I’ll admit it, it has been a while since I last posted. Uni got crazy with the end of semester and I just needed some time out to myself – something everyone should do at some stage! So apologies for not being active.

My resolution from now on is to post at least once a week! 

I thought i’d write a post on my experience with scoliosis and travelling. I’ve been daydreaming recently about travelling to Europe again (who is with me?!) and was thinking about how it will be different (hopefully!).

In 2012, just before my surgery, I embarked on the trip of a lifetime to North America (LA, Florida (Orlando) and New York) and then onto Europe and the UK for a month. I had my reservations about my back and travelling – how uncomfortable would the 15ish hour flight to LA be? Would I be able to move if I needed to? Would people look at me funny if I needed to take some pain killers? What would the beds be like etc. I think my biggest concern of all was leaving my trusty heatpack behind!

What I ended up with was more than I ever could have imagined! My GP gave me a toiletries sized bag full of all sorts of drugs; painkillers, drugs for an upset stomach, cold and flu – you name it, I had it with me. Accompanying this bag of goodies was a letter from the GP stating that they were all for my personal (medical) use. I was petrified entering America at this point – having never been to America before and only hearing stories about customs and immigration there and watching shows such as border security, I had the distinct vision I’d get off the plane, they’d find my bag and turn me straight back around to Australia. … Thankfully that didn’t happen! I managed to enter smoothly and enjoy the next 2 weeks. 

Shoes:

Most 19 year olds don’t like wearing runners as there every day shoe choice. When travelling, I didn’t really have any other option. I tried to get the best looking runners I could find (thank you Nike and your Nike frees!). While it was inconvenient at times, I still believe it made the world of difference. Yes, I was still uncomfortable especially with all the walking that tourists do, but I was able to control the pain through pain killers.

Roller coasters:

There was no way I was heading to the happiest place in the world for the first time and not experiencing it fully! No matter how much pain I’d end up in! I had the best week of my life at Disneyworld Orlando (+ and extra day at Disneyland Paris). I put up with the headaches, the back pain and everything else associated with it to go on almost every single ride possible. I’m so glad I did.

Beds and transport:

Probably the worst part of the trip. The plane trip not so much but the bus rides were excruciating! At least on a plane you can get up and walk around – you’re not really able to do that on a tour bus! Again I handled it the best I could – obviously there were days when the pain just got way too much for me and I’d be in tears for most of it, other times I’d be able to alleviate it by stretching and gentle exercises. 

My advice:

Be prepared. Take copious amounts of pain killers with you, especially if you’re planning on theme parks, adventure activities etc

Definitely take runners. 

Don’t let it stop you from doing what you want (unless your Dr specifically says no). Don’t let it control you. Live the life you want to live 🙂

 

Shan 🙂

Advertisements

I started netball again 6 weeks ago and for a good month of that I’ve had significantly reduced strength in my whole left side.

A week ago I went back to the physio.

I was always told that when I did go back to netball, I would probably endure some form of weakness or pain due to the fact that my back no longer absorbs shock in the same way a non-fused spine does.

Unfortunately now my spine is not absorbing shock both under my fusion as well as in my neck – causing reduced strength in my left side.

Unfortunately, the best thing I can do to prevent this is to give up netball for good. While it is extremely upsetting to make this choice, I also acknowledge that if I don’t, it will continue to get worse and I’ll have to live with reduced strength and pins and needles in my left side – not a fun feeling!

It is super frustrating, considering what I’ve been through and having been told that I should be able to return to sport – however it could be a lot worse. If not being able to play netball is the worst this gets then I think I’m pretty well off. It’s just a matter of prioritising – the ability to walk and be pain free, or play sport. For me it’s simple – I realise for others it may not be quite as simple but I know there will be plenty of other things I can try my hand at throughout my life to keep living my active life.

On the plus side of this, 2 days later I successfully completed the Swisse Colour Run in Wollongong – a 5km run/walk where colour is thrown at you. I am so proud to say that I managed to finish this – my first ‘major’ running event post surgery. While I did have to walk sections of the course, I managed to run a fair chunk – a huge achievement if I do say so myself! – a special shout out to one of my best friends who ran it with me and got me through some of the many (mentally) painful sections of the run 🙂 

Shan 🙂

An Interesting Reflection

Firstly – I’d like to apologise for being innactive lately – Uni holidays have finished so I’m back into the swing of things down in Albury. Now that the first week is done I’m hoping to be able to blog more often.

An Interesting Reflection is written on the basis of something my friend said to me the other day.

We were at the gym and had just finished a body balance class together. Body Balance is a mix of pilates, yoga and tai chi moves – requiring much determination, coordination and balance (also perfect for core strength and rehab from spinal injuries). The class had just finished and my friend went to say ‘oh my gosh my back is so sore’ but before she finished she caught herself and instead said ‘wait, I shouldn’t be complaining to you about back pain’. I’ve experienced this before as well in the workplace where somebody I worked with and I were eating lunch together and they proceeded to tell me how sore their back was – and then stopped and realised what they were saying.

I find this interesting because everybody experiences pain in their lives. Just because I lived with chronic back pain (and still some pain today) does not mean that somebody else’s pain should be any less significant to them because they are aware of our situation. While it is incredibly nice of them to realise, appreciate and respect our situation, I truly believe that if they need (or want) to complain about their pain they should be free to do so. For all I know, my friend could have had a serious injury and was voicing her concerns. 

Whenever somebody catches themselves complaining about back pain to me my response is always ‘and? you’re allowed to complain just as much as i was’. Personally, I learnt to live with my daily pain and taught myself methods to try and reduce the pain when I needed to. I (and most of you) lived with chronic pain – not intermittent pain. We know just how bad pain is and just how much it can affect us both physically and mentally so why would others not be affected in the same way? These people may have never experienced that sort of particular pain for them and therefore don’t know how to deal with it or what to do about it and are simply seeking advice. 

I will also recognise that there are always people (usually the same ones) who continuously complain about their backs (and other body parts for that matter) hurting and being in ‘constant’ pain – yet never seem to do anything about it to help themselves. Yes, this happened to me and yes it was so incredibly frustrating. I tried my best to politely explain that maybe if they were in such constant pain they should see somebody about it, find an answer and get it fixed. There were times when I did snap and let my frustration boil over – I think this was mainly because I understand the importance of looking after your body, and these people never seemed to want to help themselves. It also upset me because i didn’t bring this pain upon myself (no, others might not have either) yet absolutely nothing I tried alleviated it. My advice here? Try and let it go – accept that people will be selfish and only think about themselves (hey, they’re only human!). Pain makes us all go a little crazy sometimes…

Everyone experiences pain in their lives – we’re just lucky enough we know how to handle it (to a point). Maybe we should be the ones trying to help others through theirs…

 

shan x

top tips and lessons learned

it’s funny what a journey like this can teach you. i was naive enough to believe everything would be the same throughout the journey and afterwards but boy was i wrong. i’ve had a think about what i learnt and what my biggest tips would be for someone about to start their own journey. keep in mind each individual is different and you may find you learn other things.

i can honestly say that i now attribute a portion of who i am today to the things i learnt during my recovery and i am so, so thankful for that.

1. allow yourself to be scared. i never once let myself be scared about the situations i would encounter. this may sound silly, i know but i’ve never been the type of person to allow myself to be scared at the prospect of back surgery. the only emotion i really found myself experiencing was that of relief. i finally had an answer, although my gut feeling was i always knew this would be the final answer. i wasn’t upset, i didn’t let myself be. i wasn’t scared, i didn’t want to be scared. everyone continuously asked me if i was scared and why i wasn’t. my answer was simple – this had to be done. it was going to improve my quality of life and hopefully reduce the extreme amount of pain i suffered from daily. why would i be scared if it was going to fix this?

the first time i experienced anything but relief was when i was wheeled into the anaesthetic room after leaving my parents. as i lay in the bed being wheeled along a sudden wave of fear hit me, and i couldn’t do anything about it. i balled my eyes out – the nursers were fantastic, they know better than anyone what you’re about to endure. one nurse wiped my tears and just let me cry – she didn’t say a thing, she understood.

be scared, you’re only human. allow yourself to be flooded with emotions when surrounded by those who can support you – your family, your closest friends. they are the ones that will be taking this journey with you.

2. you will lose your independence and dignity to some degree. again, i refused to believe this – probably due to the lack of information, or exposure to previous patients stories. at the time one of my friends was a student nurse and no matter how she tried to convince me, i refused to believe i wouldn’t be independent. i also flat out refused i would be having a catheter (because really, who wants to have one of those!).. again i was verrryyyy wrong.

from the moment i was admitted i’d lost my dignity. being made to wear disposable undies (which resembled more of a nappy than underwear), to waking up with no disposable undies, tubes coming out of my left, right and centre (yes, i lost the battle with the catheter – but wow am i now grateful for it!). nurses try their best to let you keep your dignity, honestly they do. but lets be real here – you cant role yourself over, you cant get up to shower and you most certainly can’t get yourself up to get to the bathroom (at least for the first few days anyway).

independence was also lost. it is extremely hard for some people to accept help, especially when it means losing their own independence to some degree – myself included. it shocked me by how little i could do. now i don’t mean to frighten anyone out of getting the surgery, but literally for 3 days all i could do was push my PCA (patient controlled analgesia) button when i needed a top up of pain killers. i couldn’t get out of bed myself (it took at least 2 nurses each time), i couldn’t shower myself. honestly for me it was horrible, but i was so dosed up on pain relief it didn’t really matter.

3. you will have a sudden new found appreciation for your mum (or dad, partner etc). for me it was my mum (don’t get me wrong, my dad was a trooper and did everything he could) but mum literally did everything for me. when i was in hospital she always made sure i had everything i needed (typical mum!) including some sneaky midnight snacks within available reach, with my eyes closed. in between my surgeries, whilst back home in canberra she diligently put my back brace on me whenever i was vertical (read: only to eat or go to the bathroom). she had my painkillers all organised and given to me before i knew i was even in pain. she would wake me up to ensure i ate, she would shower me, wash my hair (she even shaved my legs once – gross? probably. necessary? definitely).  she even slept on my floor for 45 straight nights after my second surgery to make sure i was ok.

i always knew my mum was great – but this really topped it off (i mean really, how many mums out there will willingly shave their child’s legs!). i learnt to never underestimate the power of a mothers love. we are always told how strong a mothers love it, but this really shows it. for me, mum shared every high and low, she let me take my anger out on her, she comforted me when i was frustrated and upset. my biggest piece of advice here is once you’re feeling better (it doesn’t necessarily have to be straight away), show your appreciation for whoever sailed with you during your darkest hours. it can be as simple as a bunch of flowers, a block of chocolate or a thank you card – they truly do deserve it.

4.  you will learn who your true friends are. unfortunately times like these really do prove who your true friends are. personally, i had always had a heap of friends, from different areas of my life, different social groups etc. they were all great in the lead up, truly they were. it was afterwards that really shows peoples true colours. i came out of this being able to count the number of my true friends on two hands. i had 3 people visit me while in intensive care the first time, 2 of those 3 stay an extra few days and a different 3 visit me when i was on the ward. in between the surgeries these friends visited with out fail every day. half the time i didn’t even know they were there, but they had come anyway just to check on me. while i got the odd message and visit from (a lot) of others, it was these special few that i still count as my true friends. even once i seemed ‘physically’ better, they stuck by me during my lowest times. along with my parents, they were the ones who experienced the highest of highs and the lowest of lows with me. 6 of them. out of a lot of others, 6 of them stayed by my side the entire time. at that point, it didn’t really click. i like to see the nice side of people and just put the lack of others visiting down to their busy lives. but in all reality, these guys were just as busy and still made time to see me every day.

one of my best friends was overseas at the time and while it was so so hard to go through this without her, she was always there for me. she was having the time of her life but would happily let me call if i needed. she cheered me up and calmed me down all from the other side of the world. impressive, i know! – to this day, she is still my best friend. another thing i am truly thankful for.

i still do have a lot of friends, and im sure you will also continue to have a lot of friends, but you will find out who your true friends are. and they may not be the ones who you thought they were…

5. painkillers will become your new best friend. truly. whoever invented that stuff is a legend. from the moment i woke up from the surgery i was in all types of pain. it felt like i had been smacked by truck a thousand times. the pain was piercing. every time i took a breath it felt like a dagger was being driven into my lung, i had this indescribable pain in my left shoulder (kudos to my anaesthetist for massaging it for a solid 1.5hours) the only way to describe the type of pain experienced is that it was horrible. so so horrible. BUT it will get better – i promise you that.

you’ll be dosed up on all types of good stuff. morphine, pca, epidural (i was lucky enough to have one of these), nerve blocks and trusty old panadol to try and minimise the pain and make you comfortable. unfortunately as soon as i woke up everyone in my direct vicinity realised myself and morphine didn’t like each other. don’t fret, if this is the case for you the nurses will act quick smart and a doctor will prescribe an anti nausea medication (thank god for whoever invented that guy) and a different type of medication. it may take a while, but you will eventually become comfortable, at least for a while.. until you decide it’s a good idea to move… but seriously, have trust in your team, they are there to help you.

6. physios will become your enemy. actually, it depends what sort of outlook you have. one day you’ll love them, the next day you’ll loathe them. if you’re like me, they’ll give you this funky toy to blow into and try and get three balls to rise. the point of this is to get the fluid moving off your lungs and allow you to breath easier. once you’re a bit more mobile, they’ll probably get you to start doing some soft leg exercises and then once you’re ready, get you up and moving. i first had to get from my bed to the chair – it seemed to take hours. i eventually sat up, then proceeded to shuffle what felt like 5km to the chair and sit back down. i dont think i took either of my feet off the ground once. but i made it. tough? yes. rewarding? extremely. being able to make that chair is such an achievement and you should be incredibly proud of yourself for making it. nobody but you will understand just how hard those first few steps are.

there will be days when you loathe the physios. you wont feel like getting out of bed and they will force you to go for a walk. you will curse them under your breath the entire time but just grit your teeth and go because remember they’re only trying to help you out.

7. ask questions. there are no such things as stupid, silly or dumb questions here. cliche, yes but you’re about to experience major spinal surgery here – you’re allowed the answers to whatever questions you want. and if you dont get them – dont settle for that. keep seeking the answer. if you’re not happy with an answer, get a second opinion.

8. hospital ceilings are very boring. this might sound a bit obvious, but (again) i thought i would be moving about, or at the very least sitting up, reasonably soon post surgery. my reality was a white ceiling for the best part of 2 weeks. because of my unique circumstances the only time i was allowed to be vertical was to go to the toilet, shower or eat. when i was upright i had to be in the back brace. the process to get myself up, in the back brace and to wherever i was going took a good half an hour each time. i just couldn’t be bothered so i lay and stared at the roof letting my imagination run wild. hopefully you won’t have the same fate as me and will be able to at least sit in a chair for a while.

9. nurses are some of the greatest people to be placed on this planet. it takes a very special person to be a nurse. i can not speak highly enough of the various teams of nurses that looked after me throughout my three hospital stays. they listen to you, they’ll chat with you, they’ll make you feel better when you’re down. (most) of them will always have a smile on their face. yes, you will get the occasional grumpy nurse, but please don’t take the personally. i know you’re in a horrible situation, but just think of the position they’re in. also – be nice to them, they’re the ones who give you your drugs! please please please, make sure you thank them for the amount of work they do to look after you!

10. things may not always go to plan. reality check: you’re having major spinal surgery. of course there are risks associated with this and before you start your journey, you should be ok with fact that things might go wrong or might not work out the way you had originally hoped. for me, i was ok with this. i needed to be – there was no way i could live my life in that much pain, and there was no way i was not going to be able to play with my own children. things didn’t go to plan for me – far from it. but i’m OK now 🙂 they could have ended a lot worse, but they didn’t. if you do find yourself in a situation where you’ve encountered an obstacle – be positive, be scared, be angry, be all the emotions but just remember to trust your team. they know what they are doing and chances are – you will be ok.

11. you will be emotional. you will be in all sorts of pain, the painkillers will play with your emotions and lets be real – you will feel sorry for yourself as much as you really may not want to. all of this is ok – you’re allowed to be emotional, you’re only human! if you do find yourself emotional, allow time for yourself to feel that way then find something that makes you happy and pick yourself back up 🙂

12. things will be OK in the end. i promise. you will have bad days, i had A LOT of bad days but there is always a light at the of the tunnel. it might only take a couple of weeks, or it might take a few months but the pain will go away and you will start to feel better. you will start to become happier and begin to feel like your old self again. it took me a good year to feel myself again – but then again, things did take a weird turn for me. don’t try and rush feeling OK, that isn’t going to help – it will come with time, i promise.

 

shan x

 

 

 

Luck

I realise (and am incredibly thankful) that I have been very fortunate throughout my journey with Scoliosis. There are many many people around the world who suffer from a more severe degree of curvature than I did. I was also extremely fortunate that I didn’t suffer from a lack of self confidence due to my curve. Now that I look back, and after having spoken to other scoliosis patients, I personally believe that the string of incidents which led me to Sydney happened out of luck as well.

I count my lucky stars every single day that I found my surgeon. Somebody who actually took the time to explain why I was in excruciating pain, took the time to look for answers and who honestly (albeit harshly) told me what I should expect from life if I weren’t to get the surgery – think being in a wheelchair by 30 and not being able to play with my children if I choose to have them.

I am also extremely lucky that things turned out OK in the end, because in reality, things were so close to not being OK. After some serious complications in what should have been a fairly routine surgery (however also extremely risky), I definitely had somebody looking down on me that day and taking care of me and for that I will be forever thankful.
It was about 8 hours into my surgery when things started to go wrong. My surgeon and his team had done 95% of the fusion (T10-L2 – again, very lucky with how small the fused section was). They had taken the inter-vertebral discs out and replaced that with bone taken from my rib, they had put 8 screws in and it was time to put the rods in to hold everything together. My surgeon explained to me pre-surgery that they would bring me out of my anaesthetic to a ‘semi-concsious’ state and ask me to move my legs at random intervals throughout the surgery – a normal precautionary measure in scoliosis repairs. Before the rods were in I was fine, however as soon as the rods went in is when things took a drastic turn. I wasn’t able to move my left leg at all and my right leg was extremely ‘sluggish’ as the surgeon put it. They decided at the time the best thing to do was to stop, take the rods out and see what I could achieve. At that point I had some sensation back in my left leg, so out came the rods and my battle began…

 

shan x

 

Setting Myself Straight

I was 12 when i was diagnosed with curvature of the spine, more commonly referred to as Scoliosis. I had just started high school and was competing in athletics at a National level and netball at a State representative level. I had always been extremely active.

I was totally oblivious to the fact anything was wrong and to be honest, so was my family. It wasn’t until I had a photo taken of me in my lycra athletics two piece that somebody picked up on something not quite right. In the photo I was severely tilted to the left, with my right hip protruding dramatically.

Armed with X-rays and a referral from my GP, my parents and I sat in the waiting room of the specialists office not knowing what to expect.

Fast forward 7 years and I was in a Sydney hospital awaiting a spinal fusion to correct the curve. 18 months post surgery here I am, sharing my story.

shan x