Dear Twelve-Year-Old Me,

Dear twelve-year-old me,

Right now, life is pretty good for you. You've just started High School. You're the Form Captain for your class. You got into the audition-only choir at school. You're in concert band and orchestra playing tenor saxophone, and you were just selected to be the solo singer at the School Easter service. If I remember rightly, your favourite show is The O.C currently and every morning you head to the gym with Mum before walking up to school. Every day is hectic - you're running around from one rehearsal to the next, texting your friends frantically as you hurry around the school. Yeah, right now, life is great.

But on April 15th that's about to change. You're going to fall over at the school bus stop and hurt your ankle. Yep, in front of EVERYBODY. But don't be embarrassed. Everyone is really nice to you and they look after you as you wait for the ambulance. The next few months are going to be pretty tough. You'll go to lots of appointments, where most doctors aren't going to believe you when you say how much pain you are in. But the pain is real. So don't let anybody tell you otherwise. You will be diagnosed with CRPS (Complex Regional Pain Syndrome) 8 months later, which is an incurable nerve condition that leaves you in excruciating pain 24/7.

From now on you're going to rely on crutches and a wheelchair to get around. At first, it will be hard because everyone stares at you, but keep your chin up - people stop staring so much after awhile. School stops being as fun as it was at the beginning. Your friends are going to leave you now that you're "weird" and sick. But next year, you're going to meet some amazing people who will still be your friends for years to come. I know it's cliche to say "it gets better" but it truly does. So please, don't give up hope. Just keep studying and never stop singing. Music will save your life countless times in the coming years.

In 2007, you're going to fall into a coma and nearly die. It's going to be one of the scariest experiences for you and your family, but don't worry. You're going to wake up and you'll be ok. From here on in, you're going to spend a lot of time in hospital, and you'll get to know the nurses really well. Make the most of it - befriend the other patients, and try your hardest to bring a smile to someone else's face every day. You can't change where you are, but you can change how you deal with the situation. You'll be sick of hospital food by your 6th week as an inpatient, but Eryn will come in and swap "real" food for your hospital meals. Remember to thank her. Rehab is going to suck. You're going to hate the phrase "No pain, no gain" and want to scream every time a physio or doctor says it to you. Please don't get too mad. They are just trying to help.

When your CRPS starts to spread, you're going to be scared. That's ok. You're allowed to be scared, and crying is not a sign of weakness. It's a sign that you've been strong for too long. So cry. Let it out. And remember you're not alone. You're going to meet some of the most amazing people because of this disease. You'll make friends with other patients here in New Zealand, as well as those living in California, New Jersey, Canada, Israel, Australia, to name but a few. These people are going to help you survive each day. They understand what you're going through and when it feels like nobody else "gets" this pain, they do. So never forget that.

If I had any advice for you, it's enjoy these last few months of normality. Enjoy playing your saxophone. In 2008 when you stop being able to play it, you're going to miss it more than words can say. Appreciate every step you take without pain, and please try to remember this feeling. I can't. Every time you see something beautiful, stop and soak it up. In 2009 when your CRPS moves into your eyes and you start to lose your vision, you'll miss not seeing the ocean sparkle or your cat rolling about in the sun. When you get that Merit next year in your exams, don't cry. Hold onto the fact that you got 25 other Excellences. Remember that it's ok to say you're not ok. So ask for help when you need it.

When you're diagnosed it's going to seem like the end of your life. But it's not. It's just the start of a new life you didn't imagine you'd be living. But trust in God, trust yourself and your own strength, and keep on keeping on. You'll be ok. Trust me.

Love, Your Future Self.

So Much To Do, So Little Energy & Time

Well, I had planned to be productive this afternoon and study, but my whole body is aching and my head is swimming. The thought of reading countless articles for my essay is EXTREMELY unappealing, so I have decided to give myself a couple of hours just to be and then I'll see if I'm up to doing some study.


These past few weeks have been mayhem - with University, the Rugby World Cup, health problems, among other things. Uni's wrapping up for the year now. I've only got two more weeks of classes to go, but in that time I've got 2 essays due, 2 journal assignments to finish, a test, and exam preparation to do. This last week I got an infection in my foot, either in the bone or a joint, which made me feel like my bone was broken every time I moved. I managed to go to classes like this for two days but after crying all through my lectures and not taking in a word of what was being said, I was convinced that it was better if I went to the Doctors and then stayed home. I've been on antibiotics for the past week and the swelling seems to be slowly going down, although my foot is still bright red and really sore. (If I can work out how to do it, I'll include some photos of what my foot looks like at the moment).


On top of this, it's currently the Rugby World Cup 2011 which is being hosted by New Zealand. The games are spread between Auckland, Wellington, Dunedin and then a number of little towns across NZ. They held auditions a number of months ago for people to sing the national anthems at the games - and I was chosen! I've sung at 2 games so far, and have another 2 games to go. I've got the New Zealand vs. Canada game tomorrow afternoon, and then a Quarter-Final game next weekend. It's absolutely exhausting and the effort of simply getting onto the field for the game is enough to make me want to cry from pain, but I made the decision to stick with it. I mean, how many opportunities will I ever I have to do something like this? As painful as it is to do it, I think it would have been more painful to sit at home, and think about what I missed out on because of my health. It's been a lot of fun, and I've met some great people - other singers, and also rugby players!


The other exciting thing that's been happening is that the group of us here in NZ with CRPS/RSD are having a weekend away over Labour weekend. We've been planning it amongst ourselves and it's going to be such a blast hanging out with a group of people who understand this pain. It's given me something to look forward to for when I finish up at University this trimester. My last assignment is due on 21st October, and then I have an exam on the 9th November, so I have quite a bit of time to study for my exam when I get back from our weekend trip. It's so nice to have something to look forward to and to get me through the next couple of weeks. Not long to go now!


Anyway, I should best go and try and get at least an hour's study done while my pain is somewhat bearable. Let's hope I can finish my journal before I need to rest my body!

Playlist

• Set Fire To The Rain - Adele
• Bring On The Wonder - Sarah McLachlan
• The Story - Brandi Carlile
• Get Through - Mark Joseph
• The Chain - Ingrid Michaelson
• Scream - ZOEgirl
• Long Red Hair - Vermillion Lies
• One More Time With Feeling - Regina Spektor

A Letter To CRPS

Dear CRPS,


When I sat down at my computer this afternoon I thought to myself, "Today I'll write a letter to CRPS, giving it a piece of my mind." Easier said than done. I have spent the last hour trying to put my feelings into words - 7 years of emotions and unspoken words are now weighing upon my mind and heart. It's hard to say those things that you haven't said before.


If I have any question for you CRPS, it's "why me?" It sounds childish, but it's true. Why me? Thousands of people injure themselves every day and come off with minor injuries, and yet when I twisted my ankle, you came into my life. And you weren't happy just staying in my right leg, either. As a healthy 13 year old at the time, it seems incredibly unfair that you decided to attach yourself to me and now won't leave me alone.


I've lost so much since getting CRPS - my freedom, being able to play the saxophone, going out with friends, playing golf, sleeping! Every day is a battle, and nothing comes easily any more. Getting out of bed requires superhuman strength. Smiling through the pain is a near impossible task. Because of you, I have to take so many pills every day, and I've had to accept that the life I wanted to live is a far cry from what I am able to live. Part of me hates you, CRPS.


And yet, as crazy as it sounds, part of me wishes to thank you. I'm not thankful for the pain, nor any of the symptoms or health complications I've got because of you. But I am thankful for the fact that from having CRPS I think I've become a better person. I'm stronger, more grateful for the smaller things in life, and more empathetic and compassionate towards others. Because of you, I found God. And because of you I've met some of the most amazing people in my life. The friends I've made who have CRPS are so special to me and have kept me hanging on through all the pain and difficulties of a life with chronic illness. I don't know where I'd be without them, so thank you, CRPS, for bringing them into my life.


I don't know why you chose me all those years ago, and I'd do anything to not feel this pain. My friends are I will keep fighting you and we'll keep hanging on until someone finds a way to get rid of you once and for all.


Until then, yours sincerely,
Ailsa.


Playlist

• Someone Like You - Adele
• Coming Home - Skylar Grey
• Wait - Jason Webley
• Sandy Fishnets - Evelyn Evelyn
• Blessed Be Your Name - Newsboys
• Not Alone - Darren Criss
• Death Whispered A Lullaby - Opeth

A Quick Update

Tonight my eyes are playing up and I'm finding it hard to concentrate on my computer screen, so I'm going to make this update relatively short.


Over the last couple of weeks I've been extremely busy, with the end of this half of the trimester, going up to Auckland for my Grandma's 80th birthday and meeting up with my friend Kylee, who is a fellow CRPS sufferer. We have been Facebook friends for a few years now, and last year we passed each other in the waiting room at Auckland Hospital, but this was the first time we'd properly hung out together.


It was amazing, to say the least! Hanging out with someone who truly knows what it's like to live with this awful disease was so incredible. What began as going out for afternoon tea on Saturday, turned into going to Church together and then lunch on Sunday, and then because of the snow and the fact that all roads out of Wellington were closed, Kylee, her friends Amie and Roxanna, and myself went off to Te Papa for the day on Monday. By the end of these three days I was exhausted and my body was pleading for me to slow down but it was totally worth it. We got some awesome photos together, which will always remind me of the great time we spent together, and will help keep me smiling even on the bad days.


This afternoon I talked on the phone with Caren, another friend of mine with CRPS and even though we'd only ever talked to each other online before, we talked like old friends! It was brilliant being able to compare stories of doctors, medications and the complexities of life with CRPS. I can't explain what a joy it is being able to talk to someone who knows exactly what it's like to live in this amount of pain and yet still try to be "normal". Caren and I are planning to meet up for coffee in a fortnight which is going to be awesome - something I've learnt is that it's really important to have something to look forward to to help get you through the long nights when you can't sleep.


On the subject of things to look forward to, one of my best friends Kaylee and I are planning a CRPS Retreat for 2013/2014. We don't have any finalized plans yet, but so far we know that it's going to be in California and will be for people living with CRPS and their families. You can read more about it on our other blog here.


My leg has been spasming for the last 10 minutes and won't stop, so I'm going to take that as a sign that I should take my leave, take my evening meds, and hope to get a little rest. I hope to be back writing here more regularly now that I'm on University break and will have a little bit more time on my hands. xx Ailsa xx


Playlist

• Stealing Happiness - Gin Wigmore
• Paris - Hera
• Scream - ZOEgirl
• I Wish I Was The Moon - Neko Case
• The Chain - Ingrid Michaelson
• Wait - Jason Webley
• In The Dress - Hera

Dear Mr Potter

Dear Mr Potter,

I first met you in 1998, when I was 6 years old. Since that day, I have never turned back. You have taught me to stay brave no matter what I'm facing. Hermione has taught me that being a nerd is not something to be ashamed of. Dumbledore keeps reminding me that music is one of the most powerful forms of magic there is. Who better personifies the fact that you can't judge someone simply on how they appear than Snape? And Hogwarts has given me a home to return to no matter what.

Thank you J.K Rowling for giving me an alternate reality to live in when my reality got too much, and for creating the Harry Potter community for us Muggles to be a part of. And Mr Potter, thank you for always being here for me.

It's been 13 years now since I got onto the Hogwarts Express alongside Harry, Hermione and Ron, and was sorted into Ravenclaw. Although all the books are now written and all the movies have been released, it isn't over. It will never be over in our hearts and our lives.

Ailsa, 19.
Ravenclaw.

Lots of Links

Links - that was what I was meaning to add to my last post!! I thought I'd share with you some of the things that have kept me going through those long nights when I cant' sleep / the days when moving is just too hard and I'm stuck at home.


1. Conceptis Puzzles
My favourite are the link-a-pix but there's heaps here. They keep me amused when I have hours of nothing to do, and the fact you can save your progress means you can come back to it.


2. Dear Girls Above Me
A catalogue of hilarious things said by two girls living above a guy, in apartments with no sound-proffing! They can manage to make me smile when nothing else can.


3. Facebook
Does it even need mentioning? I keep in contact with some of the most amazing people I've ever met through Facebook and the games on this keep me busy when I can't sleep.


4. Making YouTube Videos
I've linked that to the video I made to raise CRPS/RSD Awareness. I found it a really good way to express how I feel and at the same time help to raise more awareness for those of us living with this condition.


And then there's this - my blog. Although I really need to start updating it more regularly, I have found the sense of relief I feel when letting everything out here imense and thoroughly recommend it to anyone with spare time! It's really worth it.


Anyway, I hope that something there can make you smile, or help you get through a long, sleepless night xx

I Really Suck At This Time Management Thing

Why does it seem that I only think of updating my blog just before University goes back? I have two more days left of my break and then Trimester 2 begins, and I only just realised that I hadn't written anything since May. Jeez. Hopeless, to say the least, but my head has been so full that I haven't really had a chance to sit down and just write in a really long time. So I best get to it, I say!


These past few months have been really testing, both physically and emotionally. With University constantly throwing me more readings and assignments to complete (and my darn conscience won't let me slack off, despite everything!), and with my pain being so intense, I have been really struggling to get through my day to day life in one piece. I work so hard at putting up a good front, smiling and trying to look like I'm coping, so as to avoid having to explain how I truly feel. I guess I'm just worried that if someone asked me how I am and I answer honestly, that I might not be able to keep myself together. But the combination of stress, lack of sleep, and constant pain is wearing me down. It's tough, because on one hand University is so stressful, but on the other hand it's what keeps me sane! Why is everything so complicated?


Tomorrow I'm meeting up with my friend, Ella, who also suffers from constant pain as a teenager. We try to meet up every month or so to give ourselves the opportunity to relax, and for a couple of hours, not have to pretend that we're ok. The effect of spending time with someone, whether online or in person, who gets this pain is amazing. The simple reminder that there are other people who understand what it's like to wake up and to be in so much pain you wish you hadn't, is so powerful. It's what keeps me hanging on to life, and helps me through all the challenges I face. Thank you to all my friends, both in the chronic pain community and outside of it, for keeping me going over all these years. It hasn't been easy, and without you, I wouldn't have made it past the first year of having CRPS.


I had so many other things to say tonight, but my mind has just gone completely blank! So I'll take this as a sign from my body to close up shop and curl up in bed with my cats. Love to everyone out there feeling sore and exhausted xx


Playlist

• Can't Stand The Rain - The Rescues
• The Edge of Glory - Lady GaGa
• Rolling In The Deep - Adele
• Wait - Jason Webley
• Going Home - Kim Boekbinder
• It's Love - The Jane Austen Arugment
• Talking To The Moon - Bruno Mars
• Coming Home - Gwyneth Paltrow

...

So I just reread my last blog and obviously I didn't keep to my promise of writing a new blog each week. It's now been around a month since I posted that, and I'm only just sitting down to write this. University has been…demanding to say the least, and it's been wearing me down, so I haven't really had any spoons left to do anything. But as University goes back tomorrow, I know I will be swamped with stress and assignments until June so wanted to get on top of this blog now! So here I am!

I don't have a lot of time to write this before I have dinner and then head to bed, but I wanted to talk about the latest Glee episode. The theme was "acceptance" and each member of the club had to print on a plain white shirt the thing about themselves that they find hard to accept or come to terms with. For me, my shirt would read "CRPS". I decided on that word straight away, and it got me thinking. You'd think after 6 years I would have already accepted the fact that I have this incurable nerve condition and that I'll have to live with this pain for the rest of my life, but the truth is that every morning when I wake up, I have to come to terms with it all over again. My pain threshold has definitely improved since I got CRPS, but emotionally, I still find it hard to accept that everything I had hoped to achieve in my life is now compromised by this condition. I try to tell myself that I'll still be able to do everything I had wanted to - become a music therapist, travel the world, have a family - but lately my pain has been getting in the way of everything, and I'm finding it hard to imagine having a "normal" life ever again.

I'm sure I'm not the only one who struggles with accepting the cards they have been dealt in life. Whether it's getting a condition like CRPS, or losing a close friend or family member, acceptance is something that takes a lot of work and can't been achieved over night. Heck, I've been working on it for years and I've barely made any progress. I don't want this post to sound negative - I mainly want to just let people know that you're not alone. No matter how isolated you feel, there is someone out there who understands. Tonight, I just wanted to crawl up in a ball and disappear, but friends on Facebook reminded me that I'm not alone. We're going through this together.

Dinner's ready so I best go, but I'm going to do my best to write another post in the next couple of weeks. Sorry for being so inconsistent! I find writing here so therapeutic, and although it does get me thinking about some tough things, it ultimately does help. I hope everyone's having a reasonable night, and I'm sending you some gentle, pain free hugs xox

Playlist

The Organ Donor's Heart - Kim Boekbinder

Because The Origami - 8in8

What Sarah Said - Death Cab For Cutie

Unpretty / I Feel Pretty - Lea Michele & Diana Argon

The Story - Sara Ramirez

Tinkerbell - Kim Boekbinder

Not Alone - Darren Criss

Blake Says - Amanda Palmer

Judas - Lady Gaga

Against The Night - Jason Webley

Lack of Spoons = Ugh

I have for the past week told myself that I will write a blog post, and every night I've gotten home exhausted, unable to string two words together. But this ends tonight. Exhaustion, take that!


University just finished it's 3rd week, and since I went back, I've been so tired trying to get to class, not to mention the assignments that they started throwing at us on the first day. So writing my blog has been put on the back burner, but I really miss it and I'm going to try my best to write a post a week. University is tiring for any student, but when you're dealing with chronic pain, it's an achievement to simply get out of bed in the morning, and getting around the Uni campus takes everything out of you.


The best way to explain this is Christine's The Spoon Theory (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf). For those reading this who don't know it already, it's written by a woman suffering from Lupus (a condition that gives you chronic pain), and it explains how she taught her friend about what it's really like to be sick. Using spoons, she goes through her friend's day, taking away a spoon each time she does an activity like getting showered and dressed, or getting to work, to show the amount of energy simple things take out of someone suffering from chronic pain. Around my house, I will often speak in terms of spoons to explain how I'm feeling and how my day's been, because it's so much easier to say a number, than try to explain how I actually feel.


So basically, every day I get up and get out of bed, I loose a spoon. Getting my bag packed, and getting down my path takes up another. My third spoon goes once I walk from the taxi to my lecture theatre. The effort it takes for me to stay concentrated throughout an hour's class, and take notes when I can, takes away my fourth for the day, and I've only been up for two hours. On a day when I'm more sore than usual, haven't slept, or when my medications are making me extra drowsy, an hour's class can take two or three spoons, which means that by midday, I can only have two spoons to get through the remainder of my day.


After awhile, you do learn how to conserve spoons, doing things like packing your bag or looking out your clothes the day before if you have a leftover spoon for the day, but on the whole, I'm lucky if I can make it to dinner time with enough energy to do my homework before bed. But I manage. Just like anyone else with chronic pain does. It's hard, and yes, most days, I would be much happier to stay in my pajamas all day, resting on the couch. But the way I see it, CRPS has already taken so much away from me, and if I didn't make the effort to get to University, it would take away my chance to see friends, too. People sometimes say to me that they don't know how I do it, or how any of my other friends with chronic pain do it, either. While I didn't choose to get CRPS, and if I could, I'd give it back to the Universe in a blink of an eye, I've got it now and it's not going anywhere. At least going to University gives me a little sense of normality and reminds me of the person I used to be. On some days, I like seeing a glimpse of the person I was before I got CRPS, but there are days when I get upset, thinking about who I could have been, instead of who I am now. I never imagined this was how my life would turn out, and honestly, I haven't even begun to think about how I'm going to live the rest of my life with this constant, annoying, painful companion CRPS, but I think with the support of the CRPS/RSD community, and my family & friends I'll get there. I have no other choice.


Anyway, I'm off to put more antibacterial cream on my new tattoo, and you'll hear from me next week. Promise! I'm putting it into my diary now!


Blog Playlist

• Against The Night - Jason Webley
• Sandy Fishnets - Evelyn Evelyn
• Goodbye Forever Once Again - Jason Webley
• Almost Time To Go - Jason Webley
• Bad Wine & Lemon Cake - Amanda Palmer
• A Brand New Me - Bitter Ruin
• Still - Jason Webley
• Disappear - Jason Webley
• You Only Want Me 'Cause You Want My Sister - Evelyn Evelyn
• Ways To Love - Jason Webley
• Raise Them Higher - Jason Webley
• Have To Drive - Amanda Palmer
• The Ship Song - Amanda Palmer
• Soldier - Bitter Ruin
• Last Song - Jason Webley
• Exit Music (To A Film) - Amanda Palmer

Sleep, or the lack thereof

It's 2:20am here and I'm lying in bed, unable to sleep or even get comfortable. I've always been told that I have to get at least 8 hours of sleep a night if I want to wake up refreshed and ready to face the world. But since getting CRPS, 8 hours of sleep in one night is a luxury that I no longer have. My myoclonic jerk in my leg keeps me awake and when I eventually drift off to sleep, the involuntary twitching wakes me up with the spikes of pain I get after each time it kicks out.


Unfortunately there is no magic button to press that puts you into a deep sleep, although I sure wish there was! Each time I start a new medication, they make me drowsy and offer me a chance to rest, but before long the side effects have worn off and I stay wide awake after taking them. Doctors have told me that if I were to get more sleep then I would be more able to cope with my pain the next day, but what they don't seem to remind themselves is that it's because of this pain that I can't sleep in the first place. It's a horrible vicious circle to be stuck in, and I'm sending out some happy vibes to each and everyone of you who is caught up in this, like I am.


One thing I find that helps when I can't sleep is music. I'm a singer and used to play the tenor saxophone and piano before my CRPS spread into my arm. I have always listened to music to help with my mood, whether that be to calm me down when I'm nervous, cheer me up when I'm sad, or distract me when I'm sore. Below is the playlist I listen to when I can't sleep. For those of you who listen to music also when you're unable to get to sleep, what songs to do you listen to?


My Sleep Playlist

• Viva La Vida Meets Love Story - Jon Schmidt
• Little Tornado - Aimee Mann
• The Obliviation - Alexandre Desplat
• Ampersand - Amanda Palmer
• What Sarah Said - Death Cab For Cutie
• Come Here Boy - Imogen Heap
• Christopher Lydon - The Dresden Dolls
• Staràlfur - Sigur Ròs
• The Point Of It All - Amanda Palmer
• Braille - Regina Spektor
• Falling Or Flying - Grace Potter & The Nocturnals
• Here's My Life - Barlow Girl
• Wave - All Angels Gone
• Sweet Darlin' - She & Him
• The Cure For Pain - Jon Foreman
• Beauty From Pain - Superchick
• Get Through - Mark Joseph
• Sleepyhead - Hera
• Kaleidoscope - Kate Havnevik
• The Chain - Ingrid Michaelson
• Blake Says - Amanda Palmer
• Candlelight - Imogen Heap
• Victor's Piano Solo - Danny Elfman
• I'm In Here - Sia
• Sing - The Dresden Dolls
• Hafid Thennan Dag - Hera
• Remembering Sunday - All Time Low
• Sandy Fishnets - Evelyn Evelyn
• One More Time With Feeling - Regina Spektor
• In My Time Of Need - Opeth
• Wednesday's Child - Vermillion Lies
• Speeding Cars - Imogen Heap
• Have To Drive - Amanda Palmer

A Little History For You

I figured now would be a good time to take a few moments to describe how this part of my life began.


I had finished my first term at high school and was looking forward to enjoying my 2 week break (although  I did have a huge pile of homework to complete for English & French!). However, my holiday began very differently to how I'd imagined it when I had what was later named as a seizure, at the school bus stop. Really smooth, I know. For the next term I was known around school as "that girl who fainted in front of everyone". 


I fell on my ankle and when I came to, I was unable to move my leg so was taken to the hospital to be checked out. X-rays showed that there was nothing broken, but the doctor suggested I use crutches over the weekend to give my ankle a rest. Flash forward to 4 months later, and I was still alternating between crutches and a wheelchair, unable to weight bear, and couldn't even cope with someone touching my foot or calf. Physios were baffled, I was shipped from doctor to doctor and wasn't being given anything to help the agonizing pain I felt every day. I should point out that this isn't an unusual scenario for people who develop CRPS. It still remains a condition that many doctors don't know enough about to diagnose easily. Being only 13 at the time, other doctors didn't think I could have developed CRPS as it usually affects people between the ages of 30-50.


One of the most frustrating parts of finally being diagnosed was that having a name for what was wrong with me didn't offer any solutions, short or long term. I did get put on some pain medications which meant I was able to go back to school part time, though that wasn't without its own difficulties. One of the most memorable instances was when I was first put on Tramadol and without fail 45 minutes after I'd taken it I would fall asleep. It completely freaked out one of my teachers when I fell asleep in Social Studies and wouldn't wake until the bell rang an hour later!


I speak about experiences like that humorously now, but at the time I was humiliated. That combined with the bullying I received for being "different" and "uncool" because of my wheelchair made my first year at high school a much more challenging experience that I'd imagined it would be. Looking back on it now, I'm glad I stuck it out because throughout all of my health problems (and the 4 month spell I spent in hospital when I fell into a coma), I still managed to do well academically and showed people that being physically disabled was very different to being intellectually challenged.


Anyway, 6 years down the track, I'm still struggling with my diagnosis. There are days when I feel in control of my health, and there are days when I wish I had been diagnosed with some well known condition that has a proven treatment plan and cure. But, those weren't the cards I was dealt, so instead I have to work with what I've got. I've moved from doctor to doctor, physio to occupational therapist, psychologist to psychiatrist. The diagnosis hasn't changed, except for the collection of specialists I've met with who don't believe CRPS exists. But I have grown as a person, and have met some amazing people through the CRPS online community.


Something I've always believed, and still do, is that knowledge is power. The more I learn about CRPS, the more I can share with my family, friends & doctors, and the more I can learn from other patients. We pass our knowledge and experiences onto other people and in turn they can share what they know, all in our efforts to raise CRPS awareness internationally, and help put our the fire that is CRPS/RSD.

It's Been A Long Time Coming

I've been meaning to start this blog for a long time but every time I would settle down at the computer to create an account, I couldn't seem to find the energy. But I'm here now, which is all that matters! I don't have a real plan as to what I am going to write in this blog, but as Mark says in Rent, "From here on in, I shoot without a script. See if anything comes of it." I may be writing, instead of making a film, but I feel the concept is the same. I have no specific plans for these posts, but ultimately I want to be documenting my life; which for the last 6 years has been controlled by a severe, incurable chronic pain condition I have called Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD).


I'll get into the details of this condition at a later date, but for now I'll say this: CRPS affects my right leg (from my toes to my hip), left arm and more obscurely, my eyes. The condition makes my affected limbs swell, go scaley, sport the shades of purple, yellow & red, and leaves me in agony all day. The best way to describe the pain I feel is to think of your foot having acid poured onto it, while simultaneously someone stabs you repeatedly in the same spot with a white hot dagger. Sorry for the details, I'll stop there!


One of the hardest parts of living with CRPS is that many people, including doctors, don't believe you when you describe the severity of the pain (and sometimes won't believe you're in pain at all!). Being an invisible illness, it's hard to see with the naked eye that there is in fact anything wrong with you at all. True, some of the symptoms are visible, but they don't look like they are the product of some of the worst pain you could ever feel (McGill University actually says that CRPS is the worst type of pain around!).The frustration I feel when a doctor tells me I'm exaggerating how sore I am or making it up just adds to the pain and makes it that much harder to live with.


The road I've travelled to be sitting here writing this blog hasn't been easy, and I have a long way yet to go. It's been 2,106 days already, but every day I grow that little bit stronger. And from now on, I'll be sharing my experiences here, helping to raise CRPS awareness, one blog at a time.