Friday, 7 September 2012

One Year

One year ago today my life changed forever.   September 7, 2011 is a day I will never forget.  Out of all the "big" days in my life, none of them are as clear as this one was.  I can tell you what I had for breakfast (weetabix with milk and a Starbucks coffee) and  I can tell you what I was wearing (a grey pinstripe summer dress from H&M, size 0).  I can tell you how I felt.  Exhausted, exhausted to the point of collapse, stressed, thirsty and hungry.  And skinny, way to skinny.  Pretty much how I had felt for quite some time.  

I will never forget the words telling me I had a serious chronic disease, Type 1 diabetes.  My reaction was so calm, I could not move or talk.  I was in a dream, a nightmare...instant denial.  I will never forget the first injection...so close to getting the needle in and then me breaking down.  The sudden knowledge that this was it.  Never again would I eat whatever I wanted, exercise whenever I wanted...go to sleep without fear.  I had a disease that was eating away at my body - causing destruction that may never stop no matter what I do to prevent it. Each and every day I read of young, seemingly healthy, model Type 1 diabetics who lose their lives to this disease.  I read these stories and it scares me to my very core.  On that day I was given a life sentence and a hell of a lot of responsibility.  My survival is in my hands, it is up to me...and me only.  And even then, a lot is left to fate.

I am not quite sure that I can express how I feel today into words.  I don't feel that it is a day to celebrate.  It was the worst day of my life.  Sound selfish?  Well it is selfish and that is human nature.  Our ultimate instinct as human beings is to preserve our own life...and I can't help but feel that I am failing. The outside world sees a happy girl with a smile on her face, however no matter how hard I work at it, no matter how much I eat well, exercise regularly, no matter how positive I stay and how I carry on with my day to day life, it is there.  It is part of me now.  It's not leaving and is a serious monkey on my back.  I appear to be a well young women but inside no one really knows what is going on and how damn hard this is.  I try to explain to others, but get frustrated and then go quiet once again.  I have shed more tears in the last year than I have in my entire life.  I don't talk about it much and rarely will show this to the ones I should.

The last year has been the biggest challenge of my life.  Despite the amazing support I have received, and I mean amazing (you all know who you are)  I cannot express in words how it feels to live day to day with this disease.  It is always there, always in the back of my mind, it never gives me a break, never leaves.  Every decision I make during the day has to take diabetes into consideration.  Whether it be the food I eat, the insulin I have to take, the activity I do, the amount of sleep I get, the time of the month it is, the stress I feel...all of it effects my diabetes.  Hell, even if all of this is under control, 9 times out of 10 it throws you a curve ball anyway.

So on this day how do I feel?  A part of me is extremely glad and grateful that I finally got to the bottom of what was wrong with me.  I really don't think that I would be here today if this had not been discovered.  I do feel like a different person, some for the good, some for the bad.  I am much more aware of my body and what it needs.  I have never ate this healthy, ever, it is kind of sickening.  I have never appreciated life more.  I have stopped taking thing for granted.  I look healthier than I have for years (well at least I think so, the stick woman thing did not suit me).  I have a ton of energy and feel like my drive to live and accomplish my goals is back.  These are the positives.

Mostly what I feel is anger.  I thought by now I would have let go of the anger, but I have not.  I am angry that I have had to go through all of this, suffer with so many complications, lose my fitness and generally be dealt another blow in life.  I feel that I have dealt with enough in my life (that would require an entire new blog to explain my life and I am angry I have been dealt another bad card).  With the anger comes frustration to an extreme and unbelievable sadness.  In a totally irrational way I feel like I have failed myself, that I am weak.  Each and every day feels like a battle, so much self judgement.  Every time I check my blood sugars the four second delay sometimes feels like judgement hour.  What have I done wrong? Ate wrong? Calculated wrong?  So many emotions tied to each and every reading.  So many emotions tied to my food decisions and insulin decisions.  So many emotions tied to every high and low.  I get stages of feeling so grumpy and teary and it almost always is because of wonky blood sugars.  I used to be able to get up and run 20km without blinking an eye. Breaks me that now it is just not so easy, never will be.  My frustration is huge.  I eat better than I could ever imagine, exercise diligently and get great sleep.  I have trouble losing weight (which my doctor assures will change as my body adapts) and I cannot go for my beloved long run without ID, glucose, glucose monitor, test strips, medical ID and money just in case.  This makes me feel weak and vulnerable.  I certainly don't want pity and I definitely know that there are others much, much, much worse off.  But this is how I feel.

Perhaps the only bigger thing I feel than anger is determination.  I very much want to tell diabetes to F' itself.  I have always been stubborn (albeit quiet on the outside, but extremely stubborn and determined on the inside which may surprise a lot of you).  I am determined to get the best control that I can, to learn as much as I can, to do the things that many may think I can't...to be me.  Sounds cliche but I will not allow this disease to determine who I am.  I will run another marathon, I will do a half ironman and goddammit one day I will be an Ironman :)

Where do I go from here?  I have to learn to accept that my old way of life is no longer here.  I cannot indulge as I did in food, exercise, stress, lack of sleep etc. without the risk of further complications.  I have to learn to accept that this is the way it is and stop feeling sorry for myself.  I have not only diabetes but celiac as well.  I cannot eat a simple sandwich or eat whatever I want...not if I want to be well. I must take my nutrition extremely seriously and educate myself on how to feel well.  But....I have the insulin pump coming and this will give me a new lease on life! I know it!

So today all I can do is feel proud for how far I have come...and let go of the life I had.  My goal in the next year is to educate people around me and perhaps people who do now know me about what it is like to live with Type 1 diabetes.  It is a very serious chronic disease that the public need to know about.  They need to know that we deserve a cure...we need a cure. 

Today I mourn the old me.  I am still me, but different.  I have come a long way in a year and to be honest I am not sure how I got through it.  There is one person in particular who has been by my side the entire way and he knows who he is. I love you.

An anniversary that does not require champagne...but perhaps deserves a pat on the back.


12 comments:

  1. Personally I think you are doing amazingly well! You have been given a huge change in your life - you are bound to have many conflicting emotions about it and if you weren't I'd say you were in denial. I honestly think it's part of the process.

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    1. Thanks Heather for your amazing support!

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  2. I love this post. As another newly diagnosed diabetic it's nice to know I'm not the only one who feels this way. Focus on the determination, and don't back down from the D-bully!

    -Ali

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    1. Thank you Ali. I checked out your blog and it is awesome!

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  3. This is heartfelt, genuine, raw and TRUE. I still feel anger and it's not selfish at all. Not one bit. Nobody will ever understand what it's like for you, not even me and I have diabetes and celiac.
    I love that you wrote all of this, there are other people out there that need to read this. It changes us into different people and that's just the way it is.
    You will get through it and you will feel anger at many times but it will fade a bit year by year. I know it will because it did for me. Just don't hold onto it for as long as I did. You're already 20 steps ahead. :)

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    1. Thanks Scully! It can be hard to bear your soul to the world, but extremely therapeutic!

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  4. One thing I hope you feel in the near future is the power that your story and words have on others. It takes some serious balls to lay things out there as you have in this post - and sometimes, I feel like talking about this kind of ugly stuff takes the power away from it, even if just a little. Talking about it helps others see that they aren't the only ones dealing with the myriad of emotions this disease brings into our lives.

    You may think you're being selfish, but I think you're being empowering.

    Keep it up.

    Kim (www.youcandothisproject.com)

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    1. Thank you so much Kim for your response - your blog inspires and empowers so many!

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  5. It's six years for me and your post brought me right back to my first year. It's so hard to process all the emotions but it will get to be more routine. The hardest part for me was to realize that life won't ever be the same as before. Then I met some amazing T1 friends and I am feeling so much stronger. Just like Kim's project mantra says.... You can do this!

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    1. Thanks Liz for commenting! I read your blog and take strength from people like you :)

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  6. The anniversary of your diagnosis is one day before mine!

    It took me a long time to figure out how to make sense of many of the feelings that you mentioned in your post, especially about looking well but being sick. Some I'm still working through. Even before I left the hospital (thirteen years ago today) I was having trouble figuring out how to answer the doctors and nurses who asked how I was. Saying "I'm well... except for the diabetes" just seemed like the most absurd thing. I still struggle with that from time to time, but it does get easier.

    Eventually I realized that diabetes wasn't some separate thing but is part of who I am, as much as I hate that fact. I still get pretty bitter on occasion about how part of my body failed me and makes some things so much more difficult, and I go through phases where I wonder whether I'm making the right choices between living a happy life and doing the most that I can to have "normal" BGs. It's a continuously changing situation, and I don't know if I'll figure out the right balance. And, yes, I still externalize my illness every once in awhile and tell it to go fuck itself.

    But it gets easier. I suspect that as long as I have this disease, I'll always have it in my mind somewhere, but eventually it just becomes another "thing" in life. (At least, it has for me.)

    Keep living your life and keep writing!

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  7. Hey Jocelyn,

    This is a really powerful post.

    I think it's healthy and important to share your story, just as you've done. It helps you work through all of the confusing and contradicting stuff inside of you, and also helps the world see another perspective on this crazy disease.

    Hang in there, and keep writing!

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