honour of travelling to Canberra with Lance, other children and adolescents with Type 1 Diabetes, their parents and our incredible JDRF Australia staff. We were attending a function called “Kids in the House“, an event that drew national media attention and stained the pristine interior of Parliament House with a chronic illness that is so often misunderstood. By the time we had left, hundreds of fingerpricks had been performed, dozens of real life stories were told, and thousands of tears were shed.

Lance was only 5 years old at the time, and had a blood sugar reading of 23.8mmol/L during the procedings. He was slumped on my lap, his eyes were barely open, and I had to do everything in my power to prevent him from yelling out in frustration during the speeches. Thankfully, he drifted off for long enough so that I could take some photos, and actually clap eyes on the previous Prime Minister, John Howard.

However, my mind was consumed with some of the most powerful and emotive words that I had heard expressed from a young person with Type 1 Diabetes. A then-17 year old teen, with gorgeous dark curls spoke candidly and honestly about an issue that is rarely discussed in association with Type 1 Diabetes.

Gareth Eldershaw opened the eyes wide shut of the parents, politicians and many VIP attendees.

He stood alone, his eyes clearly carrying burdens that you would not expect to see in a 17 year old boy. He spoke about his struggles with a ten year stint living with Type 1 Diabetes. That alone, was heartbreaking, especially when my own son doesn’t know a life without it. However, no one expected him to reveal his devastating and perilous journey with severe Clinical Depression.

Gary’s face was burnt into my mind for the best part of the next week, and the words that he had shared had made me ache with despair for him and his family, AND for the 140 000 Australians who live with the cruel and misunderstood condition that is Type 1 Diabetes.

In recent times, www.whydidtheinsulindie.com has been inundated with parents, carers of teenagers with Type 1 Diabetes and other chronic illnesses and people who are hiding behind their computer screen who are desperately searching for a phrase, or a sentence that they may identify with, or match the symptoms that they are experiencing. I knew that I wanted to emphasize the trauma of depression as well as coping with Diabetes (in particular), because it is so overwhelming, infuriating and debilitating for the sufferer and the caregiver. Two silent, unpredictable conditions that bring out the worst in each other.

I also knew exactly who to ask for help.

Gary was more than happy to relive his many years living with Type 1 Diabetes, and he had summoned up much bravery and delved into private and difficult territory by talking about the impact that depression has had upon him, his family, his friends, his diabetes and his future. Gary’s mother, Annette, has also contributed to this interview by recalling some of the darkest times in Gary’s battle with the bottomless pit that is depression.

The information that Gary and Annette have shared is recounting a part of Gary’s life that hopefully never resurfaces. It is their hope that by reliving these memories, other young people and loved ones can feel assured that they aren’t alone, and know that there is hope for better days ahead.

Kate vs Gary-waxing lyrical on all things pancreatic, systematic, traumatic, psychiatric…

When we last saw each other I recall that you were 17-ish. How old are you now? 19 years old.

What is your Starsign? November 24, whatever that is. ( Lance’s birthday is November 23, which makes you a Sagittarius!)

Are you still studying? Nearly finished a TAFE Diploma in Performance Music. The Course wasn’t quite what I expected so I haven’t gone back. I’m having some time to get my head together for a few months & doing intensive drumkit practise, preparing for band gigs (One Way Down .. see me on myspace) & doing lots of composition for band & personal satisfaction. I’m really getting into transcriptions of other’s songs.

What special talent do you want to share with the world? (In other words, career hopes?) Famous Heavy Metal Rock Drummer!!!

Do you still have your tonsils? Yes…

Ever tried sushi?? Not a fan…

What’s on your iPod at the mo? Every genre imaginable from renaissance choral music ( I went to Europe last December with my old school choir – sing lots of old music & some contemporary Australian compositions – great fun) also many tens of thousands of contemporary music/songs everything from meditation Enya stuff to Philip Glass to metal (lots of metal.)

I can still see you standing at the podium in the Great Hall at Parliament House. I was seated next to a VIP; she was a Secretary for a Member of Parliament. Whilst you spoke, she clutched hold of my arm, lost all control of her etiquette and sobbed openly, using my dress to mop up her tears! Not that I could see that well, (tears were spilling down my face..,) but there were 10 year old kids, blokey, rugged fathers, cold, pretentious politicians and the beautiful JDRF staff, all seated, transfixed by your every word, all with crumpled Kleenex embedded in their palms. Between the VIP and me, we were both openly weeping towards the end of your speech. For me, my tears weren’t a result of pity or empathy, but more because of your gentle, humble energy and your intense inner strength. Your courage to provide awareness and share painful memories to a roomful of people about depression - and that despite the fact that Lance was asleep, how fortunate he is to have a male role model to admire. Your gorgeous Mum sent me a copy of “the speech” which has again left my eyes hazy…

Kids in the House Speech- 1 November 2006..

My name is Gareth Eldershaw, I am 17 years old and I have had diabetes for over 10 years. Its been 3 years since the first Kids in the House and the message is still very simple. I need a cure for type 1 diabetes. All the kids in Australia who have type 1 want a cure and so do their parents and families and friends.

Diabetes hasn’t just wrecked my life, but everyone’s in my family as well. I have just had my 10 year anniversary of my diagnosis of type 1 diabetes. Maybe that’s not a long time in some people’s lives – but for me it means I just don’t remember back to a time without diabetes. Before I was diagnosed my family had planned a trip to Africa. In the end we still went, but my parents were terrified in case something went wrong. We tried to do cool things like other families but nothing is spontaneous with diabetes, everywhere you go you must take needles, insulin, glucometer, food.

The worst bit is the needles. Over and over day and night. They never stop. Now I am a teenager, diabetes is more of a pain than ever. It is with me all the time. I try to stay positive about a cure coming soon but I worry about long-term complications.

Like all teenagers I have struggled with the pressure of our time, but living with type 1 diabetes and all it involves makes it worse. I really went off the deep end last Christmas.. I developed severe depression and nearly 12 months later I’m still battling this condition, having medication and regular psycho-therapy. Did you know that almost one in four young Australians living with type 1 diabetes struggles with long-term depression? No one wants to talk about this but it’s yet another complication of diabetes.

I’m old enough to really understand and fear the other complications that might come later….

These include: retinopathy, kidney failure, amputation, heart disease, stroke…

Heart disease accounts for 50% of all deaths among people with diabetes

Diabetes is the leading cause of blindness in adults 20-74 years old

Diabetes is the leading cause of kidney failure, accounting for over 40% of cases each year.

Over 40% of people with type 1 diabetes develop severe kidney disease by the age of 50.

About 60-70% of people with diabetes have mild to severe forms of nervous system damage.

People with diabetes are 15 to 40 times more likely to require a lower-limb amputation compared to the general population.

Diabetes is the sixth highest cause of death due to disease in Australia.

Overall, the risk of death among people with diabetes is about 2 times that of people without diabetes. However, the increased risk is greater for younger people.

It is good to know that JDRF are working so hard to find ways to prevent and treat these complications and ultimately find a cure.

But I also have to deal with what happens now. I had a bad hypo awhile back and my brother thought I was dead. Now my parents are even more protective than ever, which is not cool!

What keeps me going is the news that researchers are making incredible advances towards a cure each year. All they need is a bit of funding to keep them going. I know I am standing in the middle of a political arena but this is an issue that goes way beyond party politics.

I don’t want your sympathy, just your support. Support for a cure.

This speech left such a lasting impression on me; I guess as a parent of a child who was a baby when diagnosed, the majority of the public look at him and see a picture of health standing befote them, and they struggle to see where the “health” problem lies considering his robust appearance.

However, I look at my son, and I see the blood samples that are collected from his arm every three months, the visits to the optometrist that leave me physically ill, waiting for the doctor to speak after thoroughly looking into Lance’s eyes in case he finds “a bleed.” I hold his hand, and feel his calloused, scarred little fingertips. I am constantly thankful for the lifesaving properties of a glucagon injection after a severe hypo. When his blood sugar is back to normal, we usually go through 24 hours of fierce headaches, light sensitivity and vomiting that almost always requires a drip, as he becomes terribly dehydrated. The morning I found him cold and blue in his bed at just under 3 years of age; he had slept through a severe hypo. Out trip to Canberra made me feel like we belong to a “Society” that knows all too well about complications, the stigma attached to having to prick your finger and how a drop of blood instills fear into ignorant folk, thinking that a blood borne disease could be contracted by sitting near a child who has Type 1 Diabetes. The stigma of depression is real and blatantly considered to be a “take a pill and it will go away” or ” You just need to remember that there are so many people worse off than you” brush off. Who wouldn’t be depressed at having to go through all of these procedures and knowing that you could be blind in your 20’s, have a heart attack in your 30’s..it’s a condition that constantly eats away at you. It’s difficult to hope for the best, because the best is so far away. The worst is already happening for Lance, and for you, regarding complications. It is fantastic to see surveys about being a carer circulating, and organisations such as Beyond Blue are recognising the difficulties associated with the upkeep of a chronic disease, and fighting off long term depression-finally a step in the right direction.

When were you first diagnosed with Type 1 Diabetes? May 15 1996

Are you on insulin injections or do you have an insulin pump? 3^rd pump so far over 5-6 years . I had injections for first 6 years and HATED every one.

Is your endocrinologist a happy little camper at your 3 monthly visits? I have just started seeing a new guy (endo for last 12 years just retired). I have been very lucky compared to some peoples’ stories. My old endo was always encouraging, he never said I was “bad” –it was always “the best we can do at the moment” even when things were terrible or my HbA1C was 11.3 (just before I started on the pump). The new Endo was good at first visit and is also encouraging already.

How long have you been a JDRF Youth Ambassador? Since around 2001.

I know your fam are amazing fundraisers…do you get involved in any projects as well, such as Walk For A Cure? Every single one. Dad says it’s a sacred day for the family & everything else gets cancelled so we can go. Im supported by IBM (they have supported Youth Ambassadors for many years now) & Boral. I try to help as an ‘adult’ (!) now by handing out prizes, selling raffle tickets and the like. I’m usually involved in some media promotion too– radio or TV/film at the walk.

(Annette) When he was little, Gareth was always amazed that he couldn’t tell who had type 1 diabetes in the huge crowds. He thought it was funny to see so many glucometers at lunchtime though! We encouraged the event greatly as we felt Gareth needed to see that there were so many other quite “normal looking” other people that just happened to have type 1 Diabetes.

I speak at every JDRF Ball (been 4 so far) to get more support from well heeled corporate blokes - I love ‘em all, even though they are so much older than I; they treat me like an equal-crazy!

At what age or time period did you find Type 1 Diabetes become a social hinderance? To tell the truth, I can’t really remember. Obviously having it at a quite young age it is hard to remember the exact details of the situation ,but it pretty much became obvious to me as I started to get older and learn more about the disease, the more things I had to actively think about and try to take care of as best as I could. Sure, I had Mum at home and at a lot of the places I went, as you do as a littley, but she wasn’t always around to give a hand at school during the middle of the day for example. Problems would often come up and every day was a new challenge for me.

Were you pretty open about telling people that you had Type 1 Diabetes? Yes and No. I can talk to some of my close friends openly about it, but then again there are still some friends I feel awkward about talking to. I’m not exactly sure why, it could be that it’s something i don’t feel the need to talk about or whatever, but i really dont know. People around me should know, so they can have a vague understanding of what sort of situation I’m in, but it’s also up to me to be able to take care of myself and not have to have them worry about it/have to think about it everytime I’m with them. It’s not really their ‘job’ because in theory i should be all good, but sometimes things don’t turn out so great. I’m very grateful for my friends’ concerns and that they do understand. Not everything is so simple though….

When you had episodes or bouts of depression, would they flare up and then die back or were they there, big and black all the time? Full blown all the time, I couldn’t get away from it.

Did you have any obvious symptoms that indicated that you were a candidate for depression? Well, I guess I wasn’t the one who noticed it because it came on as a gradual thing, sort of like growing, it’s always the grandparents or someone like that who notices and not yourself . But i guess my family were a little concerned with it to start with, i don’t remember a lot of it because it was just such a dark time for me, but my friends noticed too. Some tried to talk to me about it, but being your typical arrogant teenager at the time, I told them I could deal with it or nothing was wrong, which is pretty much the total opposite of what was happening.

(Annette I could write a book about this now! He’s right - parents were about the last to admit (see) the symptoms – it’s pitiful now in retrospect – embarrassing to say you were the parent – we need so much more educating! I feel/felt such a failure.

When you were diagnosed with depression, were you initially shocked/angry/upset/? You could say I was upset, but then again i was upset the whole time I was going through it. Everything I looked at, I saw the negative side to it, even if it was something like the blue sky, i just couldn’t handle anything or even understand what was going on properly.

So, whilst dealing with this, was it tough looking after Type 1 Diabetes continually demanding attention from you all day long? It was a challenge in the fact I totally stopped caring, even if I got sick, felt terrible, made it hard for people around me, whatever. I was completely blind to everyone around me trying to help me, but also to the fact that I had so much support that went unnoticed by me because of such single mindedness, and not caring about anyone. It made more work for everyone around me too, having to do what I should have been doing myself but wasn’t, even the simplest of tasks.

Your family are an amazing support network to you. Did anyone click that there may be something wrong, or did you have to tell them how you were feeling? The former, i had no idea in the world what was going on til it was too late. I was taken to psychologists and psychiatrists and God knows who else..one after the other, to try and sort the problems out. Same with the medication, I started to hate it too, I didn’t think I needed it so I’d not take it for days on end and that would cause more havoc among the family.

Did you have a supportive medical network? I still do to this day.

Is there one particularly dark moment (more so than others) that you remember whilst suffering depression? There is no solid memory i can recall, but there’s enough fragments to last a lifetime…

You’ve tried both medication and counselling. Was it really difficult to have to wait up to 6 weeks for a tinge of improvement? It was hell, yes, I tried both the medication and the therapy/counselling but I didn’t feel it really helped (even though it obviously has..) The medication was ridiculously slow to actually have any noticeable effect on me so I didn’t think much of that. The counsellors trying to help- I thought they were just like little machines that had a response to every answer I could think of, or any question I had. None of them except one, had a good run with me I don’t think. They didn’t seem to help anyway.

When did things first start improving? About when I finished Grade 12. I got away from everyone and everything, I wasn’t really cut out for being in school because I hated the place to death, but I stayed for the sake of it. When the time did come around, I felt a huge weight lifted from my shoulders, but also the fact that I could almost ’start over’ . A whole new world opened up for me so i guess im lucky in that sense.

You sound like you are strong in spirit at this moment. Is it true what they say about “you’ve just got to give it time…?” As much as I know anyone who is in the same position as I was doesn’t want to hear this and will probably just ignore me for saying it, time is life. There’s no quick and easy way to just ‘fix’ it, its not really like a car and if something’s broken you just mess with it for a while and it will be fixed, its something human and living, you can’t get around it.

Can you suggest what somebody experiencing any of what you have been through should do first? Talk to those around you, and tell somebody how you are feeling. It may help rather than an outsider’s assistance..

What about if you notice symptoms in a school friend?? It’s hard to notice at school because there is so much going on…,someone could be in a terrible state, but everyone may think they are stressed out from exams…or a detention later that day….or whatever the reason may be. If you CAN, talk to the person you are concerned about, if you can’t, find someone who can..it may be just enough to stop them falling apart…

If I could give you two tickets to any band/singer in the world, who would you go and see, and who would you take with you?? That’s a terribly hard question for me to answer! There are so many bands out there right now that I’d love to see..a LOT come to mind but if I could pick ANY band in the world and be able to give the tickets away, I’d give them to a few close friends of mine and let them enjoy the time, with the band of their choice. I find supporting friends/family is one of the greatest things a person can do for them.

If you are feeling any emotions or having moods that sound similar to what Gary went through, OR if you are concerned that your child may be depressed, there is help close by until you get a medical opinion.