Why did the insulin die in my pancreas?

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.