Monday, 30 December 2013

What's it like?

What's it like?
What is it like to live with Type one diabetes?

To live with a disease that has no cure, is potentially life-threatening, can cause complications and leaves you dependant on insulin to live? It's tough, to say the least. I have been living with type one for nearly five years now- it will be five years on June 21st 2014. In my four years so far with type one diabetes I have experienced high and low blood sugars more times than I can count, been in hospital three times in diabetic ketoacidosis, had sleepless nights, felt emotions on a massive scale - anger, frustration, fear, but then there is happiness and pride...don't forget that, and more. On top of all of that, I have endured thousands of finger pricks and injections and hundreds of pump site changes.

My very first finger prick and injection on 21st June 2009 would be the first of many. Four and a half years on I look down at my fingers and I can see tiny little scabs covering the tips, when I look down at my stomach and my legs, I see red spots all over, I feel lumps on my thighs, from injecting myself five+ times every single day. They may be small, but they are loud. The marks on my skin from endless needles tell a very big story, they speak the truth of a life with type one diabetes.

I have spent roughly one thousand, six hundred and two days with type one diabetes. Days I should not have spent injecting, testing my blood sugar, being in hospital, going to clinic, feeling high and low blood sugars. These are days I should have been spending as a normal teenager; like everyone else. But I didn't, I have type one diabetes. Am I going to sit and cry about it and feel sorry for myself? No. Do I expect anyone else to feel sorry for me? No. Life could be so much worse,  I accept what I have to live with, I cannot change that. Nothing except a cure can change that.

But just because I'm not willing to moap around about diabetes doesn't mean it isn't tough. Because it is. It is frustrating and painful and exhausting.

I have had over 6,000 finger pricks.
I have had over 4,000 injections.
And over 200 pump site changes.

(I am not very good at maths, these are a rough estimation. Don't judge)

Needles.
Type one diabetes is needles. Finger pricks, injections, I.V's in hospital if in DKA, yearly blood tests...needles.
Luckily, I am not afraid of needles. They do not in still a sense of fear in me, unless very large I suppose. Anyway I do not fear them like some other people do- in fact most diabetics do not fear needles like most other people. For they are what we use to give ourselves insulin, the very thing that keeps us alive. Does that mean the needles don't hurt? No. We are not immune to pain. I feel pain just the same as the person next to me, if I hit a nerve whilst injecting it does hurt and I will wince, after all, I am still stabbing my stomach with a sharp object. But I'm used to it. So I will get on with it, because it won't be long till my next finger prick or injection, it's normally roughly about 2 hours.

It takes a lot of nerve, courage and bravery to live a life with type one diabetes. Sometimes those on the outside acknowledge this, sometimes they will not, and the finger pricking and injecting is a fact for those people. Usually the ones who acknowledge it are the parents, family members and friends who watch what a diabetic goes through every single day, those who do not are probably not educated very well on the emotional side of type one- the finger pricking and injecting is just a statement to them, a fact.

But for the person with type one diabetes, what we go through every day is so much more than just a factual part of our lives.

Like the number on our blood sugar meters.
My little cousin likes to "help" me test my blood sugar. She reads out the number on the screen for me. To her, the numbers mean nothing. She has no idea what it means, while at a restaurant earlier with my mum, auntie and cousins she read out "17.9" then she went and got her crayons and started colouring. Then again, I love that she is innocent to it all.

Injections.
The waitress who saw me inject today saw me inject, but that's it. She saw it. She didn't feel it, and probably didn't understand why I was doing it. But I knew why I was doing it, I was doing it to correct a high blood sugar, a high blood sugar with the potential to irreversibly damage my body, I was doing it so I could eat my food and avoid a blood sugar spike that would make me feel weak and thirsty- then making my day not so enjoyable.

Finger pricking.
When I go to clinic to get my hba1c test done I use my pricker to give them a sample of blood from which they can measure my average blood glucose test. The nurses probably don't know that that finger prick is the 4th one of the day...but what they do know is that it will be the final one that will sum up all my previous finger pricks that I did the months before to check my blood sugar. It will be the one that reflects the last three months of my diabetes management. When they knock on the door and hand it to my consultant, it's still only a number, it's still just a finger prick.

What I am trying to say is that there is so much more to what's on the surface. There is an emotional side to a life with type one diabetes that many people except for parents and family do not see. But just because type one diabetes is tough- it does not mean it is the worst thing in the world. Despite the challenges I face with type one every day I still smile through it.

Type one diabetes is the reason that I have met some wonderful people on Facebook and on Twitter, it is the reason for my blog which is something I am extremely proud of, it is the reason that I got to speak in the House of Commons, it is the reason that I am a better person, stronger, even more grateful and appreciative of all that I have than I was before June 21st 2009.

There is a silver lining in living with type one diabetes. It taught me to be more responsible, it opened up the doors to a life I never thought I would lead, there are days when of course, I feel frustrated, I want there to be a cure and the doors to a life with type one to be closed- I mean, blood sugar fluctuations make me feel sick, shaky, moody, weak, sometimes the finger pricking and injections sting...it's okay to not be okay sometimes. Hiding behind a smile is never easy so some days I just need to release my emotions. My life is in my hands every day, that's a heavy weight to carry.

Diabetes changed my life in 2009, but it could have been worse.
I am proud to be type one diabetic despite the challenges it presents me with each and every day.

So, what's it like?
It's tough but there is a silver lining.
I have learnt to embrace this relentless disease and I will continue to do so. I want it to be cured, but right now there is no cure so I just need to deal with the cards I have been dealt in terms of type one diabetes and know that there will be a day when I can say I used to be a type one diabetic. Just hold on. I know I'm strong enough to be a type one diabetic, I may not believe it some days but I know I am. With the support of my parents, family and friends, I am strong.

And so is every other type one diabetic in this world- never give up the fight.

-Ellie
[Peace&Insulin]

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