I wrote this for a friend who was only newly diagnosed with type 1 diabetes and she was struggling.
When she explained to me how she was feeling it brought me right back to when I was first diagnosed. I wanted her to see that she wasn’t alone and that I did understand.
Rising From The Ashes, with #Type1 #Diabetes
There have been many times in life when iv had to rise from the ashes, and each time iv done it, it’s always been with a sense of where iv been and where I’m going. Each time I rose in the past, iv had a network of friends and family behind me that I was somewhat sure of.
Upon my Type1 diagnosis, in the ashes is where I honestly ended up, this was one fall I’d never experienced before, and I knew beyond a shadow of a doubt that rising this time, would be one of the most difficult tasks I’d ever taken on.
Yes, learning the regime and lifestyle I now had follow was going to be challenging, but that was just maths. Counting carbs, working with ratios I’d been given, following sick day rules, being constantly watchful all day and all night, clock watching, always travelling with food, insulin pens, BG meter, test strips, a hypo kit and other hypo fix before things get too bad. Always thinking of food and when your next meal or snack is. Planing every detail of my day in order to remain stable. Its not in any way easy, but it’s do-able.
All this information initially comes from our diabetes team, in what ever hospital we are attending.
What they don’t tell you about:
From the first day of using insulin, newly diagnosed, and now at home ‘flying solo” the absolute crippling fear that sits firmly in the very front of your mind every single moment of every single day. “The fear of having a hypo” we know what can happen, we know what to be aware of, and yes we are told what to do.
Then bedtime comes………
Have you ever been terrified to close your eyes, in case you don’t Wake ?
Well that’s our first hurdle, it’s about then, we, “in our logical thinking” feed our diabetes. We automatically think first and foremost as a matter of priority about waking up, that’s all, just wanting to open our eyes to start another day.
At first we think going to bed high, is going to achieve this. It’s only later we learn that this practice is just as dangerous as being too low.
It’s that balance we need, I call it “walking the wire”
This feeling comes with the judgemental glances, the comments, the disapproving noises and gasps. The O My God are you really going to test in public? The, seriously are you going to inject in a restaurant? The noises of intolerance people make as you assess the food in front of you in order to work out your dose.
Yes, they would be happier if you took yourself off to the public toilet, full of germs and bacteria to inject like an addict, just so they can be comfortable.
The isolation happens, when we decide to hibernate and shield ourselves from this kind of behaviour, or worse again do what they require we do, and do it somewhere else.
The insult added to this, is they are usually the very same people who find us, in a dark and lonley place, crying constantly. That’s when they swoop in and say “you know depression and diabetes is quite common” they might even offer to drive you to the GP to talk about depression, but they never helped when pushing you into that corner.
This is something, that only someone diagnosed, or a carer of someone diagnosed, with type 1 diabetes will understand.
The blissfull ignorance & hurt:
This is when you make a decision one day, to help your friends etc to understand. Your all prepared for the conversation, when the opportunity arises. Your going to explain in simplistic terms, your going to educate gently. If we are totally honest we are not doing this to help them, we are doing it to help ourselves to fit back in to a place we once belonged.
You seize your your opportunity, and quickly realise there’s a lack of interest, you feel sad and defeated. Lost and lonely.
Iv spoken to many people who have gone though this, and yes their friendships have changed.
They feel more comfortable among those who speak the same language and live the same type of lifestyle. This way there is no need for explaining, and no need for justifying why we do the things we do.
This is why our online community is of so much importance, & Facebook is invaluable, we talk and exchange ideas and experiences, we may not have met face to face, but we are friends, because these people understand, learn, tell us about everything, and we don’t feel isolated or judged. These people put out their hand and help us up out of the darkness and isolation, until we can someday stand alone and help another going through the same thing.
Why am I posting this now ? Because if this is how you are feeling then I’m hoping you see that you too can be that Phoenix rising out of the ashes……..
Im Davina Lyon, I’m not a professional, just a person With Type 1 Diabetes sharing experience.
For those who think diabetes is caused by an unhealthy lifestyle let me clarify a couple of things.
I have type 1 diabetes. It’s an autoimmune disease. Nothing I did, or didn’t do caused it and nothing I do will cure it. There’s is currently no cure for Type 1 diabetes.
Type 1 Diabetes happens because our own antibodies attack and destroy an organ in the body. it’s an autoimmune response where antibodies that normally fight disease mistake a part of our body
(the pancreas in this case) as foreign and attack to destroy it.
When those antibodies attack the insulin producing islets in the pancreas we stop producing insulin so we need to inject or pump it.
Without insulin a person with type 1 diabetes would die. At present it is not known what causes this to happen, and there is no cure.
A person with Type 1 diabetes MUST inject or pump insulin to stay alive.
There are many factors that contribute to a diagnosis of Type 2 diabetes so pre judgment of a lifestyle choice is unfair at very least.
A person with Type 2 diabetes, while still producing their own insulin for various reasons their body cannot use it correctly or efficiently.
These people are generally treated with oral medications and sometimes with insulin injections.
Please support me to help raise funds for Diabetes Ireland.
Diabetes Ireland have been a huge support to me and our Type 1 Community.
Diabetes Ireland Fundraising link :