Although the world is full of suffering, it is also full of overcoming it... -Helen Keller

Nearly 4.5 months on... where do things stand and how am I coping with this new found me...
 
let me tell you this much it hasn't been a walk in the park... there have been horrible days, where my mind has travelled to places it shouldn't...thinking why did I make it out alive and when I do, I realize that there is a greater purpose than I can understand now.. the messages and the lovely thoughts I have received from friends, family and strangers alike is starting to prove that to me more..

There are days when we all feel not so worthy or not so great.. and I used to have days like these even when I was normal..or I should choose my words wisely. .before my life took a turn after this condition. ...I feel a horrible sense of loss, anger, frustration.. each and every time I try to do something, that my body gives in I am tired and have to stop to take a deep breath, stop to take a step back and stop, just to be able to go on.. I used to do so much, now it has all become an effort, but pushing on and getting it done, is a great feeling too..

What has it taught me. Stop!! in general, take things easy.. if things are going too fast it is ok to say no, it is ok to take the next exit and it is ok to not be ok too.. if something is giving you bad vibes it is ok to politely decline and take your time... It is your body’s mechanism to protect you sometimes... and listening to your body is the most healthiest thing you can give it.. I didn’t initially, and my body forced me to stop...

 So with this condition and the process that comes with it, I am learning to take things slower, breathe when I feel like I can't take things anymore and hang in there and relax when the storms are getting rougher.. This is one thing that has helped me and am still learning. to do it.. visualising a huge wave coming your way.. you can choose to be in a higher place above it, watch  the waves and not let it harm you.... or you can choose to be at the same level of the storm and be attacked by it.. I am learning to visualize the initial reaction.. I must say it leads to calmer reactions... with time...

 I am also learning the kindness of strangers is like nothing I've experienced so far .. people that I have never spoken to stop to ask what happened and show such concern...As much as this world is filled with bad, evil and selfishness it is also filled with the good and kind hearted, the selfless and the kindred spirits.. I am in awe and can say, I have met a few of them  already...
 

It's that time of the year when I reflect on all things that passed me through this year.. the lessons learnt , the friendships formed, the lives that have crossed my path, the opportunities, the mistakes made, the losses and the gains...

 
One such loss I am still coming to terms with is my hair.. stepping out into the world as it were, going to work, meeting new faces, seeing old ones... it is always on my conscience that I look and feel different to others.. the mind is a powerful weapon like that it can be used to do good or the complete opposite..
 
My eyes haven’t made progress I am told, and there might be an uphill challenge ahead... but I have no doubt in my mind that healing, as in complete healing is not too far off either... it is within grasp if I have faith...

Times I wished tears rolled down my cheeks, I wish I felt that sorrow and pain come out, and it doesn’t .. it is beyond frustrating...because tears are the best part of crying, but am complaining about things I don’t have... that is replaceable and manageable without... imagine the many out there, that live without food and shelter...we should be lending a hand for their happiness..

Instead of talking about what I don’t have, I will start talking about what I do have and what I have gained in these past four months. I have been able to strengthen others that are going through something, or sharing my experience may have helped. I have received a few emails/ messages to say that the experience I went through has taught them something... that is a blessing in itself.. and like my mum said my suffering won't be a waste ; the greater purpose

I have gained loyal friends, I have seen the loyalties in others, I have seen the strength that lies in my family.. the bond they have, and the constant encouragement they are, even when am not the nicest person to be around..

I have found strength in a partner in immense ways... through his patience when I lose it, though his calmness when I cry, and through him being able to see my inside rather than beauty that is only skin deep...

 He sees my urge and need to help and in turn he is supporting the best he can– Thank you Cameron..

Friends who have gone leaps and bounds beyond their calling to help me, and carry me... I believe in angels, because of you... sometimes I wonder if you are human at all .....

This Christmas we are giving, giving back so much of what we got of this year... My life back.. my eyes back, my sense of speech, my hair and my inner strength back...

I told my mum that this year has been such a trial for me, not only with my health issues, but we have had a few things all come at once for us this year, expected and unexpected things... and it has been pretty bad year over all... and her response to me was, that I am here with them, they couldn’t have imagined what Christmas would have been otherwise... which is quite true..

I know of a little boy who is battling SJS at the moment in the UK, and I can feel exactly what he’s family is going through.. I feel for him so much and he’s battle. It is not easy... when you are burnt, can’t open your eyes and can’t breathe on your own..

 This little champion is fighting, please pray he makes it out by Christmas...

 But now I see what my mother’s words meant...  They cherish and call me daily love me while I am alive and gives me a sense of hope for tomorrow... when my chips are down...

Spending Christmas away from ones that supported me so much throughout, is going to be quite tough this year.... but am grateful to be here, even though some days I question that intention I keep telling myself the greater purpose will be revealed no doubt..

Life as we know it has changed.. my new normal, is not normal at all.. it’s a whole list of things I wish I didn’t have to do, but it’s getting my health back on track ...  and the support network I have had for that has been nothing short of extraordinary

 This season, I think we all reflect on the good and the bad... how our lives have changed... for the better and the worse... we have all encountered good and bad this year. But the lesson we learn from it is the most important..

 Losing my old self, for a new person, a new skin and learning to live in it, has been by biggest challenge in 28 years... it is not something I would wish upon any one...but the lessons I am learning through it I wouldn’t have learnt any other way either...

 What is the point if we gain everything the world has to offer materialistic or tangible, but lose our soul? I hope this season you find your purpose, you find yourself and you find it in you to give of all you have got, too.. and you believe that you have within you the strength to overcome things by the grace of God and you are always, stronger than you realize...

I must thank all of you for continuously showing us both so much support... care, concern, affection and understanding above all.. we have never seen such generosity..

I wish you all a blessed season, with some time to rest, rest for your soul, and recuperate.. and that 2014 brings you smiles...

I will keep writing again in the new year, with the challenges, the wins and the joys of now, learning to live in my new skin



 

Keep walking. .. If you see a mountain in the distance climb it anticipate the stormy weather. . But keep walking. .

Just take a moment to imagine...yourself... One day you wake up. ..and your legs don't remember how to walk. Or carry you...They have no strength. ..this may have happened to you. . Then you would know the feeling I am describing. ...if not I sincerely hope it doesn't happen to you...

The overwhelming uncertainty. .and the sense of claustrophobia. .

Here I was, well onto the road to recovery. .I tried to get out of bed after nearly two weeks on my back.. and it's so funny how your muscles forget ..my legs had lost all its strength and didn't remember how to support me..they weary ...tired and lifeless. .

This story is being told for a lesson it has been teaching me in the past few months. .ironically a lesson in walking forward with those that hold your hand and once your strong enough you march on..it was a minute handicap at the time. . but the lesson its teaching me is significant

When the physio tried to get me out of bed she said sit down, first wiggle your feet, stand up and take steps to your left and right. .and so I did. .

After which she said that should be enough let's try more tomorrow. .. but my mind said no I want to do more I want to keep walking.. during this time I had no sight but was lead by my physio and nurse. .
So I kept marching ...literally
.as she asked me to. . And walked in one spot a little bit more. .and I surprised myself at how fatigued and worn out I was. .that was a very frustrating feeling. .that motivated me.to take bigger steps each day and look forward to my daily physio treatment. .it was uphill but in hindsight it was worth it. .

Isn't it similar to life. ..Sometimes we put barriers or let society set boundaries for us . which limits us from walking. ..moving forward.  And moving on...
It limits our stride and it cages our soul..

Only if we push on, even when we may not see what the next step offers we move forward. .. that's what we have to keep doing. ..no looking back.
Only look back to remind yourself how far you've come ... then eyes forward ..

Days after, I had people walk
me take me to see the sunset through the big window.. even though my eyes couldn't bare the light the fact that I was moving gave me hope. ..

It's scary but also liberating to know that; circumstances, people,  issues,  fears can stop you.. barricade you from moving forward.  But what's better.... the fact that you have the power to say this is not how it ends and push forward. .. choose your steps wisely and the path is yours to pave..

Take that journey daily I've learnt. . Wake Up with the decision to move forward ...and your day will be brighter. .
There will be obstacles no doubt. . But jump those hurdles , cross the shaky bridges,  walk through puddles and dance in the rain..

Keep walking. .

Thank you for following my blog and for all your words of kindness and love we receive. .we are blessed more than we deserve we are thankful and to those who were with me thank you for walking forward with me...

My roller coaster ride has been full of emotions...but it's one hell of a ride, and am holding on..

How do we share the blessings bestowed upon us... how do we say Thank you ....

I never knew how to repay the many people that have blessed me with thier presence thier time , care, filling up our fridge, garden, flower pots and love...

 

Three months to be exact, my life took a turn... for the better or for the worse is questionable, in hindsight it was for the better.. For without  this experience, I wouldn't have learnt how to count my blessings, how to listen to my body, how to let go of the negative and take in the positives, to fully comprehend the love my family have for me, and to see the friends that cared about and lifted me up... I truly saw and understood the value and the meaning of the world 'angels'

 

These three months have been a whirlwind of emotions, from feeling great to feeling ugly, from feeling positive to hitting rock bottom, from being around family and friends to being my own best friend, and from having looking like I was, to a sudden change in it all...

 

The most hardest thing to grasp at the moment, I think is the sudden change in my life . The changes in my routines, the extent to what I can handle, and the chronic fatigue. But what has also come out of it is, the threshold I have for pain, the extent to which I have learnt about people, the ability to know my self worth, the ability to breathe and let things go, the fresh set of eyes to see beyond appearance and a new found appreciation for my family and circle of friends...

 

There comes a time in life I think, when we all go through something, dramatically life changing, some of us in the latter part, some of us at a younger age.. either way, it opens our eyes ...  It is a matter of choosing to see the roses amongst the thorns or the thorns amongst the roses as Abraham Lincoln said..

 

I think each decision we make, comes with an impact. a consequence, I know that some decisions I made, in my younger days made a great impact on my life, and I had to face the challenges it threw. If I had the chance to tell my teenage self something, it would be is to be strong...nothing else, not change anything. but "Be strong, you are stronger than you know"....A challenge can only break you if you let it... and looking back on the past few years, I have faced many a life changing issues, decisions I've made and lessons I have learnt, that have made me to who I am today..

 

One of them was fighting depression.. In the recent past, I spent a few months, letting the black dog plague my life.. I suffered with the decisions I made, I felt an overwhelming sense of sadness and not being able to find contentment with anything I did... but I had to take the challenge into my hands, ask God for his guidance and make some life changing alterations!, ... find my passion, find a place and head space that lets me live my passion out - daily, find my inner calmness and get to know myself a whole lot more...and learn that I can only adjust my own sails, and no one else's ... that puts a new spin on life...and do away with negativity..

 

 today, I vow never to go down that downward spiral again. I fight daily, specially when the spirits are low and when I have a look in the mirror... and see what has become of me.. when miracles are bestowed upon you and good happens, the force of bad fights with it too... it's probably the balance of the universe I am not entirely sure, but I have learnt with the good forces also come the bad.. we need identify and filter it out. ..

 

But 3 months on, the shock doesn't get any lesser... 

but one thing does, instead of counting the scars, and seeing the burns I see the blessings .. I see them lessen I seem my hair growing out, and I see my strength coming back. Some days I go backwards, but my mother by my side, daily in spirit, my family, my friends that uplift me and a partner that is extremely tolerant, with God's grace I am getting there..

 

So, how do we say Thank you to the blessings we receive a thousand fold, when the world comes crashing down... We be grateful... we learn to give back the same blessings we get, and we share another's burden and we find it in our hearts to empathize more.. The hundreds of people that have come to my aid, when I lay helpless , burnt fighting for my life. . I will forever hold you up in my hearts with utmost gratitude and respect..

And I will pour out everything in me, of my talents, my time, my love and my compassion, my faith to say Thank you..I hope reading how far a distance this journey haa s brought me is encouragement for you to keep being the blessing you are. .

 

My experience has been nothing short of an amazing roller coaster ride, this is how I can describe it best. There are days I wake up in anticipation of the thrill and the beautiful view I might see at the top, the beautiful people I see and the beauty of nature... from the top of that ride, or the climb upto it,

but there are days that I am also faced with the fall from the top and the downward journey, but as scary as it maybe and I may scream sometimes, I can also lift my hands up in the air, in relief and happiness, knowing that a God that is faithful will stick by me, and the people sitting next to me, in this ride have stuck by me and put up with my journey so far... there's no looking back now, but forward... This journey I will share with you now, from the day I started off, and an example of the journey so far, the rapid recovery, a lady that has been with me on this journey from the moment I fell ill..my mother. .who sacrifices many a things for my happiness. .. a journey from where I was...

Thank you to all of you that follow this.  My aspiration is that it helps another. .

I am learning getting burnt is not so bad after all!  It clears out all the impurities makes way for a new beginning. .

so if you are going through the fire rise up and shine bright!  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Make friends with yourself, your inner being, not your outward appearance...it's one way to get through this journey...

Yesterday was a beautiful spring day in Melbourne, the sun was shinning through the trees you could feel the warmth and it was such serenity looking out my kitchen window.. I felt a sense of summer ....

Although I wasn't feeling 100% , I thought I should put on a nice summer dress, sit outside and enjoy the beauty nature has given me... and so I did ,I got my dress out  and to my surprise it hit me again, that my body has changed so much... my skin was scarred and I can't dress for a usual summer day, in usual summer clothing, I still have to be very cautious, because my burnt skin was exposed.. I also again, realized the loss of my long hair and that brought me to tears.. I felt like I had lost a very important part of me, I very much was attached to... I never in my wildest dreams would have cut my hair off, and often have nightmares of how I look, or dreams that my hair has grown back.. this is definitely something that keeps playing in my sub conscious mind.. coming to terms with the changes my body is going through is a daily battle...I felt like I didn't recognize myself, and to be honest I didn't... I felt like I didn't look like 'all the others' and I felt like Cameron might even be ashamed to walk with me, because of how different I looked...It made me feel more aware of my skin, my hair, my eyes, my sensitivity to everything around me, and my 'image'..

But I took a step back and realized, yes I don't recognize myself? who am I turning into...? I don't recognize my outer self, but am starting to make friends with my inner being and soul... I am starting to make best friends with myself...and that is truly vital in order to get through this journey...

Often we get carried away by the 'image', the idea of how we are supposed to look, to this world, how we will be accepted, and we held down by a bondage, we are limited by what boundaries people set for us.. . There are certain, traits in life that we should live by and cultivate, good manners, kindness, love, honesty, respect, sharing and giving, support and empathy.. these basic human characteristics make us better people, not how we should look, or what our status in life is. that define us....Our ambitions, goals, dreams and paths can all be varied and different, and just because I am taking another path to reach my happiness doesn't  mean I won't get there, it just means my journey is different...

Often we tend to take first impressions or judgements on how people look straight away and this experience has taught me to shake that habit off.. to shake off passing judgement on people, period. or that don't conform to the idea of 'normal' or 'good looking'.. we are all equals in this world, be it rich or poor, famous or not... we all should have equal rights too...(which, sadly doesn't happen in this world) Finding contentment and peace with our decisions is what leads us to cultivating the habit of happiness...

I have learnt and am still learning, that we need to surround ourselves with a whole lot of positive energy.. thoughts and people.. If a certain thing worries or stresses us out, there is no point in letting it rent space in your head, or thoughts, it destroys your inner peace. Walk away from it, and give yourself the permission to do so...

Also learning to not let the idea of image and materialistic things affect us, in a way that it affects our self-esteem.

At the end of this experience I encountered yesterday,  I learnt to hold my chin up, feel comfortable within, hold my centre, go outside into our backyard and have a lovely meal with Cameron, who has accepted me at my worst. and finds and connects to the happiness I share with him, from within.... Always keep your head up they say, if not you may miss out on seeing the blessings bestowed upon you.. And blessings be it or not, for the moment am happy, who knows if it will last forever, but I will enjoy it while it lasts... and that's how it will be.. Living in the moment

Even to the rest of the world that pass judgement,  the only frame of mind, that may get us through, is this is me at the moment. and am learning to be content with "living in my new skin" literally, but skin in this context may not only be that, it can be a frame of mind, a new way of living, your journey..... Sometimes, in life we might be disfigured due to something that happened to us, we maybe born like that, it might be through our own doing, or we may feel inferior  and we may even be emotionally disfigured and scarred. .. However, we can't expect people to show us respect or love, if we don't show it to our own selves.. first.. 

Accepting the way we are and the way we look each day is not a weakness, but merely a way of embracing each day with all it's beauty..

As I learn and experience I write, so it may strengthen and help someone else, somewhere out there in the world..

One of my pictures will show you the hair that was cut off during my time in the hospital, and literally was my attachment, a temporary attachment, like my skin that peeled off, etc these are all temporary things we tend to hold on to, as a part of our image.. as a part of what completes us, and sadly some hold on to monetary compensation, as a part of their complete image too. Sometimes what we humans fail to understand is that these are all so temporary and can be removed from us in a blink of an eye, literally ( I can vouch for this). These don't and never will complete us, only we can complete ourselves...  So make friends with yourself, and your God.. learn that all these can be stripped off you and all you can be left with is your soul.... Your inner strength .. All we go to the grave with, are also these... not our bank accounts or our looks... So maintain that inner calmness, peace and happiness wherever your journey may lead you, and to all else that is negative and not good for your soul to grow, leave it behind...

I fall, I fall all the time and even more so now, but the difference is I have a different lens on now, I used to wear the lens of why me, or get sad, and upset. Now I have a new set of eyes, eyes to only see the good in whatever may come my way, skin that feels all the sensitivities around me, and also the love and comfort I receive...that negates all the bad I feel.. and a inner being that recognizes this happened to me within reason, and that reason is bigger than I can see or comprehend... and that this journey will lead me to a place I have always, always wanted to go to..

My journey to find inner strength, continues daily...Our blessings are forever flowing, we keep experiencing God's love and the love of human beings on a daily basis...Keep reading this blog to find out more about these and the battles I fight, they may help you in your journey....

For those of you who have contacted me regarding my blog, I thank you, you give me reason to keep sharing, and that is one of my greatest joys in life...


 

Each moment I am grateful and thankful, my heart runs over with more reasons to be a grateful cheerful soul...

Each and every time we open our fridge I feel so very blessed. . Because each time my food supply is nearing its end,  some beautiful soul comes with food and fills it up...each time my cup feels empty my heart feels low and I seem to be sad, my cup runs over with gratefulness from the beauty this world offers me...

 

Let me share some of these touching stories with you. .

 

I had lost touch with a friend of mine for a few years ... but, one day she had found out that I was critically ill and by this stage I was back home when she had heard of my fate, she called me up. And all she said was what do you need?. ..

From then on this 'uplifting angel' as I will call her in my blog stood with me in this journey She said she will hold my hand through it, and that gave me immense strength... She made a promise to my mum, before she left,  that she would always be there for me. ..Every journey she made to my house by train she carries a bag filled with goodies for me.. she even searched high and low for a plant that would do me good. ..I believe this person is here for me through it all because she has been through a rough patch in life. . And she feels my pain I suppose. .she inquires about me daily and is a true blessing..

I still can't fully comprehend how blessed my family and I have been to meet such extraordinary people along our journey.  People we didn't know or have never met before, met our every need. .. My dear family that surrounded me near and far praying and crying with my family. ..

 

I fondly recall all the times my family has helped people in need. .. in various ways. .and we have never ever done with the hope of getting back in return but we were blessed a thousand fold. ..

 

It's like a plant, you put seeds in the soil and nurture it with fertilizer, water, and some tender loving care, it sprouts out with beautiful harvest.... Likewise in life, you put in love, care, time with humility and genuinely you reap the benefits, but we must never do with the hope of getting in return...But even those friendships I haven't fully nurtured bloomed out for me, that shows even though there might be bad and we believe this world to be a bad place, there is hope, and solace knowing there is good out there...

  

I've learnt you have to give out to the world of your time, love,  talents and genuinely want to help..give without question. .and the universe and God, look after you in ways unimaginable. .

 

We never for once expect anything back in return. But to date, people never seem to stop amazing me. with their kindness, Cameron and I have tasted so many different cuisines, of food due to people just showering us with more and more of their love.. we have seen and visited homes filled with love and, experienced more love in our own home..

People drive far distances with boxes of food, thier concern and love. .thier prayers. .Friends my mum hasn't seen in years that came to her aid. Friends I hadn't heard or kept in touch with the that were there when my world came crashing down... ..

 

My blog today is to honor these people. . Each and every one of them. .
And when you give .. give without question give without reason... and you'll definitely be able to count your blessings each day...

Each day if we wake up positively with a thankful heart. .Our lives will be transformed. .

 

I can't be grateful enough that God has given me this challenge, and trial and that's how some may see it for me. But each and ever day I see it as my blessing, my blessing to learn so much in life, to see how blessed I am to be surrounded with love, to learn so much in such a short span of time and to find a strength I never knew existed. With all things in life, we can choose how we react. We can stand up to the challenge, be thankful and see our blessings flow in or we can sit down, feel sad and see the challenge take over us...

I thank you each and every one of you, for daily lifting me out of falling into that dark place..

 

Thank you my friends and family who have been true angels...in turn I will be there for you every step of the way...

 

My blog will soon explore further experiences I have been facing and how shedding the old skin, for a brand new, is something we should all do at some point... it adds a whole new perspective to life..

 

 

I will not allow the fears of my being, destroy the stillness of my soul...

Fear… fear of death, fear of falling ill, fear of losing someone we love, fear of not being successful or good enough, fear of change….. these are all fears that run through our minds quite often..

Today, I was plagued by the fear of side effects of Steven Johnson Syndrome… something just told me to read up in further detail as to what this condition does to you: and here is a list, for those that dare to read it:

Alopecia , Asthma
Blindness
Cataracts, Chronic Bronchitis, Chronic Cough, Chronic Fatigue Syndrome
Chronic Obstructive Pulmonary Disease (COPD), Chronic Pain, Cold Sensitivity
Corneal Ulcerations and abrasions
Depression, Dermatitis, Diabetes Mellitus
Dry eye syndrome, Esophageal Strictures
Excessive tearing due to dry eye syndrome
Fibromyalgia, Fluctuating Vision
Gastrointestinal problems
Hearing loss due to damaged cilia, Heat sensitivity, Hyper pigmentation scarring
Hypersensitivity to other medications, Hyperthyroidism, Hypothyroidism
Idiopathic Thrombocytopenia Purpura (ITP), Infertility, Irregular menstrual cycle
Irritable bowel syndrome
Joint pain
Kidney damage
Lid entropian, Lid Kertinization, Liver damage, Loss of taste buds
Low immune system, Lupus
Mouth pain sensitivity to certain foods, complaints of throat pain from carbonated drinks
Narcolepsy. Neuropathy ,Permanent loss of nail beds, Photophobia, Pores scarred shut, Post traumatic stress
Psoriasis
Rashes, Reduced Perspiration,Reflex Sympathetic Dystrophy (RSD)
Rheumatoid Arthritis
Scarring of tear ducts, Scarring of the bladder, Sepsis, Sinusitis, Sjogren ’s syndrome
Skin problems, itching and peeling, sensitivity to sun
Stomach ulcers, Swallow disorder, Symblepheron
Teeth of loss of enamel, tooth decay, gum disease and in children loss of tooth buds resulting in loss of adult teeth
Ulcerated colitis, Urethral scarring, Vaginal Stenosis, Vanishing Bile Duct Syndrome
Vasculitis
Weight loss
for more info www.sjsupport.org.au

Wow, what a list! ...it suddenly made sense to me, why I tend to feel a few of the above and haven’t fully understood the repercussions it has had on my body..

It really scared me, I will be honest, I was thinking, will I ever get through this... will I ever be able to look at bright lights again, a fireworks display, look at the sunlight... will my eyes ever look normal again? Will I ever get rid of this cough, will I ever have working tear ducts again, and my eyes ever naturally lubricate? Will my skin ever go back to my normal colour, will I stop feeling sensitive to certain tastes and food types? what will I look like in a couple of years? will I ever be able to enjoy days out in the sunshine, without the fear of getting burnt again, or feel what it is like to not be so worried about being affected by an adverse drug reaction again? will I ever get any of the above in the future? the answer to all those questions running through my head is, *taking one step at a time, and trusting the process and having faith...

Life is funny like that, it throws us such unpredictable challenges, often enough to keep us on our toes... we can either grab those challenges with both hands, embrace them and fight it, or we can run with our hands in the air frantically and not face them.

You choose? You create your own path...

Since of late I have been feeling a sense of fear, I must admit when will I ever go back to the old me, but then again I realized I don’t want the old me back... This is my new skin, my new inner being... am much stronger than I ever was. And who cares if I suffer these symptoms, I take life as it comes...we can’t live in fear or let it overcome our entire life ... it cramps our style and it turns us into unpleasant beings...

Fear of something is the worst place you can be in, and then as a result constant complaint of what you can’t do! It’s not a nice frame of mind for you, and it sure doesn’t make you a nice person to be around either.

My mother so wisely told me this morning, how she got through this when she heard the news that I had SJS/TENs and how she felt on her journey from the time she left home, getting on that plane and then facing my fate.

She said she never really read up on it, as it would have upset her more, she found out some information, but even when she saw me lay on that hospital bed, she looked beyond what she could see. She used to close her eyes when she sat next to me (she said) and would pray for me to be healed....  Because the way I looked didn’t seem promising ... Having faith  is believing in something we can’t see, and that’s what my guardian angel did for me. She believed and prayed to God.... and I am healed.. They stormed the heavens for me, and am a miracle today...My recovery was unexpected, as I was not meant to make it. So the fighter within, the family around me, and the almighty one above,  am walking today, and back to working part-time...then I think, overcoming side effects of this adverse reaction, is a walk in the park!

Walk in the park I will, with deep breaths, embracing my fears, and fighting within each day..

I am now more than ever also determined to create a conscious effort around this condition and overcoming it… I appreciate all your support and help and ideas to do this. I was made aware that in Australia there is no support network or foundation for SJS. And this will be a part of my mission, to at least create a support base for SJS survivors, and support for those families that have lost loved ones in this battle..

No doubt, we all face fear in some shape or form, don’t shun from it, as much as I fear the side effects and I am writing about it, as it is my form of healing…I am taking each day as it comes. In the end that is the only thing we have control over, the very next moment… Be brave, be bold and be courageous and you will certainly be surprised at how strong you are.. “you are always stronger than you know”… and you will have a faithful God beside you..

I will keep writing of my beautiful experiences, and the not so nice ones, that we can all turn into lessons in some way… Don’t give up, if fear holds you back! Strike it!

An honest account of the day I almost hit rock bottom. .and how I found my anchor

The sun was shinning, just like I admire it to be, the beauty of nature was at its best, spent a lovely Sunday afternoon with friends that made me laugh so much, and made me feel so alive..it was a perfect day! or so you would think?

 

 I came back home and hit rock bottom..it hit me and it hit me hard.. that am not the same person anymore, I look different, I see differently, I feel different and am not my old self..

 

It hit me all of a sudden, it was like a huge wave came over me and I was drowning... I cried uncontrollably.... it also hit me that I had no more tears rolling down my face.. and every bit of crying and sadness just kept getting deeper.... I felt my hair and felt nothing there, I looked at my skin and felt so different...I placed blame on myself, the situations that led to all of this condition, and even felt like I wished I had never made it out alive!.. in those critical few days..

 

But hold off! I thought to myself I've had my moment, but I will fall down deeper and deeper if I make myself the victim of this situation, and felt sorry for myself, one of the worst emotions you can harvest in your body "self-pity" ..... I need to get back on track.. I need to stand up. my legs seemed weary, my heart heavy my mind sad but I pictured myself standing up, amongst being drowned.. finding my anchor... this is the time I felt the presence of people that had passed..! especially the love and warmth of my two grandfather's who gave me much to think about... and live by...

 I felt the presence of a cat Ollie l, we lost recently (some might think this to be quite immature) a cat!? but if you're an animal lover you would connect with what I am saying, and know exactly what I mean.. it was his presence his company.. 

......and it's strange how on certain days I feel the people that have passed from this journey shinning down on me... It was like a boost to my spirit...

 

Initially I felt myself falling into that deep dark hole, the hole I have visited before and is not a nice place to be.. I felt so much anger again within. anger towards many things.. and most of all anger for this happening to me.. I see people 'normal' laughing smiling and looking normal..but then again what is normal?

 

 I am beginning to learn that the word 'normal' has a new sense of meaning. normalcy could be anything or any place that is the root cause of your happiness and inner peace.. you have to create it and you have to find it. we are not to judge what another's sense of normal is...or looks like outwardly. .

 

a lesson well learnt yesterday.. That if we feel sad and down about something, allow yourself to feel it, it's human to feel sad and down, but immediately pick yourself up.. don't feel sorry for yourself.. and make yourself the victim of a situation... just when this thought kept playing in my mind I turned the television on, to a see a man with no limbs who is an inspirational dad, and not a word of complaint from this amazing person...

 

He suffered and was told he would never make it...and he was the 1% that did make it. Hearing that story of how he's family was given the bad news that he may not make it. brought back emotions and memories of what my family would have gone through when they were told the same news... I was talking to someone else that had survived a near death situation.. and people like us have a new found appreciation for life... we learn that self pity will only dig us a hole maybe even our own grave and take us to the deepest darkest depths, where finding a glimpse of light can be an uphill battle..

But seeing this amazing man that had no limbs and was surviving, I thought to myself what am I complaining about...

 

My life is perfect, I am blessed each day beyond measure... I have eyes that can see and is improving and a heart that has found the need to understand the finer simpler things in life...I have family that will give anything to see me well, a partner that has proved he will be there for me for the beauty I can nurture within, nothing outward or superficial, and friends that have given me so much love...

 

Once, years ago when I was about to get my first tattoo done I asked my brother what I should get  done, and he gave it a little thought and said get four stars on your back, to represent each member of your family and to always serve as a reminder that we always have your back! how true to this, just like the tattoo never faded away that promise didn't either..

 

Through the burns the hurt and the self transformation, and more so yesterday I felt the presence of my family, those who are still on this journey, and who have passed... I went out this morning as my heart still carried a little sense of sadness for how I reacted, I stepped out in the garden I felt my world transform there, I was in touch with nature... in touch with the plants my mum had laid down there for us to enjoy...

 

The wind that sent chills through me, and washed away my sense of sadness and with it brought me love and a new way of looking at a situation.. the warmth and sense of a God that is so faithful and renews his blessings each morning...with brand new mercies for us...

 

If you are reading this and are going through a situation that is dragging you down, weighing your heart, feel for it and move on don't stay there feeling sorry for yourself or worse yet making yourself the victim of the situation..... it's not worth digging your own hole to depression, I did it once... it led me to a lot of pain..

 

Enjoy and revel in nature, sometimes walking bear foot in a garden gets you in touch with nature, the sights and sounds soothe your soul and awaken your senses to get in touch with simple things in life... Money can buy a lot of things, but definitely not your inner happiness or peace or great friendships.... and sometime people that are so greedy tend to forget that their greed makes them lose sight of the things money can't buy.... go to nature where it's free, calm and rejuvenating and sense how you find solace in the darkest hours and find the fighter in you to fight it, when you fall...

 

Thank you to all my inspirations, you know how each and everyone one of you have helped me, and yesterday when I fell down and hard, I realized the many people that have carried me, and how sad they would be , if I remained a fallen soldier... Be the inspiration you are to people daily, for those of you who have helped me a long this journey, that once was a battlefield, but now slowly becoming my fields of gold..

 

 

Keep following this blog to find out how I am learning that taking rest is not a sign of weakness but a sign of strength to listen to your body... 'rest and relaxation' something I never indulged in because I felt bad....a story about an amazing 'angel' that is helping me out in this daily battle...only because she has been through something life changing, and is stretching out to help.

..and I thank you to those that write to me about my blog and how it's helped you.  Your definitely my inspiration to keep writing as I learn. .my blog is a true and real account of how I feel and my experiences on this journey.  With one aim to help and restore things we already knew existed within us

 

 

 

 

 

Facing what challenges our inner being, with bravery is the best way forward

Sometimes.. we need to face our challenges head on...and that's the best way to overcome it...

Seeing my mum walk out our front door with tears filled in her eyes, emptiness in our hearts and the thought of not knowing when I will see her again....was such a battle from within...I have been doing this for 10 years where I say good bye to them and it doesn't get easier each time... but this time in particular, was very different and  much harder because I know the journey we walked together...

She took me from a person that was dying (inside and out) to a fighting soldier who has come out much stronger and braver... she really saw me through that whole journey. Without a word of complaint or blame, it was never a chore to her, but she did it with all her energy and kept saying she wouldn't have it any other way..

All of that unconditional love and care I had to let go, in a matter of minutes.. but let me share with you how I found dealing with this parting much less disheartening and painful..

The bond we created in these two months is so strong, it's a bond like sisters or that of best friends... we cried together and she made me laugh, she showered Cameron and I with so much love and looked after us both with so much of concern... Even for Cameron to see her go proved quite hard as we had some great times.. cooking, gardening, dining, laughing , sharing fond and sad stories and strengthening our bonds, daily...it was a great chance for Cameron to also get to know my family on another level.. and I could see the joy and laughter beaming from his face...

Today when I look back sitting in this empty house I am so grateful for our time together..

When she walked out that door, I honestly felt like I was torn, my pillar that was holing me together was leaving and she definitely took a part of me with her, and she left a good part of her with me too..

Normally when I say my goodbye's to family I would run away from the house, shut the door to the room they occupied and stay away from the house so I don't have to face or feel the emptiness and loneliness...

This time around, I did the complete opposite... When she left for the airport, I stayed home... went into her room felt her presence and that she was gone, felt her every touch and love, and know the house was still filled with such warmth and genuine concern...I cried ... and cried and cried some more... walked into each room and the memories came flooding back, even the garden and the plants she put in there for us, the flowers she left in each room for us and her special cooking she left behind I immersed myself in all those memories...and it helped 'deal' with the pain...

This morning was the worst of them all. I missed her cuddles every morning, and the warm cup of milk and head massage I used to get, along with her daily prayers and strength.. but the beautiful care she left with me, I carried it on this morning, and it reminded me of her sitting right next to me... Facing the fact that she was not here, helped me face one of my worst fears... the fear of 'loss' and of 'sadness'..and emptiness. .

I am sure we all face so many fears in life, but facing it head on accepting that this is how you feel at the moment and letting yourself feel it helps deal with the emotion then and there, rather than build up and explode, any other way..

Even if you have lost a loved one, sometimes we tend to hide away from it and not accept it, or run away from it..

The old me, would have run away from a problem or an emotion..without dealing with it I would have run away in fear .. but through this am shedding the old and making way for the new, and would like to share what I learnt just in these few days, that sometimes in life we should dare to face our fears head on, fight it, battle with it, feel it and move on..

It does your inner self a world of good I have found.. I am still dealing with the new found silence in the house and not having my mum around....I miss her so very much... but I dealt and accepted that she was here, when I needed her the most, she did beyond her call as her mother and now she has to return back to her life and me back to mine..and we can chat ever day..just like we always did..

The scariest things in life can be overcome if we have faith... face our challenges with bravery and cloth ourselves with our faith in God, a genuine heart and the ability to feel each emotion good or bad.. and move on from it...feeling the bad emotions is something I suppose we all run away from or avoid feeling. I am guilty of sweeping the bad emotions under the carpet, letting it build up and exploding!

So be it a loss a heartache, a worry, hurt deal with it or deal with the person or emotion causing it.. it helps avoid a whole lot of toxins getting into our body's. When we live in a world that is consumed by being fake about thier looks, or appearances outwardly and back stabbing attitudes.  It takes courage to find within that tool to deal with whatever it is that bothers you. Head on.. 

This is the new me, and am still learning to deal with my sadness and emptiness, and overcoming it with feeling the moment, and then moving on to the good times.. Mum says " life is filled with the mountains and the valley's, we must learn to accept them both and deal with them both the same"..

My reality is slowly but surely sinking in life and everything else is going back to how things were, before I became ill . physically am not quite there yet. .. but I have faith that will also come back...

 the lessons I have learnt from it, is making me see life so differently...in a new light.. with new hope.. Sometimes, people that suffer from life threatening conditions have a whole new perspective and a new lens on life.. the lens of appreciation for every little thing, and situation and a new found faith in themselves, and their God and new found respect for family and friends that surround them

I have received so much concern from people just to see how I am holding up, after mum has gone back.. and if you are reading this , Thank you, so very special for thinking of us and the concern and care all of you have shown us be it if I know you directly or through a friend or family, I am still in awe and have the utmost respect for you...

It's little gestures, like this that make a huge difference in our lives and definitely what saw me and my family through a rough patch..such amazing souls within. .

Keep following this blog, with more lessons of learning to live in my new skin, the battles I still fight from within, the amazing healing stories and more extraordinary people that have made my journey lighter...