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