Take me back, I often think...but when life forces you to accept 'Change' ... the take me backs disappear, to find your courage & resilience

There are definitely times I question my existence, times I wonder why God didn't take me when he had the chance? Times I say Why me? Times my sight is so weary and blurry that I can't even cry anymore with frustration, but keep pushing through..

While driving one day, reversing, to get my car into a parking spot,  one of my eyes got the better of me, I wear contact lenses to protect them (mainly). I backed into another car; all within the space of a few seconds as I lost my concentration trying to put back in place a contact lens that was merely falling out of place .. It was early hours of the morning in mid-winter too (dark and foggy) I was so angry and frustrated… just wanted to stop and cry! But I couldn't as I had to run to catch a train… I did inspect the car, no damage, but slightly to mine… (but that’s ok)

I learnt a valuable lesson that day, and the days to follow… my life has changed so much!.. Things, people, circumstances and my body will let me down…

This winter hasn't been too kind to me, from falling ill, to being identified with a few other complications, and long term effects or illnesses I have never had in my life before…. So this is what Stevens Johnson Syndrome does to you, well after it’s gone and you’re out of the hospital. It changes your life forever… it changes your life to become weaker, more susceptible to illness & more open to change…

A year and a half back I still recall my life, more so my eyes and go, wow that was what it was like to have good health...and I didn’t value it.. Today my eyes are a gift from God and I value them a thousand fold.

The lesson it has taught me is that change in our lives is inevitable, we can either accept it wholeheartedly or complain about it. Either way it will happen….

We must make the most of it…  Walk away from things that no longer serve us or make us whole, or bring out the best in us & live amongst what nourishes our soul

It could be illness, a change in a job, a difficult move we have to make, a change in relationships, a number of different things that has changed your life….

From that day I felt life saying ‘slow down’…what you can do has changed dramatically…
plans change, nothing is certain anymore and the next day could be a challenge or run smoothly..

As the doctors told my parents, my recovery was dramatic, so are the changes it has made to me now…

So to continue the story, I felt like I had been a bad person running into the back of someone’s car (and they were not there) but there was no damage another passer by inspected it too as I asked him to, and he said “I wouldn't worry about it”. I still felt so bad in my heart for not leaving a note saying I rammed into your car, please contact me so, least so I can tell you the truth just so you are aware & apologize… 
...I hurriedly ran to the train and there was this lady stumbling with her clothes, a bag, one shoe in hand the other on the floor trying to validate her ticket and to get on the train that was waiting there (ready to go).. I said can I give you a hand picked up her belongings and rushed with her to the train. She turned around, and said ‘Thank you, you saved my day’… I am not trying to emphasize about the helping hand, not in any way, but just saying, the world offers us the bad and the good… after hearing that I could have helped someone in some small way, then therein lies a complete day , it felt like a sliding doors moment (if anyone has seen the movie, you will get the reference ) ..

Change is scary especially when it’s a decline, or so we think.. Something’s happen in reverse, or for the worst, right?

So we think… but I am starting to think all change is good.. Since then there have been big and small changes in my life…mostly taking a turn that I don’t understand..

But that’s ok, we don’t need to understand everything, so long as we can be happy… Happiness lies within yourself..

If you haven’t read it, you should try to read the book 'Who Moved My Cheese?".. 

Bring back my old life, often said in my mind.. Not so much anymore..  Enjoy the now, that’s what I think of… take the opportunities while they are there… thank and appreciate those that have been a loyal source of strength to you, pray for all those that cross paths with you good or bad, they brought about change too, and bless everyone that comes your way… not to say there still aren't days I go back on this... but it is more inbuilt now.. 

Life has a way of making you accept change… Some forced and some changes are optional, or it gives you many options, whichever one you choose have the courage of your convictions & take each day as it’s meaningful … I learnt the hard way, that your health is as important as the sun is to the plants, as food is for our body and as happiness is for our soul.. It can be pivotal… but if it takes a turn let it… you never know what adventures, lessons, people and glimmer of hope lies there..  Through this I have been the lucky one to cross paths with some wonderful people out there, known & unknown to me.. and that's the plot twist about change... if it starts in decline, or for the better, it's always good ---  

Thank you one and all for those who have been in touch about this blog and have asked me to keep writing, I sincerely write what I learn and what I would like to share... just in case you may be having a day or an experience similar to mine.. 

I also promised pictures of my progress throughout my blog. which was why I initially started this blog. as a means of keeping those who were in touch and prayed for me about my progress.. talking about change and what it does.. these sayings below are worth a read and also a photo of change in my eyes, a day that it would just not stay open & was painful, and a good day (that they lasted) I wake up and never know how they are going to behave.. but I tend to take 'change' as my challenge for the day...

Change; own it.. 

One year ago....My sincere thanks....

One year ago...life took me by surprise.. usually surprises can be a good thing.. when I think of a surprise, I think of people hiding in a little room yelling out 'Surprise' when its your birthday or your celebrating something! or been taken somewhere you weren't told about, or having a surprise gift on your doorstep..

'Surprise' this time was of a whole different kind. when it happened it was the worst thing I was going through, it would have to be on my list of worst nightmares!
Life threw me a curve ball! indeed...

But one year to date, when I look back.. Phew! has life made me grow up...life has taught me lessons I would have never learnt.

It has made me deal with the worst kind of anger I have- anger I have for my own self; doing the wrong thing, at the wrong time... it has made me deal with depression, sadness, emptiness, loneliness. But in return it gave me the gift of perception, gratitude, an appreciation for each sense and a brand new lease on life..

It has made me value the moments that make me smile, but also the moments that don't. to realize the hilltops and the valleys in life, and cherish them both, as they both won't last forever...
It has made me see friends in people I would have never known, rekindle old friendships and made me wake up each morning with gratitude..

People have been asking me, recently, does it feel longer than a year ago, or less.. it feels like a hell of a lot longer than a year, when I was standing on a cold night in a bar in Melbourne having a few drinks with old school friends and then everything changed... little did I know I would spend the next almost 3 weeks in ICU and the next few months, having a whole new sense of myself..

I don't know if it is a good or a bad thing, that I feel like it it is longer than a year, but no one can answer that... all I know is it has been very rough seas, constant medical appointments, unpredictable health & a whole lot of sleepless nights, and sore eyes... a change in what I used to know of myself outwardly, and accepting the other challenges that come with it..

if I have bad day, each day at night I try to lay those negative thoughts to rest, I say to myself when I wake up. its a new one who knows what it holds, but I can make it consist of smiles, good memories, positivity and light..

it's like I was cruising along and it hit me with the most unexpected condition I still suffer with to date..and will probably for a long time to come... so be it...

The daily concerns this has thrown me is beyond anything I could have expected ...
This blog is to not re-live the past in any way, but to be thankful for the memories created in this one year... for the angels I have had the pleasure of meeting, the laughs shared, the cries you have heard from me, the concern shown , the understanding given when I have not been reliable, the constant care and love showered and the invaluable bonds formed throughout this year

Steven Johnson Syndrome/ Toxic Epidermal Necrolysis is deadly and is still not heard of widely enough, so here we are in August to help create awareness and I will send you a blue ribbon (for free) if you wish to wear it for at least one week of the month - for us survivors, and ones that lost the battle with it. and spread the knowledge, that you should always Educate before you medicate

It is not in anyway a regrettable experience, but one I will no doubt remember for the rest of my life, and from one year on - for all the good reasons.

Thank you..

"Taking a step backward, after taking a step forward is not a disaster, it's a cha-cha!" - says an Optimist

"Keep going, young lady" were the wise words of an elderly man I once met while I was working as a waitress in Australia, almost 9 years ago. my very first job in Australia, and my first experience integrating and living with other cultures and working here too..

 

This was in response to the boxing day Tsunami and when he found out I was from Sri Lanka, and how devastated he was for us, as our nation lost so much. He was inquiring  about my origin and then went on to encourage me and those other Sri Lankans he thought of that had been affected by this.  some had nothing, absolutely nothing at all.. they were shed to the bear minimum.. just that body and soul...

 

These words of his often kept playing on my mind... Keep going..

 

As most of you know, or those that follow this blog know, now, almost the past 9 months has been an uphill journey for  me...

 

How am I coping? not that great... on some days! and some days are far better than that..

Since my last blog, I have travelled to meet a 10 year old SJS survivor, and been able to spend some time with her and her family, been a bridesmaid for a very dear friend, about to be a God mother again,  participated in a Walk in Her Shoes challenge for CARE Australia, and well exceeded my goal, attended concerts and done things I have always wanted to do before my journey ends.... and looking forward to many more things the daily life offers me...and making the days count...

 

has it been easy? not by a long shot...

 

 

Recently my eyes have been giving me a lot of trouble.. from the constant sensation of something being stuck in there, to ingrown eye lashes rubbing against my eyes, to redness, and being sore.. Having trouble driving, to having trouble even facing the early rising sun. having face to face conversations with people is challenging due to focus issues, and just getting through daily activities, is a task..

  I often feel like my days are numbered..

 

Aren't all of ours you might ask? indeed... but sometimes I wonder why God didn't take me when he clearly had a chance, an opening..

 

I am constantly in and out of the hospital to meet doctors, appointments, scans, tests, to good and bad news...

 

Sometimes wonder if this is any way to keep going, as when I have pain I have to push my pain threshold a little bit each time.. as I can't take pain killers just yet... each time my eye feels like shutting, I have to listen to it and just shut my eyes, wherever I might be at the time...and when my body says enough is enough.. I am learning to submit to it..

 

The past 3-4 months have been very unpredictable I can't be as reliable as I used to be. I could make plans and it could all fall apart due to my unpredictable health... I am so very lucky and happy I am surrounded with those that understand this. And support it and some amazing people that are my support network..

Anger, frustration, sadness are emotions I deal with on a daily basis. and when I say deal I mean encounter them every day, almost... I used to fight with them, now am learning to use it to my advantage.. to grow my passion about things I feel very deeply about, about things I feel right about society and use it to voice my inner battles as well... I am sure I fall short; almost always.. but I am hoping to learn to convert this negative energy to bring some positive light..
 

I used to come from a very active lifestyle, where I used to pack in a fair amount of things in one day, and all of a sudden to feel restricted and held back... is a big change at the moment...

 

but what am I learning now, to enjoy the little things in life... Now, if I can't open my eyes any longer, I close them and listen.. listen to the sounds, the minor sounds I never paid attention to before, people, laughter and each and every time It makes me come alive even more...

 

I will share a coping technique that I am slowly learning too. I wake up each morning thinking "Thank you".  Thinking I can see and for those days if my eyes have done the unpredictable and want to give me limited sight I still say Thank you.  Then I step out of the house in prayer. . For others and for my health.  As the day progresses and my eyes get tired I keep pushing on

 

Only my very dear mum would know how many times I've called her up saying I can't do this anymore!!.  I give up. .am tired,  am weary. . And her response is.  You can't give up Dinu. .My God spared you for a reason.  Your time isn't up just yet. ..

Then I keep pushing on... fighting with what each moment offers. .and her constant support and love I get from family...

 

SIS survivors reading this would know exactly what I mean. 

You're eyes are so precious and when the use is limited, distorted and painful it can be life altering...

 

One day, I couldn't bear the pain anymore, I went straight back into emergency back in the hospital in bed for almost the whole day... brought back the worst memories, of where I was... the pain, the discomfort.. but it gave me so much of hope too to know where I came from and where I am at now..

 

The images below, one was from the very first time I was taken into hospital in an ambulance looking like a corpse...to where I am at now ( a few months ago, at a wedding) of course my hair and make up were done by professionals.. but I was so touched that friend so dear to me, asked me to be by her side, on her big day! with all that I have been through.. the scars, the impaired vision, the limitations that came with it..

I know most of you so kindly always say I am looking well - Thank you from the depths of my heart.. but getting there from where I was at, is purely a miracle... and guaranteed thanks to the Angels that have helped me...

 

This is why, I can wake up daily, and say Thank you even when things are so rough.. because I truly can see my blessings...

 

They say the best things in life aren't seen or heard, they are felt... I am such a big believer of this statement and a true testament to it too...

 

The power of God that never fails... each and every time I have clung on in faith knowing that this is yet another hurdle I must face...and miraculously he comes through...

 

These past few months... there have been various changes in routine, weather, outlook, perspectives and my health... but the method and practice of gratefulness has helped me so much..

 

If I see flowers bloom, a bud coming up on one of my plants, I look up in gratefulness, green grass, birds chirp, people laughing, or my eye sight slightly better than yesterday.. I am very thankful... I feel like am here for a reason.. maybe revealed further down the line...

Taking a step backwards is all a apart of this path & road we walk... sometimes we can move forward and sometimes it feels like where taking ten steps back... but like they say, if you stumble make it a part of the dance...

 

Thank you one, and all for following these blog posts as writing is one way of my inner healing and to hear back from you that it has helped you as well... is truly another thing I am very thankful and appreciative of

 

Try this technique of being grateful. I am not expert at it, am on a trial basis still. have been at it since I came out of hospital... . Try to find answers for what is interfering with my health....and get on with life to the best of my ability..

If you are going through something that is persistent, as well.. that seems to perseveringly give you pain, trouble, discomfort and something you battle with. I urge you to try the method of being thankful, even for that... I have found it has helped me get through the minutes of the day, that eventually turn to weeks and months...

Surround yourself with this positivity too, and people that bring that out in you and create that safe environment for you... it really lifts your spirits..

My quest to create awareness is still alive and I have been writing articles and hoping it will get published too.. In the meantime please spread the word... the reason I attach these pictures is for one: so you see the progress and miracles working and secondly also because it shows you how badly medication can affect you...

 

May your days seem brighter each morning, and your nights bring you inner peace and renewed strength for the next day...

 

 

 

 

Finding purpose in our journey doesn't always come easy. .. but we can most definitely find it...

A new year, a new start... The plan was to leave all the scarring that was caused in 2013 behind, for a new year...starting off on a good note... my superstitious self wanted everything to go well... and everything to go according to a plan...

But we can only plan for the next moment in life. ..everything happens at the perfect time within reason .. for us to understand now or years later. .

The year started off with a miserable day; within relationships, my outlook, my vibe, and from therein flowed negativity...

I  know, that some of you know, I have been following and supporting the journey of a seven year old boy named Oakley. who was diagnosed with the same condition I had a few months back. Steven Johnson syndrome/TENs. He was getting better, then worse and it kept fluctuating. Feeling all his pain and what he must be going through, as it all is still very raw in my mind... I was quite upset about his progress and wanted him to get well soon, come out of this miserable state soon.. the poor little boy was going through so much pain and discomfort...this story of how he was not progressing, was quite upsetting... and for a moment, made me lose hope...

A few days later, I wake up to a text message from my mum ... "A ten year old girl diagnosed with SJS and critical in Sydney, please call her mum".. my heart ached for her, and when I called her mum she burst into tears.. the assurance I gave her was " I am a survivor of SJS,  it happened to me four months back, she will come out of this". all I can say is be her strength and be there for her.. word now is, little girl is on the mend and improving each day...

When I was feeling down... on the first of the year, I rang up my mum who I speak to daily and confide in for everything... but this time I didn't say much of what was upsetting me.... the different battles that was occurring within.. but without a doubt she knew.. few days later I reached breaking point and spoke to her.. She said something quite striking to me... "Dinu, this is your purpose;  to help others going through something like you, all else in this world is secondary.."

it took a few days to sink in, and accept my reality.

There are days I battle so hard to find a purpose to why God spared me... There are days I still get on a train or walk on the street and notice strangers staring my way.. awkwardly... as my skin does look very abnormal and unnatural still.. especially my arms and body. However with summer in Australia, and anyone that has been through this ordeal will testify that we feel the heat more than ever now.. I feel hot flushes and the heat, but more over I don't see the need to cover the scars anymore or hide away from my reality, as it were... as a friend once said : Don't hide your scars they are proof that God heals..

Same goes with hair, it is a similar feeling. I feel so bare and out in the open... but I have learnt to wear it now... 

Think about a cancer survivor or someone that has been burnt ,  they go through so much we can choose to hide or choose wear their battle scars, and each scar tells a story...

Just a few days back, Cameron and I were reminiscing on the day my parents arrived to see me in hospital. How devastated they were when they saw me in an unrecognizable state and the rest of my family were quite shaken.. But I am still learning each day of the support network that surrounded me and the strength it gave us.. we are being contacted by people that have heard this story and have prayed for us.. what a beautiful thing.

One promise I make is to create awareness.. to see Oakley's story in the Sri Lankan newspaper, was definitely a start.. and this torch will be carried.. for all survivors.. it's a journey that unless you go through you will never fully understand. It's a hard one because you realize a whole lot about life.. you knock on death's door and everything could be gone in a flash. and you're given back to this world.. it is a surreal feeling..

Seeing the dawn of 2014 for me was much the same feeling. surreal. I couldn't believe I made it.. 4.5 months back I wasn't able to see. or move or feel... I was told I may never see...but God's power is beyond our measure.

When  there are days I feel down and it does happen quite often still.... I think, from my journey what I can share with you now is. Think to yourself: what is my purpose, and my passion.. each and every one of us have one..people may hurt you ..Let you down..and sometimes we get upset. .because we expect. . take a step back an don't let that affect you...keep going.. because your strength for your passion gets stronger then... realize your purpose, realize your potential.. and all else is secondary..all else the world throws at you can be your armor to get stronger

We all have hopes and dreams for our future...no doubt, and they can all become a reality if we align them with our passion... and our purpose.. and we don't have to go too far to find it ... it lies within us, the still small voice within us... that speaks... therein lies why we are placed on this earth..

I know and can feel deep within that mine is to help.. Help those in need, help and support those going through a journey similar to mine..

Sometimes, quiet time by yourself helps you realize your purpose.. and sometimes the extents to which we should go to make it happen...

While I blog mine, and in reality things can change.. I hope you find yours.. your purpose to be here...

What is your purpose. . I know there are days we all wonder. ..? .. it lies in what ignites the spark within you. I think.

This journey now nearly 5 months on.. has its challenges its 'great days' and its 'miserable days' days I feel like an alien, days I feel like I don't fit in and don't belong.. but also days am so thankful and blessed to be here.. when I hear of stories of illness... my heart goes out with true empathy now... and I am able to offer support...and it is making me realize that whatever we go through either, we shouldn't be ashamed or hide from it, neither make ourselves the victim of the situation. But, rather we should be survivors of the situation ....

Thank you for following my blog, and thank you for your encouragement I receive so genuinely.. it surely makes my walk along this journey far more lighter