My Apologies...

... For I have neglected the blog!

Life has a way of letting things slip through your fingers. In thus case, I had to let it slip. Had to prioritise. Being maidless with two kids and a not-so-great spine is time consuming. Although I enjoy every minute of it, I am frustrated that I cannot allocate much time to this cause that is so dear to my heart.

For anyone who still reads the blog and would like to get in touch, please feel free to email me. God willing, i still check my email at least once a week. I will try to get back to you as soon as I am able to.

And for anyone who is curious, just to update, I am relatively pain-free everyday, and no, i have stopped going to Spinal Inc. due to time constraint.. But living a healthy lifestyle has helped me in leading a nearly veryyy normal life, praise Almighty.

Simple Things To Do For Your Daily Pains

Growing Pains? Daily Pains.

Most people have growing pains. Scoliosis patients have daily pains.

Frankly, I cannot recall the last time I felt utterly pain-free. If you asked me, probably 20-ought years ago during my pre-teen years when the curves were not progressing at an obviously alarming rate.

Fast forward 21 years (since first diagnosed), I have to say that there is indeed pain, some sort of pain, at some spot, or a variety of spots, everyday. Weirdly enough, the pain-spots or pain-areas can be different each day. On Monday it could be my shoulder blades. On Tuesday it could be the upper curve. Wednesday it could be the rib hump that was removed during the first surgery. Thursday it could be my formerly-frozen shoulder with nerve pains all the way down my arm to the tips of my fingers. Friday it could be the coccyx area. Saturday the lower curve. Sunday the formerly-compressed nerve on the lumbar area, pain tingling all the way down the formerly-temporarily-paralyzed left leg.

Some day the pain could be so mild, I can go on all day gym-ing, baking, carting kids left right center, and then to bed humming to myself. Other days the pain makes the body feel a hundred years old, the mind fogs up and only cross words can come out from my mouth so I keep it shut and quiet throughout the door as much as I can.

I am very very sure that most Scoliosis patients with mildly-moderate to severe curves experience this. The good days, and the bad days.

In the support groups I see young girls writing painful words; words of pain, words of loneliness, words of worry. Their words effect me more than I expect sometimes. I suppose only those who go through such pain would really understand the various pains Scoliosis can bring to the human body. Aches, throbs, tingles, shortness of breath, numbness, soreness.. well, to name a few.

The doctor (Dr. M) at Spinal Inc. said something that hit me, made me realize that I had been living my life wrongly all these years.

RIGIDITY EQUALS PAIN.

My friends, this is true, whether you realize it or not. Or whether you want to admit it or not. This does hold true.

I remember winter months in Melbourne, busy with assignments, my whole back tight from a whole day in front of the computer, bent over books and materials. The whole back area was screaming in pain and the agony was vivid as I rolled my shoulder blades to rid of the 'kinks' I felt. A *'kruk kruk' sound like bones cracking and snapping against each other making me wince and wondering how long it can go on this way. (*Credit to Joveen C from the support group for her 'kruk kruk' description)

Rigidity is not good.

So that is the most valuable lesson I'd taken away from Spinal Inc. Daily schedule leaves me with little free time and I have not been to Spinal Inc. for my treatments in months, but amazingly enough, I feel great most days despite the pain. The good days are really good. The bad days are not that bad either anymore. (Alhamdulillah)

Here's the key: the key to manage your daily pain is to keep your back muscles relaxed, not rigid.

Every patient is different, so I am not here to give you specific 'instructions' on how to relax (and strengthen!) your back muscles. But I will share my experience here, hopefully others can find it useful and eventually figure out what works best for yourselves.

Relax AND strengthen the back muscles? Sounds like an oxymoron doesn't it. If you're wondering why I think relaxing and strengthening go and it hand, I personally believe it has something to do with blood flow and muscle strength. You see, it is important to move (i.e. exercise!) and get blood flowing to your back area. Once blood starts flowing there, your muscles will feel 'warmed' up and you won't feel so rigid anymore. And eventually, once your muscles are used to being 'exercised', it increases in strength and so everyday you can do a bit more, you can feel a bit better, you can be a bit better and so your strength and quality of life will increase.

Is this even scientifically proven? No, I apologize, I am only speaking out of personal experience.

Exercise saved me from rigidity and pain. Please, give it a chance and maybe it will help you too.

Exercise is such a taboo word, really, people have images of vigorously sweating people in work-out clothes when I mention exercise, no doubt. But what I mean is exercise can be as simple as putting on your slippers, and simply taking a stroll around the block for twenty minutes. Move your hand in motion, heck, wave it gently around if you want to a'la aunties-walking-in-the-park if it makes the blood flow to your back better. Swimming is another misconception too.. swimming doesn't have to mean swimming laps. Float on your back, gently move your arms around like you're a water-angel (like snow-angels, you know? Hehe).. stay in that water and just have fun for twenty minutes.. do this three to four times a week. Just some simple exercises that MOVES the back area.. and you will be amazed at home much better you'll feel in a week or two. And in a few months, you'll feel so much better about yourself that the future will seem somewhat better.. not so much filled with pain anymore!

And when you're working in front of the computer and the back starts feeling tight and rigid, and you feel the pain coming... get up for a while and move around the house. Do stretches. Bake a cake. Cook up a stirfry. Look up the ceilings while you walk around the house to look for cobwebs. Whatever that simply gets you moving that body and those back muscles for at least ten to fifteen minutes.

The trick is to train your back muscles to be relaxed. When it's relaxed, the pain will lessen.

Give it a try, really :)

Down with muscle rigidity!

Swimming with the five year old who can swim even faster than I can. The water's the only place I can hold my babies without feeling strain on my back (due to the water buoyancy).

Reality Check

I was in Ikano last week fetching the older boy from his art class. There was a petite woman (and I mean veryyy small sized.. in height and width) carrying a baby, with another little girl at her side, a man and another woman. They walked together in  a group, it looked like a usual family outing. I was fiddling around with my bag when the elevator came, and we all walked in. She was ahead of me and that's when I noticed it.

Her hump. Humps, to be exact. An upper hump caused by a thoracic curve. A lower hump caused by a lumbar curve. Such obvious humps. Humps that were so distorted and obvious, I could practically feel her pain.

I had a hump ten years ago pre-surgery. They removed it and until today I have little to no sensation on the surface of that area. You can poke me, tickle me, push me there on that spot. If you do that, I'd feel like you''re attempting to poke me through a piece of wood. Meaning.. it feels like there is a thick barrier between your touch, and my skin.

But my hump was probably only 50% of this lady's hump. I couldn't help but glance. Other people in the lift stared. I'm glad to say I didn't. Having people in school stare at my hump is reason enough for me to never stare at other people's unusualness.

She perched her baby on her waist, at the hip-joint, just like any mummy would do. She chattered on with her lady friend. Her husband was messaging someone on his mobile. Her kids were beautiful, smiley and bright. She didn't give one hoot to the staring eyes.

I felt humbled, and ashamed.

Tonight my upper back hurts. It is sore, stiff and throbs a dull rhythm on my brain, telling me to do something for the pain. Husband has set up my inversion table and I'll be doing the inversion right after this. After that I plan to do some Scroth breathing exercises. InsyaAllah I will go to sleep better.

Usually I'd give a sigh or two. I don't sigh or complain to other people, I sigh to myself, in the privacy of my home. Ever since I was 12, I do not remember one day of which the spine has been pain-free. That is 21 years of discomfort. But tonight I do not sigh. I keep thinking about the courageous lady in white, walking like she carries a streak of pride with her throughout the mall, ignoring people's curious eyes. What discomfort and pain she must go through every single day.

To the lady I saw, thank you for making me humble. For making me remember that there are many others who have more pain than me, but live on gracefully anyway.

May God bless you always sister!

Swimming For Scoliosis

Note: All opinions are entirely based on personal opinion and experience.

Back when I was 12 years old, in 1991, the doctors in UH (now known as PPUM) told me I should go swimming for my scoliosis. There was no Internet; no google, no facebook, no support group. You take what your doctors tell you as literally Godsend and do as you are told.

Mum had sent me for swimming classes since I was little. But she continued to send me for swimming classes in Bangsar until I was fifteen. A few of my close friends from school came along and we'd have fun in the water for a few hours every week. Nobody else I knew had Scoliosis, so we didn't do anything back-specific. We just swam.

About three weeks ago I had a trial class for Aqua Aerobics at The Club, Bukit Utama (near Bandar Utama). It was nothing short of amazing! The movements really "working" your upper and lower back. And don't get me started on how amazing it felt on the core. It is important to have a strong core. I intend to start regular Aqua Aerobics classes this July. The review and update on this will be for another entry.

For now, lets talk about swimming.

Going for the Aqualogix class (this is what the classes are called) reminded me of how comfortable and relaxed water has always made me feel. So I decided to incorporate swimming into my health ritual. And so my weekly health ritual would be something like this:

- Gym; cardio and strengthening exercises (including weights), three times a week (1.5 to 2.5 hours each time).
- Physiotherapy at Spinal Inc.; twice a week (two hours each time).
- Swimming; twice a week (one to two hours each time).

It has been a few weeks now and swimming has done wonders to the good ol' spine. It has helped me manage my pain better (most days are pain-free now, praise Allah!), and it has helped me strengthen my lung capacity as well. I do cardio a lot at the gym, so I was amazed at how out of breath I got after my first swimming session in years. The breathing technique we use as we swim really helps build up overall stamina, especially where lung capacity is concern.


And the buoyancy of the water! It makes a person with pain feel weightless, free and oh-so-relaxed and graceful :)


So what do you guys think? All scolis should try the water, swim or not! Walking in the water is an exercise too and oh my, what effort it takes! Have you tried walking for significant distances in the water..? The first time I tried it in the Aqualogix class (and that's why Aqua aerobics is suitable even for non-swimmers).. I couldn't believe how out of shape I felt. 


Do you guys have any water-related tips to share? :) 

With my water babies.

The Weight Issue

To be perfectly honest, I have never been the thin girl on the block. Well I was never fat, but noone would call me thin, seriously. I was average at the most. My genetics seem to be the bane of my existence. I'm very hourglass shape, though not from the sexy genre. Putting it bluntly; heavy chested, heavy bottomed. Yup, you'll end up with an hourglass figure that ain't necessarily a good thing.

Things changed when I was 18. With school finished, and driving license earned, walking was not a norm any longer. With no extra curriculum activities, and a decent allowance, eating out became the norm. By the time I entered university, I was slightly over weighed and not liking it. I incorporated swimming into my daily routine, but did not manage to shake the extra weight off.

Until I had my first surgery in 2002, and out of sheer will power lost 16 kilos while doing my postgrad in Australia.

After getting married, although I regained a few kilos, I managed to keep my weight down through diet and exercise. After having my first son, I had difficulties losing the weight once again. Walking didn't seem to help, and it was even harder to lose weight once I started having severe pain from the broken implant.

After the second surgery, the weight was still a struggle to manage as I entered my 30s and metabolism took a different turn.

I forced myself to pay for a personal trainer and trained like mad. Controlling my diet this time around was harder because with a kid around, the mum always becomes the household garbage disposal (finishing leftover and whatnot!).

I then lost 8 kilos. Then I conceived and gave birth again.

And now the cycle has started again. Here I am, at the same weight I was at after my first son, and struggling to lose it once again.

The difference now is that I dare not go for personal training again because there is no medically certified trainer at my gym at the moment. My previous trainer had moved to another establishment and is no longer an option. I dare not choose another trainer for fear that I might be putting my spine in jeopardy if bad training was given. Spinal Inc. has also discouraged me from pursuing personal training with an uncertified trainer who might cause the curves to worsen further.

So now I am at my wit's end.

I still go to the gym three times a week at least, but with a baby at home, I cannot work out as long as I would like to.

And why do I bother talking about the weight issue?

Because, here's the thing..

I believe being overweight is bad for your spine. Your spine strains to carry the weight. And any extra strain would and could cause discomfort or pain. And as this holds true for people that do not even have scoliosis, imagine what it could possibly do to us, those with scoliosis.

The bottom line is, I believe people with Scoliosis should strive to keep their weight down, at a healthy range.

Wish me luck!

Facebook Group: Malaysians With Scoliosis

Indeed through this blog I've made numerous friends from all over the world. I can't begin to describe how much it means when someone writes and shares their experiences with me.

I've finally started a group on Facebook. Look it up; it's called Malaysians With Scoliosis. As with everything in my life, it will be another work-in-progress. Isn't everything in life a work in progress, really.

My back aches tonight due to lack of exercise (haven't been to the gym in three days due to work commitments and a bout of food poisoning).. I am tired and hoping that I might have some energy left to do the physio for the night.. and was wishing I knew someone (or could talk to someone) who knew exactly what I was feeling and going through.

May this group be the beginning of plenty of good things. God willing.

If you are like me, constantly looking and hoping for a better understanding of what you go through everyday, join us.

After a Month at Spinal Inc.

I adore my therapists there. In such a short time they have become my friends and confidante. The upside of going to therapy when you're older and no longer a teenager is that you get to be friends with your therapists. And it makes for a much comfortable treatment environment.

Each session the patients come in on their own time, each person would do his/her own exercises, and therapists would go around checking on your exercises. Whether you're doing them correctly or not. They'll correct you and give you tips to improve your exercises. They'll regularly ask how you're feeling, and they never forget to check on you to ensure you're doing the routines correctly.

The Scroth Method involves a lot of breathing exercises. I think these stuff are harder to learn and adapt to when you're learning them at an old-er age. Like me.

The teenagers and little children who go there do their exercises so wonderfully well. I cannot help smiling and feeling warm inside watching the young girls there speeding through their exercises while I do them at a snail's pace. I am determine to do them correctly as well. The thing that is different is all my years growing up with this Scoliosis.. I see it from their viewpoint. I can see it in their eyes. I see their dread, their unhappiness, their gladness when the exercises work out well, their boredom, their rebellion, their denial. These wonderful young people with their exceptional ability to adapt and learn at lightning speed, but not necessarily willing to fully accept the evil necessity of committing themselves to this medical condition that we have.

But already in each of them I see the spirit that will carry them through the rest of their lives with Scoliosis. Some of them will get better. Some of them will get worse. All of them will one day eventually realise that they can embrace this and live with it.

Due to work and family commitments, I can only attend the sessions twice a week. Other days I try to do the exercises at home, but sometimes there are days when I had to skip them. Am hoping I will eventually learn to fit the exercises into our daily routine sooner than later.

It is too soon to say anything but one thing I can say is that the pain has definitely improved :)

Alhamdulillah!

A Lifetime Commitment..

..is what I've given this Scoliosis of mine, and will continue to do so.

The curves have regressed, yes. After the posterior fusion surgery in October 2002, the curves were approximately 20 to 30 degrees each, corrected from its origin of between 90-100 degrees. Prior to surgery my lower curve reached approximately 98 degrees if I recall correctly.

The latest xrays show that the curves have increased (or in a more "correct" medical term.. it has regressed/returned to ...) to between 40-50 degrees. Both upper and lower curve.

No wonder I've had severe pain and aches since carrying and giving birth to Ilan.

Indeed the reality is that I had always known the curves are regressing. Denial is a silly, but sometimes unavoidable thing.

Sometimes I get discouraged, dealing with this Scoliosis for the past 20 years has been challenging, emotionally and physically. But when I look at many many others who are in worse situations, I thank God for this life that I have with its many blessings.

Onward my friends, it's onward.This is the only way to deal with this. Never look backwards.

So I will continue to do what I can for myself and my Scoliosis today. No use thinking about what could have, should have and would have.

This Scroth Method. I pray it works.

The Next Step: Spinal Inc., Mont Kiara.

Here's what has been going on..

Since the birth of the second baby, I've had pain on my upper spine and the fear that my curves are regressing have returned to plague me.

So today I had my first consultation with Spinal Inc., in Mont Kiara. The physio doctor I saw was very sympathetic, helpful, generous with advice and information, and I look forward to working on the good ol' spine with her and her staff.

Goodbye to my surgeons? Nope, we will cross the bridge only if we get there. Which I hope we won't. Two surgeries are enough for now. God willing.

Will keep my progress updated.

Having Kids, With Scoliosis

I am now a proud mother of two boys, Alhamdulillah.

I am also still a person with scoliosis, although "corrected", I still have discomfort and slight pains on a daily basis. I have a chubby baby whom I cannot carry as often as I would like to, and although I invest heavily in gadgets that help lighten the burden of caring for two boys, i still worry and "fear" pain on a daily basis. And I still worry when I think about getting old with this Scoliosis.

There, I've bared my soul here in this entry :)

Our second baby, Ilan, was born on 26 August 2011. Weighing 3.11 kilos, through a c-section. There were contractions happening as early as when I was 23 weeks along, so when Ilan was finally taken out, I was told that my womb had grown so thin, it is advised for me ot to have another baby for at least three years. But Alhamdulillah, everything turned out fine.

Ilan is now 6 kilos and even at his weight now, I can feel a strain on my back after carrying im for long periods of time. A few times when I fell asleep in the "wrong" positions after a night of breastfeeding, the old corrected rib hump throbbed, and tingled, like someone was lightly poking needles on it. A few times when that happened, I dragged myself to the gym and walked, or cycled, or cross-trained. Then after the usual back-strengthening exercises on the machines and also with free weights, the back and spine feels human again.

Motherhood is not easy, thus I've grown a newfound respect for my mother and all mothers out there, since I had my first baby years ago. But undeniably, motherhood with Scoliosis.. has its own unique challenges.

Alas, the last thing we should beis discouraged! Scoliosis is and should not be an excuse for us to not have a "normal" life :)

When I was 15, I vowed never to get married because of the boys in school who teased me for being "cacat", because I looked odd with the bulky body braces on! When I was 23, my now-husband was already in my life and went through every step of recovery with me after that first surgery. I had vowed then to never have children, because noone should have to go through the kind of pain I experienced after the surgery! What if my kids get scoliosis....? No, no.

So what am I doing in a marriage, with kids now??

Well call me selfish. I have Scoliosis and still want to live a normal life. My boys are the best thing that have ever happened to me :)

So whatever your chosen path is, dear friends, do not fear to take it! Be it marriage, or career, or any life-changing frightening prospect.. Take it.

An Excusable Hiatus..?

I've neglected this blog once again for far too long. However... (ehem... yes I do feel guilty even as I am saying this!).. I do have a perfectly good reason this time.

Today I am exactly 33 weeks and 5 days pregnant with our second baby.

Yes we are ecstatic, praise Allah :)

This pregnancy hasn't been as easy as the first one (back in 2006 when I was in my 20s), and I do think that age is indeed a factor. Although this time around the good ol' spine was in good shape when the pregnancy began, it hasn't been easy on the spine since then.

I've tried to keep my weight down (as weight gain isn't good for the spine) through a regular exercise regime involving the gym and outside activities, but have still gained about 10 kilos so far. As the pregnancy progresses, my lower back experiences more pain and my upper back gets stiff easily.. and it isn't very easy to motivate oneself to get out of bed and get to the gym when the body feels so heavy!

But dear friends, the reality is that if we have scoliosis, we cannot afford to be lazy.

So here I am, nearly 9 months pregnant and still exercising 3 to 4 times a week, or as often as I can manage.

InsyaAllah, I will post some entries on how a scoliosis patient can continue exercising while being pregnant soon, hopefully before I give birth :)

The Pain in The Neck

The trouble with living with Scoliosis is that oftentimes you think you've grown to the physical discomfort and pain that comes with having Scoliosis. Then sometimes life throws you a curve ball which tests your limitations, patience and faith.

The truth is not very spectacular, it's just a pain to deal with *ironic smile* :)

Earlier this week I woke up with severe pain in my neck (yes this does sound really odd, but it's true), which has not ceased since then. Malays would call it "seliuh bantal"; which basically means you'd sprained your neck while sleeping on your pillow. In other words; sprain your neck in your sleep. The trouble about having a sprained neck with this Scoliosis of mine is that it causes a whole lot of other pains. Not only the neck region is throbbing (spasming), my upper curve (i.e. the upper spine.. recall that my spine has the S-curve) as well as the rib hump they'd removed and repaired in the spinal fusion back in 2002 are hurting as well.

And here I thought I'd taken all the precautions to avoid any spine-related injuries! I use proper support pillows, sleep in proper sleeping positions (never on my stomach, never in positions that do not align the spine properly) and on top of that, I exercise the back regularly and try to get sufficient rest every night for the sake of the spine. And still somehow during the early hours of that fated night, I managed to give my neck a really bad sprain.

I went to an acupuncturist in Taman Megah here in Petaling Jaya and Alhamdulillah, the neck can move during the day. But the nights are still utter agony. This being the worst sprain I've had so far, I suppose it'll take time to heal.

If you think I'm moaning about it, well maybe you're right. But the truth is I just want to write about this as a reminder to all of us with Scoliosis.

It's so important for us to take precautions to avoid injuries. To never take for granted about the littlest thing in life, like sleeping positions or daily activities (like lifting a heavy item) that can hurt the spine. Because any injuries, combined with this existing condition that we have (Scoliosis) can bring severe pain and discomfort in our daily lives.

So take care of yourselves, dear friends. Live life, live strong, but live it carefully. May God be with you!

Common Questions from Newly-Discovered Scoliosis Patients

Many people with Scoliosis email me through this blog and I must say, thank you so much for your emails and thank you for reaching out to a fellow friend with Scoliosis. For many of us, the questions that plague us are similar, although we may not know that.

Here I will try to lay out some questions that are most common, usually coming from those who have just discovered about their condition, or from those who know that they have Scoliosis but have not received treatments of any form for their condition.

Q: Where do I go to check my Scoliosis? Who do I see?

A: It is most usual and advisable for a Scoliosis patient to see a medical doctor, a specialist who specialises in spine. There are many orthopedic specialists out there, but I personally would go for a spinal specialist right away because they have sub-specialised in treating the spinal cord. There are many spinal specialists now in Malaysia, be it in government or private hospitals. If you choose a private hospital, you simply call in and set an appointment. I am not too sure about government hospitals, but nowadays I suspect you could do the same (call in and inquire about making an appointment with a spinal specialist).

You will need a referral letter from any doctor (just go to any clinic and tell the doctor that you have Scoliosis, and you need a "referral letter" from the doctor which specifies that you have Scoliosis and need to be checked by a specialist). This referral letter will be given to the specialist on the day of your appointment (you could make several copies of the letter if you choose to go to several different specialists to get more than one specialist' opinion).

Q: What happens during the first hospital check-up?

A: If it is your first check-up, they will send you to do x-rays on your spine. From the x-rays, the specialist will then tell you the condition and severity of your curve (the shape of your curve, single curve or double, non-severe, moderate, severe, etc.) and the degree(s) of your curve(s).

Q: What are the treatment options available?

A: The specialist will explain to you the options available to you (physiotherapy, bracing, surgery, etc.). He/She will recommend the treatment options for your specific condition.

But as a patient please note that there are other treatment options available as well. Many private clinics are available nowadays that provide physiotherapy, chiropractor services, acupuncture, and so on. Here's one example of such clinic. There are a few others out there, so please do your research. My knowledge of these treatments and the clinics available out there is limited, but for those who chose alternative treatments other than those suggested by your spinal specialist, please do intensive research before deciding on the course of action suitable for you.

Q: Will I need to go to surgery?

A: Again, this depends on many factors. It depends on the severity or seriousness of your curves, it also depends on your financial abilities, personal preference, and so on. For some, surgery might be the only solution (as I believe it was my only solution because my upper curve had exceeded 100 degrees back then).. but it may not be necessary if your curves are not severe, and if your spine does not get in the way of normal day-to-day living. Again this is my personal opinion on the matter. Even if your specialist suggests for you to do a surgery, noone can force you to take this step unless you yourself choose to do so.

Q: Will I feel better if I have a surgery?

A: No one will know for sure! Surgery is not a miraculous solution, it is not the end of the road that will heal all pain and problems. In my situation, surgery was necessary, but remember.. living with Scoliosis is a life-long condition. Choose a treatment option that suits you and your condition.

Q: Should I go for physiotherapy or bracing?

A: This is again up to your doctor, and you. The situation differs for every patient. Do not give up and keep trying. For some, physio and bracing work well. For some, surgery may be the answer. Some might even choose to forgo all these formal treatments provided at the hospital and opt for alternative treatments (chiropractor, acpuncture, etc.). I did physio and bracing for two years in my teenage years and it did not help me much as my curves were very progressive. But I know some people for whom physio has worked wonders in decreasing their pain and improving their daily lives. I also know of a few others for whom bracing worked well in containing and improving their curves. So in my opinion, it is really a matter of trial and error... and a lot of faith and luck as well.

Q: What if I do not get my Scoliosis treated at all?

A: Yes you can choose to do so. But in reality, if you have Scoliosis, you cannot run from the fact that it is a lifelong condition that you have to live with forever. At some point of your life you may feel discomfort or pain while doing daily activities. When or if this occurs, you must realise that it is necessary to take actions. Even the simplest action like exercising more to ease your daily pain is a good action!

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So there you have it.. the most common questions that I get asked about by those who have just discovered that they have Scoliosis, and those who have not had any treatments for their Scoliosis.

Of Little Achievements

This year has been full of unexpected things.

What I mean is.. things that I didn't expect to be able to do as a person with scoliosis (and having had two surgeries already)... have materialised, much thanks to Allah.

You can read about them here.

I ran (more like brisk-walked and half-jogged!) and finished 6 marathons in the past 6 months :)

This week I went for a RPM / spinning class and I am super-excited about it. Never once in my life did I imagine that I'd one day have the ability to be a regular gym-goer.. and to be able to attend exercise classes, just as if I am fully normal. Praise God.

To my scoliosis friends our there who are going through hard times and feeling as if normality is so much out of reach.... please have faith. Have faith in yourself. Have faith in a Higher Being (whatever your religious believe might be, it doesn't matter.. have faith in a higher power..). Have faith, stay strong, and don't give up on the hope that one day normality will be within your grasp and in your life once again.

Trust me. I didn't even think I could walk again. Whatever negative feelings, depression, frustration, helplessness, anger, envy, hopelessness that you may feel... I've felt it too. And sometimes on bad days, the feelings still come knocking on my door.

And to my scoliosis friends who are living the very much sought-after normal life we often hope and pray for..

Let us say thanks and cherish these moments.. one day at a time :)

For who knows what tomorrow holds for us...?

Physiotherapy

Only a professional physiotherapist can or should be allowed to design a tailor-made physio program for any Scoliosis patient. Every curve is different, every patient is different.

As a teenager, I saw the physiotherapist at UH (now more commonly known as UMMC) a few times so that she could update my physio-exercise regime. The odd thing though, back then, regular physio sessions weren't really the priority. If I recall correctly, I saw the physio once when we first discovered my scoliosis (at 12 years old). She gave me several exercises to do twice or three times a day (or more often if I could manage it) on my own at home. Then about 6 months later my Dad insisted we saw the physiotherapist again, so they gave us another session but with a different therapist. About a year later, Mum asked them if we needed to see the physiotherapist again, but they said there was no need.

To this day I do wonder if things could've been different if they put equal importance on both physio and bracing instead of just emphasizing on the importance of bracing to contain the curves because research now shows that in many cases bracing made no difference.

Now patients have more options and have more voice. We SHOULD remember that we have a voice and we have the right to ask questions and voice out our hesitations and doubts. If your doctors do not give your voice much attention, that is simply unacceptable.

A lot of young people with Scoliosis are going for regular physio and in some cases bracing isn't the main emphasis (depending on the individual cases and the doctors handling the case). So hopefully there are now more ways for us to live more comfortably with our curves and handle our pain better.

Okay back to physio.

Does physio help? I am not a trained professional, but I am a Scoliosis patient who's lived with it for 20 years. So yes, I believe physiotherapy helps.

In terms of whether it helps reduce the curves, I cannot say because I have no real knowledge, no personal experience or authority to say such things.

But in terms of pain management, physiotherapy exercises do help most patients manage their pain better, I believe.

Everyone is different and have different opinions, of course. What I felt was that although there might be some discomfort or pain when you're doing the exercises, the spine and back muscles do feel a whole lot better after you've done the exercises.

So in conclusion, if you have pain due to Scoliosis, looking into physiotherapy might help you manage your pain better.

Guilty As Charged

I've been guilty for not blogging often enough. Guilty of not replying to comments and emails soon enough. My deepest apologies for that. Always.

Life's demanding and don't we all know it. Everyone's singing that same song now.

I'm going to be selfish for a minute here and update on my progress.

Since starting the gym and having a trainer who designs the workout programs to fit my curves and needs, I've lost 6 kilos and it feels great. Not specifically because of vanity purposes (heck, who am I kidding, right? A girl's has needs to be vain!), but mainly because I feel lighter and healthier. My spine really does feel stronger.

I am absolutely serious when I say I have never felt this strong in my life.

Strengthening the back muscles have helped tremendously in improving my quality of life. I can now help my son onto the throne, or even into a supermarket trolley (I couldn't do this before because my back would ache badly afterwards). I can now get on my knees to scrub the kitchen floor (although being pampered by good ol' husband is always a good thing to have, LOL). And I can now pray like a normal person with little limitations. Rukuk, sujud, duduk tahiyat awal and akhir.. they're all doable now. This is super awesome to me because I haven't been able to pray this way since I had the implants put in during the first surgery in 2002.

I still take it slow and am always very careful before doing a strenuous activity, but regular exercise and training has given my scoliosis some miraculous progress and improvement.

Okay that's enough of the me-news. Now on to something else.

Physiotherapy.

Lets talk physiotherapy.

Basic Exercises for Scoliosis Patients

As a person with scoliosis, the primary goals of an exercise program for your spine should be to make the muscles of your back, shoulders, and upper back strong and flexible. (Quoted directly from this site) As your back muscles become stronger, your back will feel less tight and more flexible. In many cases, once your back muscles become stronger, your pain might decrease or at least become more manageable.

This site indeed has some good basic exercises for scoliosis patients, aiming to strengthen your back. They even have videos showing how the exercises are done.

Please bear in mind that you should only proceed if the exercises do not cause you discomfort or pain. And if you're worried, do talk to your doctors first. However, I've tried the exercises and found that they're light exercises, aimed to make strengthen your back and make your back feel good. They are not to exercises to 'correct' your curves, but they do make my spine feel more flexible and less taut/tight.

IMPORTANT TIPS for those just starting to exercise:

- Start slow. For instance, start with a 15 minute walk at moderate pace. Then slowly build up as you feel stronger. You could increase to 20 minutes at faster pace, then 30 minutes, and so on.
- When doing weights, start with light weights. I started off with just 1 kilo weights. Build up as you go, but never to the point of feeling pain on the spine.
- "Tingly" or "prickly" sensations around the back muscles when you first start your exercises is normal. But stabbing pain on the spine is NOT normal. Stop immediately if you feel any pain on the spine!

Lastly, I like what this site says about scoliosis and exercise:

"Scoliosis is not related to flexibility issues or lack of strength. Scoliosis does not act as a deterrent to normal physical activity. Children and teenagers with scoliosis can participate in sports and recreational activities. They can even perform normal exercises that help build muscle strength and endurance. They can even train to improve their cardiovascular conditioning like normal people."

The Importance of Strengthening Your Back Muscles

I have so much to share but there is always so little time in a day!

But I've got a piece of good news and new discovery to share with my fellow scoliosis friends. Alright, maybe this discovery is not so new for some of us out there, but it is to me :)

About two months back, I discovered I had some free time in hand while the son is at playschool. So I decided to join the gym and get some serious workouts done.

I've always been a big believer in exercising. As a teenager I didn't really like physical activities because I was teased in school for wearing a bulky body brace, and for being so clumsy and not well-coordinated enough. Things were emotionally hard back then, so I didn't participate in sports much. If I had a regret about scoliosis, that would be it. I let the teasing and my lack of confidence get in the way and I wasted precious years not using vital parts of my body.

It wasn't until I was in college that I started brisk-walking and swimming on a daily basis in an effort to lose weight. I didn't lose weight much, but I was in good shape and felt good about myself. I had my first surgery within months of finishing my degree, and as soon as I could walk, I got my Dad or my then-boyfriend (now my husband) to drive me to Kiara Park so that I could walk. At first I walked so slow that everyone stared and wondered what was the matter with me. And at first it took me nearly 30 minutes to complete one round around the park. But I kept walking, sweating in my singlet and post-surgery body braces, not caring about those stares and whispers. And to this day I am glad I ignored them all!

Six months later I was out of the braces and walking 5 to 7 rounds (I took the big and uphill routes too) every single day. I had lost 15 kilos since the surgery and feeling good about myself.

Throughout my postgraduate studies in Melbourne, walking was my major exercise. A couple of years later when I felt super-strong, I started buying aerobic and strengthening workout videos to do on rainy winter days. I hiked a lot too on weekends and holidays. Hence I maintained my weight until I got pregnant with my son four years after my first surgery.

During my pregnancy I gained 16 kilos but kept active. I tried to workout three times a week throughout the pregnancy. After giving birth, it got hard to stick to an exercise plan. I was working and we were moving house, then the implants got infected and I couldn't walk for half a year. I started walking again when my son was 18 months old. That was when I decided to restart a workout schedule.

I walked at the park 5 days a week, 30 minutes each time. But it wasn't sufficient. My spine, and back muscles still didn't feel strong enough.

So now I've joined the gym. And to make full use of the gym, and to build strength on my back I have a personal trainer to train me twice a week. So every week while my son is at school (he goes to playschool three times a week), I'd be at the gym. Aside from that, I make sure I work out on my own home equipment three times a week. In total, I try to work out 6 days a week, about an hour to 2.5 hours each time.

And lo and behold, I am amazed at the strength that exercise can give us!

By us, I specifically mean us with scoliosis condition.

For the first time in 8 years, I am praying normally (standing up, with abilities to bend and prostrate as I wish). I can lift groceries, I can even lift my son (although I don't make a habit of it), I can bend down to look for things under the bed.. and so much more. My back muscles feel strong and capable of living a very-nearly-normal life. Praise God.

So what is my point here??

The point that I am trying to make is.. don't give up!

When you have scoliosis, some days the pain can drag you down. Some days it doesn't seem as if you will ever be normal or live normally. Some days there are just so many things that you cannot do.

Fight it.

Fight the pain. Exercise.

Go ahead, try it :)

Start with walking. Just walk. Go to the park and walk. Move your arms in silly ways that make you feel good and ignore those evil-starers. And don't stop for 30 minutes.

Stretch when you're done with your walking. Stretch your legs, your arms, your back. Be careful, but stretch. And feel good about your achievement. Because this will be the start of great benefits.

There are specific exercises to do to help strengthen the back muscles. I'm not talking about strengthening the spine or exercising your curves. What I mean is, if you concentrate on strengthening your back muscles (those muscles surrounding your back area), you can minimise discomfort and pain, and you'll also find yourself feeling stronger and better about yourself.

If you're unsure and need help, do talk to your doctors and physiotherapists. Ask them about suitable exercises. If you can find it, find a trainer with experience in aiding scoliosis patients.

In the following weeks I'll take some pictures and talk about the back exercises that I do, for the sole purpose of sharing personal experience and giving an idea of the benefits exercise can give scoliosis patients.

Is there anybody out there who have inspiring stories of fitness or strength-related discoveries to share? We still have much to learn about how exercise can benefit our scoliosis condition!

The Importance of Diagnosing Scoliosis

I always believe that you are the expert of your own body.

Many people with Scoliosis out there have been diagnosed and have received treatments, or receiving treatments right now. But there are also many individuals out there who suspect, or know that there is something wrong with their bodies. With their spines. And everyday they live in worry or pain or even fear, because they are unsure of what to do.

This might come a little late, but lets look into some definitions of what "Scoliosis" is. Before I begin, again please bear in mind that this site is not a medical site. All contents are based on personal experience, personal research and personal opinions. So please forgive any mistakes on my part and I welcome inputs from better-informed individuals :)

This wikipedia article gives a simple but thorough explanation of what Scoliosis is.

From the article, we concur that Scoliosis is a medical condition in which a person's spine is curved, from side to side. The two common curves for Scoliosis patients are usually either "S"-shaped curve, or "C"-shaped curve.

The first thing that Scoliosis patients must realise is that every two patients' curves are not the same. The curves, its severity, its degree, and the discomfort or even pain that a patient goes through is not similar and alike to all other patients.

Lets take a look at the different curves pictured below.

The illustrations above show the different types of Scoliosis curves. Curves can be thoracic (upper spine), lumbar (lower spine) or even thoracic-lumbar (involving both the upper and lower spine). Patients with Scoliosis might have a curve curving to the right side of their bodies, or to the left, or both (in S-shaped cases). Some people have slight curves which some doctors would choose to monitor, or treat with bracing. Some people have moderate to severe curves that require bracing or even surgery.

The point that I am trying to make is that each person's Scoliosis is unique.

And this leads me to the next point...

This unique reason is why it is very VERY important to get proper diagnosis for your Scoliosis.

By proper diagnosis I mean a diagnosis made by a spinal specialist, a doctor who can tell you exactly what your curves look like, how un-severe or severe it is, and what treatment options are there for you specific situation.

My friends, going to the doctor and hearing their explanation can sometimes be a daunting prospect. Scary, even. But getting a proper diagnosis for your condition is vital because only then you can decide which course of action to take for yourself.

Noone can force you to wear the braces or have a surgery. Not even a frightening-looking doctor. Forgive me, dear doctors; please know this is not a personal attack on doctors as a whole!

What I am trying to say is that it is important to know the reality of the situation you are facing, and what might lay in the future for you if actions are not taken.

Don't postpone your diagnosis. Don't postpone hearing your treatment options. Because one day you may very well regret it.

Today your condition may be treatable. Today your condition may allow you to live like a normal person.

But ten years from now the pain may be severe. Ten years from now the curves may have doubled. Ten years from now you might have to resort to corrective treatments which could have been avoided if you are treated now.

Trust me on this. I know this because I've made that mistake before.

Back in 1994, they said I needed a surgery. My curves were about 50 degrees back then, and although I did experience some pain on a daily basis, it wasn't anything I could handle.

By 2002, my curves had progressed to between 80-95 degrees each. I had a huge hump on my back (I looked like the Hunchback of Notredam), clothes didn't fit well at all, and worst of all was that I had pain every single day. It hurt to exercise. It hurt to breathe sometimes (because the curve was pressing against my lungs).

In life there is no "should have", "could have" or "would have". You cannot look back and change things even if you wanted to.

So.. as daunting as it may seem... go get a diagnosis.

And then, where you choose to go from there is entirely up to you. Noone can force you to do anything you are not willing to. But this is something you can do for yourself.

You can learn the truth and deal with it now, rather than kicking yourself in the hind region perhaps ten years down the line.

Tips on Wearing Body Braces to School

Many have asked me about how it is like for a teenager to wear braces nearly 24 hours a day. Many have also asked for advice on how to make braces-wearing easier.

The truth is that I cannot speak for all patients who've experienced bracing. I can only speak of myself and share my experience with others. And because each of us has somewhat different experiences, that is why it is so important for us to share stories and information... because maybe our stories and experiences would be useful and insightful to others who are going through similar situations.

So lets talk about wearing braces to school.

This is Malaysia. It's hot, humid and sticky here. Tourists come here to parade around in sleeveless or shorts and bikini tops.

The last thing any girl (or boy) wants to do is wear a hard, thick plastic corset under those warm layers of school uniforms.

Our friend Twilight Princess (I hope you don't mind me quoting you here) mentioned that she wears the SpineCor brace. I Googled it and this is what I found.


Apparently SpineCor braces are dynamic braces which allow more flexibility in movements as compared to older braces made of hard plastics and metal.

But let's face it. The truth that we cannot deny is that no matter how "flexible" or "dynamic" braces are... braces are still braces.

Braces brace your body. They have a job to do. That job is to hold your spine in place, to ensure that your curves are managed and not worsen.

The following is a detailed photo of a SpineCor brace.


These photos are put here as illustrations to show what we have to put on our bodies. These braces made of synthetic materials which should be worn above cotton singlets or cotton t-shirts should ideally go underneath your day-to-day clothes because noone really wants to go around wearing braces over their day clothes. So that's how I wore it; I wore a cotton singlet under the braces to help absorb sweat and minimize abrasion on the skin, and over the braces I wore my normal clothes. So when I went to school, I wore my school baju kurung above the braces.

I'm sure seasoned braces-wearers know all this already ;)

Okay, so below here are some tips on wearing braces to school on a daily basis. Anyone out there who would like to add their own tips, please feel free to add to this content in the comment box. Thanks!

• Choose comfortable, absorbent camisoles/singlets or thin t-shirts (preferably ones that are body-fitting) to be worn underneath the braces. Loose singlets/t-shirts are less comfortable because the braces are made skin-tight (molded to your body) and if you wear a loose undergarment, they'll create folds under the tight braces and once you start sweating, the folds of the clothes could eventually cause discomfort and itchiness. So try to look for cotton singlets that cover all surfaces of your body which the braces covers. As shown in the pictures above, the girl is wearing a nice fitting t-shirt which covers all the parts of her body that the braces covers. If there are parts of your body which comes in direct contact with the braces, it can be quite uncomfortable because sweat could make skin in that area become red and itchy.

• Do have a soothing balm or lotion at hand. The braces could cause redness and itchiness on your skin, and you will feel this mainly when you take off the braces. I personally used a lot of aloe vera gel and vitamin E lotion. Sometimes I had rashes because of the heat and sweat, and I found that putting on medicated powder before you put on the braces, and then putting some aloe gel after you take off the braces (on the red areas created by the tightness of the braces) seemed to help ease the rash. Of course different stuff works for different people. In time you'll find what works best for you.

• Bear in mind that there are just some activities that are somewhat too uncomfortable for you to do with braces on and it's okay to admit this to the teachers. School is a hot and uncomfortable place most days for braces-wearers. This may seem like an unappealing or embarrassing idea, but letting your teachers know your condition can be very very helpful. Granted, as a teenager I did use the scoliosis excuse to get out of unpleasant activities such as playing netball under a 40 degree sun.. (hahaa) but the reality is some teachers can be supportive and helpful. And the ones who aren't should be ashamed of themselves! Hehh.. that's the reality of life, folks. For instance, when I was 13 and 14 years old, I was in the evening session. On Mondays we used to have "perhimpunan" in the courtyard, right there under the hot afternoon sun. Sometimes the heat just got too much for me and I had to ask to sit at the canteen, out of the sun. Yesss I will not deny that being singled out made me feel like a freak sometimes, but it was better to face the reality of the situation rather than making a scene of fainting right there in the middle of the perhimpunan! Right? So... do try to realise what you can and cannot do, and don't be ashamed to admit it.

• Try to arrange for an occasional "time-off" period for important sports activities and such, if necessary. For instance, for sports activities (what we used to call as PJ; Pendidikan Jasmani, or for extra-curricular activities), my mom used to allow some "time off" from wearing the braces. You could say those were the highlights of my days ;) For extra-curricular activities (house practice, sports society/club and such), I'd leave the braces at home, Dad would send me to school and fetch me afterwards, then I'd wear the braces again once I got home. PJ was another different matter though. It was tough convincing my parents to let me go to school the whole day without the braces, so after much sulking (on both parts) we reached a compromise. I joined the class for PJ in the fields every alternate week. One week I'd be allowed to go to school without braces on days that had PJ classes. Then the next week I would have to sit in the shades while I watched my friends play netball because it was too hot and uncomfortable for me to join any strenuous exercise activities with the uncomfortable Milwaukee and Boston braces on. Why is "time-off" an important option for you to consider? Because wearing braces should not mean that you must stop your favourite activities or put your life on halt. It's important to continue pursuing your hobbies, just remember to plan your schedule, and plan ahead.

However, with the recent developments in braces-making, more dynamic and flexible braces such as the SpineCor brace shown above would mean that scoliosis patients could participate more in physical activities. If anyone has experience in this, please share your experiences with us.

And then there's of course the issue of your emotional state of mind when wearing the braces to school. But that's another story altogether, so we'll talk about that in another entry.

So do share your tips, people. Braces-wearing doesn't have to be a miserable, imprisoning ordeal if we manage it well, God willing! :)