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On The Inside Looking Out

dealing with type 1 diabetes

Duality, of these

Glass walls,

Created by my

Body, and

Mind.

Growing,

Ever taller,

Ever thicker.

They hold me 

Safe,

in this

Space.

They hold me

Back,

in this

Prison.

I look out

Across a movie, of

Life.

Like my Cat

Watching me,

Through the Kitchen

Window.

Knowing, I could

Reach out,

Jump back in,

Join the others,

While they

Carry on,

Comfortably

In their world

Of absent mindedness.

I see them, but

Do they really

See me?

As I draw

The blinds.

This year, I turned 52 years old and in January 2020, I will reach 40 years of living with type 1 diabetes. That is miraculous. In some countries, children can not even access life-saving insulin. In some countries people can not afford the insulin that is available to them. I am one of the lucky ones. I grew up being told that, and, that I could do anything I wanted. Diabetes would never stop me.

Except that this was not true. Diabetes did stop me.

It stopped me from feeling whole as a teenager. It stopped me from feeling part of the gang, at a time in my life where being part of the gang was everything. It stopped me, as a very smart girl, from making smart choices about my body and my heart. The doctors did tell me it would stop me from having babies. At least healthy, alive ones. That was one thing they told me it would stop me from doing. Oh and the “Forbidden Foods list”. They totally gave me that.

But worst of all, it stopped me from loving myself.

As I grew up, I started to challenge all of this stopping. I started making brave choices. I left the man who was beating my body and mind. I finished my social work degree and I started working in child protection. I had my first baby and then left his father – another man who was unable to love me and give me what I needed. I met my beautiful husband, who I married in 1998, and had another baby in 1999. I went through post-traumatic stress due to my work, had a major breakdown, dealt with post-natal depression twice, secondary infertility when we decided to try for a 3rd baby, a miscarriage at 40 and finally, my third baby at 41 years old.

In between all of that, I left my job, started a ground-breaking online diabetes counselling service in 2001, studied diabetes education, won awards, spoke internationally about diabetes and mental health, started a sustainable living blog, amassed a huge following of people, studied design, started and completed my PhD. And in between all of that, I continued to manage my type 1 diabetes and its growing complications and impacts on my body. On its own, type 1 diabetes is a full time job. When I think about everything I have done over the past 40 years, it is easy for me to become exhausted. It is also easy to overlook the real impact that my health has had on my life.

I sit here now, at 52, that 40 year diabetes anniversary looming, with a very different daily experience of my life. My health conditions and complications now make a very long list, with the most prominent being type 1 diabetes, gastroparesis (gut paralysis), ADHD and Anxiety. There’s a pile of others, but I won’t bore you with that list. This list has however, begun to greatly impact my life. It has finally taken hold of me and shaken me up, tossed me around, made me drown some days.

Yet, I am used to constantly pushing myself. I am used to getting up each day and broadcasting my life to the world. I am used to being all go, go, go. And having been a blogger since 2001, my life has pretty much revolved around sharing things online. I am used to competing and pushing and working on new ideas, all the time. But, in the past 12 months, my ever-growing list of health conditions has started to become very wearing, to say the least. My GP told me that the support staff refused to complete my Diabetes Management Plan because it was “too complex”, that they threw their hands up and she had to do it (geez, thanks.). Many of my specialists say that I am so complex they do not know what to do with new problems when they arise (geez, thanks.). My husband consequently and lovingly, calls me, ‘The Project’, which would be funny, except that it isn’t.

On the outside, you would not know any of this. Unless you looked really, really hard. After a very serious event with my health last November, I have been forced into a position of acceptance. I had another of these events last week. The result is that I have had to accept that I am disabled. That I will never work in a workplace again and that any kind of work where too much pressure is placed upon me, is difficult. My health is hard every day and a flare can happen suddenly, rendering me bedridden for a day or so. But yet, my brain is so busy, so needy. I thrive on thinking and planning, on plotting and ideas. I thrive on doing things. A brain that is layered by ADHD and anxiety, has to move. It can not lie dormant. Yet, this very brain is also deeply affected by my physical health and when a flare like last week happens, the fear only rises. It pushes me back inside my glass walls.

My type 1 diabetes has become increasingly brittle and low blood glucose (or hypos) can hit me at any moment. My gut conditions and the side-effects of medications to manage it, mean I can be housebound, near my toilet, on many mornings. I can not eat most foods. At the moment, due to last week’s stomach flare, with sudden vomiting and diarrhea and 5 hours of low blood glucose, unresponsive to treatment – I am back on thin bread/toast, a little low fat cheese and tomato soup. Watching a food-obsessed world behind my glass walls is torture sometimes. Planning, shopping and cooking meals for a family every day, is no picnic either. Along with this, watching a competition, achievement, busy obsessed world, as I swing between a habitual desire to achieve, with a very real need to rest and stay quietly in my home, is agonising.

So, I am working on this acceptance, on the changing ways that I fill my days and the one thing that keeps me sane, is my writing. I can write in bed. I can write on a bad day. I can write to lift my mood. I can write to disappear from the world. I can write to be in the world. I can create worlds. I can write. Writing children’s books is something I have come to later in life. It is something that is incredibly difficult and incredibly wonderful. It challenges my busy, needy brain, without putting pressure on my body. I like this new me. I may oscillate between love and hate for the glass walls that are all around me, but I can grow flowers and trees inside here, and I can make stories, because the sun rises and sets just the same, and in here, the rays are even brighter.

Helen

4 Comments

  1. Helen Craig on August 15, 2019 at 11:47 am

    Dear Helen. This post resonates with me on such a personal level. So much of what you have experienced has a struck a corresponding experience in my life but I have been lucky enough to have a supportive partner to help me along the way. As a type 2 diabetic with gastrointestinal issues I know exactly where you are coming from. Luckily for me, mine are not as severe as yours but I feel for you. I know what you mean about how writing for children can provide that mental escape. It is a wonderful place to bury oneself from the angst in most of daily life. I’m so glad to hear that you now have a knight in shining armour to be by your side through the uncertain future. It sounds to me that you have the tenacity to hang firmly onto the positives in your life and you may struggle at times but will eventually sail through. Kind thoughts and wishes are on their way to you. Helen Craig

    • Helen Edwards on August 15, 2019 at 1:18 pm

      Hi Helen – thank you so much for taking the time to read and share your thoughts. I also have a wonderful husband who is my rock, and both my parents as well as 3 beautiful sons. I am very lucky. I love what you have written and it has made me smile a lot. Have a lovely day x

  2. Mary Anne on August 19, 2019 at 7:39 pm

    Thanks for writing this Helen. I’m only a few months behind you. 39+ years.

    • Helen Edwards on August 22, 2019 at 5:46 am

      you are very welcome – thank you for reading. We have had a lot of living with type 1 diabetes!

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