Introductions and Normality

Just to be clear:  TD stands for Teenage Daughter, NOT Teenager Diabetic.  I know this blog is about the joys and challenges of parenting a person with T1 diabetes, but it occurred to me that this gives such a small picture of our lives.  TD is so much more than a diabetic teenager.  Diabetes does not define her.  It limits her.  It hurts her.  But it is only a small part of who she is. And so, with her permission, I thought I would introduce you a little better.

Some things you will already know from previous posts - like how strong headed and certain of the way she wants things (OK - stubborn)  she can be at times.  You will also know she inspires others with her bravery, tenacity and resilience.

She is a quirky, creative being.  She finds happiness in drawing, in playing music ( she plays the piano and the double bass - nothing small about TD's ambitions or instruments!) and in writing.  She is passionate - about human rights, about gender issues, about freedoms.  She is funny, with an off beat sense of humour, and an excellent sense of comic timing.  She reads.  She loves cat images on  the internet.  She plays Settlers of Catan with the family using cunning strategy.  She likes history, and is good at maths. Most of all, she is a good friend - loyal and kind.

I started thinking about all this after reading a thread on the Tudiabetes website.  The thread was called "Can T1s have a truly normal life"  The two sides of the argument seemed to be :  Yes, diabetics are just the same as other people, and No, diabetes affects every part of daily living and you are doing a disservice to children telling them they are normal, as they aren't the same as everyone else.

I have strong feelings about this subject. There is no such thing as "normal."  Everyone has restrictions in their life.  Maybe someone is too tall to be a ballerina, or has a visual impairment so cannot be a pilot.  Some people are restricted by economics, some by low self esteem.  "Normal" is a veneer people put on top of character in order to blend in and feel acceptable.  It is, in my opinion, a mythical, unattainable and reductive goal.

 

Yes, TD now has restrictions.  She cannot eat carbs without injecting insulin, she cannot be a pilot, she needs to test her sugars many times a day,  and she probably will be too tall to be a professional ballerina.  Everyone adapts:  she will too. 

She can't make up her mind.  Maybe she will be an architect.  Or study political science.  Or write a book.  She is fourteen - lots of time for her to decide how she will use her talents in this world.

Until then, she will, like a lot of teenagers, keep tabs on all the cat memes on the internet.  Like all other teenagers, she will challenge her parents, and debate almost every decision.

And like most other teenagers, her room is a mess.

Acutonics and herbal tonics

About six months after TD's diagnosis, my husband and I made an appointment with a doc who had first trained in Western medicine, studied further in Chinese medicine, and now chooses to practice the latter.  We wanted to find support for TD, and I, in particular, wanted to explore any helpful avenues.  He spoke to us for over an hour, explaining the Eastern model of health to us; how the body reacts to its environment, how we can influence which parts of genes we can activate, the role of both conscious and unconscious stress on the adrenal and hormonal systems.

He doesn't use the word "disease" for diabetes - rather he sees it as an imbalance.  He taught us about the Autonomic Nervous System that controls the flight/fight responses, and how relaxation is needed for even every day functions such as digestion, and the Peripheral Nervous System which deals with such things as heartbeat, pancreas functioning, learnt behaviours...

(I really hope I got this right.  PLEASE please comment, suggest or correct me if I have misremembered or misunderstood.)

TD has - unfortunately for a diabetic - a strong dislike of needles. So, although Dr P thought acupuncture would be a supportive form of treatment for her, he suggested acutonics.

Acutonics uses tuning forks with different frequencies to create harmony (or disharmony.) These forks are banged on a piece of metal and then placed on the acupuncture points on the body.  Dr P also put TD on some herbal supplements, as Chinese medicine believes that taste addresses different needs in the body (think of wanting curries and soup in winter, salads in summer etc...)

We told TD's endocrinologist all about this.  She is the person we trust with TD's diabetes management.  She is supportive of complementary medicine as long as it does not interfere with treatment of diabetes.  Both doctors agreed that it could do no harm.

So we made frequent, then less frequent trips to town.TD would chat to Dr P for a while, and then go into the cool, quiet, tranquil treatment room for acutonics.  The combination of the soothing environment, Dr P's gentle manner and listening ear, made the whole process one of deep relaxation and a feeling of wholesomeness.

We tried this, and the herbs, for a few months.  As TD got more used to the treatment, its calming effects seemed to lessen.  Dr P wanted to move on to needles and full acupuncture, and tried a few.  But TD was having none of that, so we stopped going.

This was a costly business, but I do not regret it at all.  At the time, we needed to be able to relax a bit, and this was part of the journey.  Finding a relaxing space to chill out for an hour twice a week, weekly or fortnightly, was good for TD at that time.

Have you tried anything similar?  Please comment if you would like to - I would love to hear a ping from the universe!

The Power of Friends

Something magical happened when TD was first diagnosed.  Her school friends enfolded her and encircled her in protection and love.  It has been a privilege to watch this process.  Sometimes the encircling has been quite literal - if she needed privacy for testing or injecting, or if she needed support whilst having a low, they would form a protective group around her.  Sometimes the barrier was an emotional one of kindness between her and the harsh realities of diabetes.  Each individual brought something unique and powerful to the friendship - quirkiness (highly valued here!), love, humour, hugs, straight-talking, listening hearts, and a sense of normality.  Friendship can be powerful.

They are a funny group too.  Once, when TD was being questioned yet again why she carries a cooler bag around all the time (it's for her insulin), these 11 year old girls answered on TD's behalf that it was her make up bag, because she needed to touch up her look during the day.  This in a rather strict school environment where dress is uniform and make-up, obviously, forbidden.  Their humour is catching.  Now when we play "Who has the saddest story to earn the last brownie"  (like in the movie Notting Hill) TD usually wins with, "I am diabetic and single."  Well, yes, that is hard to beat, so with an insulin injection of 2 units, she gets the last brownie.

There is nothing funny about T1 diabetes.  Humour is a coping strategy which works well to sometimes lighten the prospect of a lifelong disease.  It can be a lonely business being diabetic.  I am so glad TD has so many good people in her life.

The High Life and low life

I wish I had a better understanding of the Highs and lows, the whys and wherefores of a teenager withT1 diabetes. Hypoglycemia (too little glucose) and hyperglycemia (too much glucose) are everyday buddies of my Teenage Daughter (TD for short). Some patterns I can see, but others seem so random! One test she is floating in the glucose teens and the next she has sunk to the scary threes.  I get frustrated with my own lack of ability to predict what's next, my own inadequacy in helping and bewilderment at the power of the body.  I have always been a believer in the mind/body synergy - the importance of linking heart with health (in a practical way) and now, seeing glucose swing with fear, sadness, happiness, anger, there is concrete confirmation of this.The adrenal system is activated with extreme emotion and this obviously has physical effects. Now I can just see it in numbers on a monitor.  In a detached way, it is all very interesting, but in an honest moment here - it makes me raw with fear and sadness.  Unlike TD, my pancreas deals with all these emotions and my body copes to a degree.

I am lucky - TD is usually quite open emotionally.  She will say, " I am sad today, and I don't know why." or "I am feeling strange right now."  Like most every other mother in the world, I want to take it away and make it all better.  And I know I can't.  So I enfold her in my arms, and hold her and let her know I am there.  It seems horribly inadequate, but it is the best I can do.

Start at the beginning

Most days I say a silent thank you to Dr M - a man I have never met, and only spoken to once on the phone.  He phoned me at about 1am on Saturday the 20th December 2014.  As the doctor in charge of the pathology tests at the lab a GP had sent Teenage Daughter (TD hence forward!) blood tests at 4pm, he saw them and knew she was in critical danger. TD had been unwell for a while - tired all the time, losing weight and lacking her spark, we had limped to the end of the academic year, and thought a holiday would do the trick.  We had been to the GP a few weeks before with the same symptoms, and he had prescribed an antibiotic.  But she wasn't getting any better, and on a Friday morning at the local grocery shop, she ran out of energy.  She used what little she had left to protest against me taking her back to the doctor (Christmas time was very important to my eleven year old.)  But I picked her up and dragged her there.  He sat her down and did the usual checks.  He then sent her off to provide a urine sample, leaned forward and confidently diagnosed anorexia nervosa.  No.  I knew that was way off and told him so.  I also thought it was a somewhat rash diagnosis.  When TD got back the glucose test strip went violently green, indicating high levels of sugar.  So the GP took some blood and sent us home.  TD and I crawled into my bed (Dad and brother were away for two weeks) and knowing there was something terribly wrong, we drifted in and out of restless dozing.

Until Dr M phoned to say TD's results were critical and could not wait until morning.  He had phoned the local hospital, spoken to the emergency staff, told me a name of a doctor who was waiting for us right then.  He had thought of everything - I bundled TD into the car and went to the waiting emergency room.  He saved TD's life.  I will be eternally grateful.

(Not so much to the GP who sent us home.)

How did you discover your child had diabetes?  Are there people you think of daily in gratitude?  Were you as terrified as me?