The Window To My Soul ~ An Update.

Diabetic Retinopathy

An idea of how the world currently appears to me.

It’s been six weeks since my last major eye haemorrhage. My vision has slowly been deteriorating, even as my eyes begin to adjust more to limited vision.

I have constant bruises on my body from where I bump into things, and misjudge doorways and bench tops. Being visually impaired whilst living with a three year old is like competing in a crazy obstacle course, blind folded. I end every day with pain killers, for the splitting headache caused by constant eye strain.

I did manage to pull myself out of the depression that was threatening to engulf me. Admittedly through seeing the Dr to increase my medication, but hey, whatever it takes to keep that Black Dog at bay.

I am not defeated any more. I am determined.

My eye specialist told me he thinks I should have a vitrectomy, surgery that I have already had on my other eye. (basically remove the vitreous gel from my eye, that is full of blood from the haemorrhage) If it was successful, it could mean clear vision for the first time in over four years. I may be able to drive again. The specialist even believes it may be possible for me to fall pregnant again, without the risk of blindness.  (A big maybe, but still – hope!)

Can you imagine? Can you imagine how incredibly life changing it could be if the surgery worked?

If you can imagine that, then I’m sure you can imagine how completely devastating it was when the surgeon had a quick flick through my (very thick) file and said no. No, he thinks I should wait. Apparently waiting for FOUR FUCKING YEARS is not long enough. Bye bye, on your way, see you in a few months.

After I cried all the way home, I realised, NO.  I need to stop feeling defeated, I need to fight for the quality of life I deserve, that my family deserve. This surgeon who looked at my history for all of 10 seconds, has no idea what it is like to live like this. He has no idea how it feels to not remember what life looks like when your vision isn’t clouded by blood. He has no idea what it feels like to have never seen your own daughter, with clear vision. He has no idea of what if feels like to be given hope for a life that had been all but given up on.

CleverFacebookStatusMindPictures-6640

On Wednesday I am travelling in to the city to see a new surgeon, and get a second opinion. And I will not leave his office, until I am satisfied that he has a damn good idea of what my life is like; what it has been like, for the past four years. And surely, SURELY he can’t deny me that chance?

Please send me your prayers, positive vibes, strength, hugs, whatever it is you believe can help me, because I am getting ready to fight. I have spent my whole life feeling defeated by my circumstances, not this time.  There is nothing more dangerous than a person who has nothing to lose, and something to hope.

The Window To My Soul.

The eyes are the window to the soul

My windows are broken, and the shards are tugging and tearing at my soul.

Yesterday I had another haemorrhage in my eye, the worst I’ve had in a long time. (You can read more about my battle with Diabetic Retinopathy here)

The blood has clouded my vision so badly, I can barely see. As usual, the specialists have no answers. They can’t tell me why I have had another bleed. They can’t tell me why years of laser therapy hasn’t stopped the haemorrhages. They can’t fix it. They can’t tell me if it will get better, or worse. All they tell me is I have to wait. Wait to see if the blood reabsorbs. Wait to see if it bleeds more.

I feel broken, and defeated. I’m 33 years old, and I already can’t drive, I already can’t carry more children. I feel like I am edging closer and closer to blindness, and I am terrified. I am scared and angry. It’s taken me half an hour just to write these two paragraphs, because I just. can’t. see.

I don’t know what to do. I don’t have time for this. My whole life is focused on helping my girl, getting her through each day, fighting for her, tackling one hurdle after another with her.

And now I can’t see? What the fuck?

My eyes are the window to my soul, and the view ain’t pretty.

One Moment Of Time.

*Trigger warning: This post may raise issues for readers who have experience with depression and/or suicide.*

lifeline

 

I’m lying in bed writing this on my phone. I don’t know if I’ll publish it. I’ve always hated bloggers who appear to jump on a bandwagon. Turn a tragedy into blog fodder.

The thing is, I can’t stop thinking about Charlotte Dawson.

I can’t stop thinking about the fact that she has died. That there is no second chance, no opportunity for her to change her mind. She can’t hear all the wonderful things that people are saying about her. She hasn’t got a chance to believe them. In one moment of time, that insidious disease took her, in that one moment of time she was too defeated to fight it any longer.

I wasn’t privileged to know her personally, to call her a friend. I can’t fully explain why her death is keeping me awake at night, why I can’t stop crying.

Maybe because I wish I had known her?

I wish I could have said ‘Thank you.’ Thank you for being so honest about something that people can’t seem to talk about. Thank you for giving a voice to depression, thank you for saying sometimes it is just too fucking hard. Thank you for standing up for those who couldn’t fight back against the bullies. Thank you for fighting so damn hard against your own demons so you could offer hope to others fighting against theirs.

I wish I could say, ‘I’m sorry.’ I’m sorry that you didn’t know what you meant to people. I’m sorry that you couldn’t believe how loved you were. I’m sorry that when that black dog caught up with you, when it pinned you down, and stared you in the eye, there was no escape.

I’ve been that close before. I’ve been backed into that corner. I lived. I got that second chance. A few years later, my life is in a completely different place. I’m still running from the black dog, but I am stronger now. I got the time to change my mind. In one moment of time, I was lucky. I didn’t die. And in time, I didn’t want to any more.

I so desperately want to turn back time. I so desperately want to give her the gift of hindsight. That’s the thing. Suicide is forever. There is no turning back. It’s too late to realise you weren’t alone, that people cared.  You can’t argue with depression once you’re dead. It’s too late. It’s too fucking late.

*Edited to add- A petition has been started for the Australian Government to introduce Charlotte’s Law ~ Tougher Cyber Bullying Legislation. You can sign the petition here.   

If you need urgent support, or are worried about someone you can contact the following agencies for help:

Lifeline
13 11 14 – 24/7 telephone crisis support, as well as online one-one-one crisis support (8pm-Midnight AEST)

Kids Helpline
1800 55 1800 – 24/7 telephone counseling for young people 5–25 years, as well as online and email counseling (check website for hours)

Suicide Call Back Service
1300 659 467 – 24/7 professional telephone crisis support for people at risk of suicide, carers and bereaved, as well as online resources and information

Six Years.

~10th of October 2007~

ava

 

I walked into a room one day, thinking I carried one,

I learnt I was a mummy to two, yet walked away with none.

Identical in every way, including the angel wings they’d grown.

Before I had a chance to know them, to heaven they had flown.

They blessed me with their sister, a girl wise beyond her years, ella

I think they may have told her about all my fallen tears.

My destiny in life is only one child to birth,

To hold and love and to mother on this earth.

So my daughter will be my only child that you see,

But always in my heart, I am a mother to three.

heart

R U OK? I wasn’t.

*Trigger warning: This post may raise issues for readers who have experience with self-harm, depression or suicide.*

This is the most difficult post I have written on my blog. It is a side of myself that I keep very private. What I am writing about will come as a surprise to most people I know, including some very close friends.  And that is kind of the point. Mental illness is not black and white. It is not always obvious. It can be very dangerous. It is possible to survive it though, and come out the other side stronger.

September 13th is R U OK? Day. A day to encourage people to ask friends, family and colleagues ‘Are you OK?’  Not just on this one day, but regularly, to open the channels of communication around depression, anxiety, suicide.R U OK? Day 2013

People often assume that they know what depression looks like. People like to think that they would notice if something was wrong, really wrong, with someone they are close to. That they don’t need to ask “Are you OK?” because surely a friend would tell them if they weren’t.

 

A few years ago, I was so far from OK that I thought I’d never be OK again.

I have always been honest and upfront about my depression on this blog. Regular readers are aware of my ups and downs, my battles with the Black Dog.

What I have never shared though, what I have been too ashamed to share, is that for three years, I was a self harmer. I regularly cut myself. I was not a teenager, an ‘emo’, or outwardly depressed or morbid. I was in my mid twenties, and worked as a coordinator. I would walk around the office, smiling and joking with my colleagues, with bandages on my thighs, hidden by tights and long skirts. I had close friends who I would regularly see during this time, go out to dinner, movies, have D&M’s about relationships. They still don’t know that I was a ‘cutter’.

The first time I cut was a few days after I left my first husband. I felt so sad, so lost, so out of control, I just didn’t know what to do. There was so much pain inside of me that I felt like I was being consumed. I don’t know what thought process occurred that night when I picked up a knife and cut my upper arm, over and over again until it bled. To this day, I can’t tell you why, just that I felt better after it. It was almost like a release, to see that blood, to feel the tangible pain of cutting, as opposed to the conceptual pain inside that ate away at me.

It became my coping mechanism. It was a way I could control my pain, on my own terms. I became smarter about it. I cut my upper thighs, which could be easily hidden. Once I finished, once I felt that release, I was taken over by the most incredible sense of calm. I would clean myself up, wash away the blood. I would apply antiseptic cream, to avoid infection, and would tightly bandage my legs up, to stop the bleeding. The next day I would replace the bloody bandages, and get dressed for work. If someone watched me very closely, they may have noticed I walked a little more slowly, perhaps more stiffly. They may have noticed a slight wince cross my face as I sat down and stood up. They would have thought I’d probably gone for a run the night before. Maybe to the gym.

I cut myself, on and off, for about three years. Sometimes I felt like I was watching myself from a distance. I was horrified at what I was doing. This was crazy. I was crazy. Who does this to themselves? It was dangerous. Sometimes the cuts were deep, and it was hard to stop the bleeding. I used to think to myself, “Is this what you want? To die like this, and everyone to find out how insane you are?”  but I didn’t know how to stop. I hated myself, I was disgusted by myself. A voice inside my head would tell me over and over ‘you are so fucked up’. I felt damaged beyond repair.

I was leading a double life. On the outside, I was so ‘normal’. There are people probably reading this right now, who knew me during that time, and I imagine they will be pretty shocked. The only outward difference was that I stopped wearing short skirts and shorts, stopped wearing bathers and started wearing long board shorts. Certainly nothing that would raise any alarm bells. There were a few people that I told at the time. I don’t think they knew what to say, how to help, understandably. Self harm is not something that is spoken about, or if it is, there seems to be a perception that it’s something teenage girls do for attention.

Did I do it for attention? I don’t know. I didn’t think so at the time, but maybe it was a cry for help? A scream for help? Looking back at that time of my life, I feel like I was balancing on the edge of insanity. On the one side there was the part of me that understood how crazy this was, how stupid, how dangerous. And on the other side was the part of me that had given up. That had decided that this was my life, this was all I was worth. That things would never get better, and it would always hurt this much, just to exist.

Then one day, I stopped. I was in an emotional state where I would normally resort to cutting, and I remember, so clearly, just thinking ‘No. I don’t want to do this anymore.’ I lay my head down on the table, and I cried and cried. And without realising it at the time, I chose life. I got rid of all the knives and scissors in the house, and eventually the urge to cut faded away. (I don’t mean to simplify what I went through, I was seeing a psychologist on and off throughout this time, and worked on a lot of issues. I am just trying to be succinct and to the point for the purpose of this post, otherwise you would be reading for days!)

Fast forward a few years, and how my life has changed. I am married to a good, kind man, and a mother to an almost three year old child. That time of my life is like a nightmare, I can’t quite believe that it was real. Except I carry the scars on my body, to this day. I still can’t wear bathers. If I buy a dress or shorts, I have to test them sitting down first, to make sure they don’t ride up and reveal my scars. I wont get my legs waxed or spray tans, in case someone asks about them. One day I will have to explain to my daughter how I got them, just like I had to explain to my now husband, when we first started dating.

My scars remind me every day how far I have come. How close to the edge I was, and how lucky I am to be living the life I am now. Believe me when I tell you, I never thought I would be where I am today. I didn’t think I would make it.

You think that you know the people around you. The people you work with, the friends in your social circles. You think you would notice if someone was struggling with life. But maybe you wouldn’t. And that is why R U OK Day is so important. Not because that’s the day where you go around asking everyone “R U OK?” but because it raises awareness and encourages people to start talking, and more importantly to start listening.

You can learn more about R U OK Day here.

If you need urgent support, or are worried about someone you can contact the following agencies for help:

Lifeline
13 11 14 – 24/7 telephone crisis support, as well as online one-one-one crisis support (8pm-Midnight AEST)

Kids Helpline
1800 55 1800 – 24/7 telephone counseling for young people 5–25 years, as well as online and email counseling (check website for hours)

Suicide Call Back Service
1300 659 467 – 24/7 professional telephone crisis support for people at risk of suicide, carers and bereaved, as well as online resources and information

I am OK now. Are you OK?

Diabetes Denial.

It was Melbourne Cup Day, 1989. I sat on the bed in the Drs surgery, swinging my legs, waiting, whilst the Dr rang the local hospital to let them know I would be coming in. I was nine years old, and our GP had just given me a finger prick test and diagnosed me with Insulin Dependent Diabetes. (Also known at Type One Diabetes or Juvenile Diabetes) I had no idea that my life would never be the same again.

Several hours later, I lay in a hospital bed for the first time in my life. My parents had just left, and I was sobbing, that hiccupping crying, where you can’t get any words out. Two nurses walked into my room. The younger nurse told me not to worry, that she would hold my hand whilst I had an injection of insulin. The older, scarier nurse told her, “No you won’t. Jane is going to give it to herself”. I hated her in that moment, but after I had successfully given myself my first injection, I stopped crying. I was so proud of myself, I skipped down the hall to excitedly call my mum, and tell her that I’d done it all by myself. What a bittersweet phone call that must have been for my mother. Her nine year old daughter so excited and proud that she had given herself an injection. The first injection of Insulin, which would be needed every day, several times a day, for the rest of her life.

That nurse did me a huge service that day. From that moment on, I never let anyone else do my injections. It actually afforded me much more freedom than other children diagnosed at that age, who had to rely on their parents to inject them. I took charge of my disease right from the start. I was responsible for checking my own blood glucose levels, pricking my finger several times a day. I would count carbohydrates, to make sure I was eating the correct amount of food, for the amount of insulin I was taking. At the start I had two injections a day, which increased to four once I switched from syringes to a ‘pen’ system, already preloaded with insulin.

diabetes

I used to think that it was a blessing to be diagnosed so young, I adjusted quickly, and can barely remember life before Diabetes. The problem was though, at that age, long term complications are a difficult concept to grasp. As I moved into my teenage years, I wanted to ‘fit in’. I wanted to eat the same food as everyone else. I didn’t want to be the ‘sick’ kid who needed injections to live. I couldn’t be bothered doing blood tests, and would often lie to my parents about my sugar levels, as I would have secretly eaten chocolate or lollies, or skipped an insulin injection, sending my readings sky high.

I wish I could say that as I got older, I matured, and started taking better care of my Diabetes, but unfortunately, that wasn’t the case. I started smoking, and in my later teens, drinking. Drs would still try and tell me about the risk of long term complications, but I chose to live, somewhat, in a state of denial. Once I moved out of home, I essentially stopped testing my sugars altogether. With no one to ride me about it, I basically lived like I wasn’t a Diabetic. I would still have my insulin injections, but often at the wrong times, just when I could squeeze them in around whatever else I was doing. I ate what I wanted. By the time I was in my 20’s, my life was in such a spiral of dysfunction, having Diabetes seemed like the least of my problems.

The problem with Diabetes is, if you ignore it, it won’t go away. It will kill you. Slowly. Those long term complications that the Drs kept banging on about include blindness, gangrene, organ failure.

When I found out I was pregnant in 2010, suddenly diabetes wasn’t just something in the background of my life. It became impossible to ignore once I realised the risk it posed to my unborn baby. Sadly, in a way, it took being responsible for another person’s body, for me to start looking after my own.  Blood testing became a priority; I would check my sugar levels nearly every hour. I was having up to seven insulin injection a day. I went back to counting carbs again, watching every single thing I ate.

At around five months pregnant, I was diagnosed as having developed Diabetic Retinopathy, an eye condition that lead to abnormal blood vessels growing in my eyes, then haemorrhaging. I could have gone blind. If I have another pregnancy, there is a very high risk I will go blind. My vision is so affected that I can no longer drive. Diabetic Retinopathy is a risk for all pregnant diabetic women. Was I more at risk because I didn’t look after my Diabetes properly before pregnancy? Maybe. Maybe not. It’s impossible to predict, but I assure you, I wish it was something I didn’t have to even consider.

My beautiful daughter was born safely, albeit, two months early. She is a blessing, and I am so lucky to have her. My body owed me nothing, after the way I had treated it for so many years.

Twenty four years after diagnosis, and I still have a complicated relationship with Diabetes. I lapsed a lot after Milla was born. Once I stopped expressing, I became less vigilant with blood tests again. I stopped seeing my endocrinologist (Diabetes specialist). I blame my Diabetes for not being able to drive, for not being able to safely attempt another pregnancy. I’m angry. It’s not fair. I feel all those emotions that I wasn’t capable of when I was diagnosed at nine years old.  The trouble is now, ‘long term complications’ are not some far away abstract concepts. They are on my door step.

 I am a mother and a wife, and I owe it to my family to take this disease seriously. I can’t change what I’ve done in the past, the damage that may already be done. I can change what I do from this moment on though. It’s time to start valuing my life as much as I value the lives of my loved ones.

*This post was brought to you in partnership with Accu-Chek blood glucose monitors*

I Choose Love.

By now most people will have seen the horrific photos and footage from the murder of Drummer Lee Rigby in Woolwich, London, yesterday. The graphic details and images of this crime deeply sickened and disturbed me, as I’m sure they did, many others.

That was the point of this crime. It was a hate crime. The perpetrators wanted to shock and horrify people, they wanted to incite hatred and anger. They want everyone to remember their faces, their words, the horror.

I will not do what they want. I will not remember them.

I will remember this face; Ingrid Loyau-Kennett.

Source- Herald Sun
Source- Herald Sun

Ms Loyau-Kennett kept the armed perpetrator talking to her for over five minutes, because, in her words; there were so many people around that I didn’t want him to get scared or agitated. I kept talking to him to keep him occupied.”  Her actions, and clear thinking, in the face of abhorrent evil, prevented anyone else at the scene being harmed and could possibly have saved lives. I will remember her, and what she did that day.

I will remember this image, of Drummer Lee Rigby.

Source- Herald Sun
Source- Herald Sun

Drummer Rigby was 25 years old. He had a wife, and a two year son, called Jack. His mates called him “Riggers”.

He has been described, in a statement from his family, as “cheeky and humourous” ,  “loving son, husband, father ,brother and uncle”, “He would do anything for anybody – he always looked after his sisters and always protected them.”

I will remember Lee Rigby. I will remember his face, how proud he looks in his uniform. I will remember his family, his son Jack, his wife, his sisters, his parents. I will remember what a good bloke he sounds like.

I will not remember the evil that took his life. I will not look at their faces, I will not watch their horror. I will not do what they want.

They have not incited hatred in me, but love and compassion for a man and his family whom I have never met, but will always remember.

Rest In Peace Drummer Lee Rigby

1987~2013

What to write?

When I started this blog, it was all about the “journey”. Where I had been and what I had to do to get to where I am now. To get my ‘Happily Ever After’. Married to my soul mate, mother to my beautiful daughter. All the crap that I lived through, all the pain and hurt, and mistakes that I had made, to get me to this point. To my family. It wasn’t smooth sailing. Things were lost along the way. But here I am, right, living my dream.

Except my daughter is autistic. Except my beautiful, strong, perfect daughter is autistic. And our lives are changed forever. Not necessarily for the worst. Not necessarily for the best. Just changed.

I try to wear the ‘brave face’. When the doctor asks how I feel about this diagnosis, I say it’s not ideal, but at least now we’ll get the help we need, the help Milla needs. Same story to my friends really. Early intervention, still the same girl (of course, it’s my Mooie ) getting the help we need…. blah blah blah…

But really, I’m fucking pissed off. I am pissed off, that after everything, my baby is faced with this. I don’t want to be brave, or strong, or inspirational. I am none of those things. I am lost and scare and flailing (failing?). I want to call bullshit. Bullshit, that after working this hard to get here, fighting so many demons, kicking myself up the arse and finally getting my shit together,  finding my happily ever after; my baby is autistic. BULLSHIT.

I don’t want this blog to be about autism. I don’t want to constantly write these miserable, depressing posts.

I don’t know what to write, because right now my mind is black, and angry, and so fucking tired. Today has been a hard day. My baby girl has been particularly ‘autistic’, as my husband and I call it, with an ironic smile. Ironic, because if we don’t smile, and try and make a joke about the craziness that is played out here, by our beloved ‘dictator’, we would just cry and cry. Or I would. Or I am.

blog6

Reflections Five Years On.

Five years and one day ago, I sat in a small room on my own, whilst a sonographer told me that not only was I carrying identical twins, but they had both died.

Five years ago today I walked into a hospital, with two tiny baby inside me, and woke up from a general anaesthetic empty. With a gaping hole not just where my babies had been, but also where my heart had been.

Time passed. Life went on. I finally let go of my toxic partner. I started to heal. I still carried that ache inside me, where they were missing, but it didn’t consume me anymore. I met my husband, we had our beautiful daughter. Five years later, I am living a beautiful life.

A life I wouldn’t be living, if my twins had lived. I struggle to make sense of this. How can I grieve them, miss the possibility of them, yet know if they were here, I would not have this life. I would not have my daughter.

My heart aches for all that I lost, those two little souls, my children. I was their mother, and I would have given them a beautiful life, but it wouldn’t be this life. They would not have had a father in their life. They would not have had the loving strong family unit that my daughter has. They would not have had financial security. We would have made it, the three of us, I have no doubt. None of that mattered, then. I would have fought, and struggled, and done everything in my power to give them the life that they deserved, if I had of been given the chance. I never got that chance.

And time keeps moving, and now I have this life. This life, my little family, that I wouldn’t give up for anything in the world. I try to understand how the twins fit in this life. I know that they are my daughters siblings. I believe that they delivered her to me, safely. I know that I think about them, wonder what they would have looked like, what their little personalities would have been like. I know every time I see twins, there is a twinge inside me, a tiny stab, a vision of what could have been.

People say that everything happens for a reason, but I don’t think I believe that. No matter how awful, and difficult my circumstances were, I don’t believe there was ever a good enough reason for them to have been taken from me. And even now, whilst I live happily ever after with my husband and daughter, I can’t believe that they had to die, so I could have this life.

Maybe there is no plan? Maybe sometimes really awful, shitty things happen to people, and sometimes wonderful, beautiful miracles happen to those same people? Maybe life just doesn’t make sense, and all you can do is keep getting up each morning, keep putting one foot in front of the other, and have faith that the world keeps turning, no matter what happens.

I can’t make sense of why I lost my babies.There is no sense. I did not have a choice. I do know that I am a different person because of them. I do know that I will never forget them. I do know that they will always be my children, no matter what happens, no matter how many years pass. I know that every October, the tears will flow, tears that I keep under wrap most of the time. I know that when I think of them, of the short time we had together, I will curse the universe for taking them from me.

I can’t understand how my beautiful angels could fit into the life I have now. This is what I do know ~ I can grieve for them, cry for them, wish everything was different, long to hold them in my arms. I can feel all of that, and still be grateful for all that I have now, for my husband and my daughter. One thing does not cancel out the other. Life does not make sense. The ‘what ifs’ cannot change a thing. This is my life. I am a mother to a daughter on earth and two angels in Heaven. I will love them, remember them, cherish them, until the day comes that we will be together again. That is all I know. xx

294202_134471906645549_124355620990511_204606_5903344_n1