Introducing Connie!

Well what a time I've been having! My Assistance Dog Connie arrived three weeks ago and what a roller-coaster it's been! I've never had a dog before, having grown up with two cats (one of whom is still with us) so getting a dog has been a learning experience - at times a little overwhelming but for the most part absolutely incredible. After a few spontaneous fits of tears in the first week, things have now settled down and Connie and I have found our rhythm. The amazing trainer from Assistance Dogs New Zealand, Julie, has made the experience smooth and as easy as possible, and I'm constantly in awe of how well trained these dogs are.

In the weeks since I got Connie I have learnt so much and we've done so much together already. I graduated with my Bachelor of Music with first class honours, and with Connie's support and anchoring I was able to walk across the stage without my crutches. With Connie's support and navigating skills, I am able to walk up and down stairs without the fear of falling. Before working with my service dog, I was at constant risk of falling down stairs, tripping over curbs, and falling over dips in the road, due to my failing eyesight thanks to CRPS. Walking around now with Connie, I can feel my confidence increasing. I no longer have to worry that I'll break a bone on my way to class, or having to text a friend to rescue me at the crossing because I don't know when to cross. I can feel my independence rising every day that I leave the house with my service dog at my side. Moving around is still difficult for me and I feel like I have been pushing it a bit too hard these past few weeks in an effort to work outside the house with Connie as much as possible. It's going to take me a little while longer to find that balance of doing exciting new things with my dog, and also looking after my limits and respecting my low energy levels.

Yesterday, I went to the park with three other Wellington families who have service dogs from Assistance Dogs New Zealand. Although I was exhausted afterwards, the experience was absolutely amazing. Seeing our dogs interacting and playing together but also observing how well they followed our commands, even without their harnesses on, was awesome, and I was so proud watching Connie do everything Julie and I asked of her. As we were making our way back to the car, I was (unknowingly) walking towards a big dip in the grass. As we approached it, I could feel Connie start moving me to the left, with no idea why she was trying to swerve (as she's taught to walk in a straight line). Trusting my dog, I went with her and as we walked forward I realized that she had just saved me from falling over. Previously, I would have gone down into that hole, and due to my low bone density thanks to the CRPS, I would have likely have broken one or more toes or fingers in the process. Experiences like these that may seem so small and insignificant to others are making a world of difference in my life. 

When I graduated, the stage was so bright and long, I couldn't see a thing. I told Connie to continue straight on, and trusted that she would take me where I needed to go. She took me directly to the Chancellor who shook my hand and greeted my dog, and then telling Connie a gentle "to the end" she took me up to the representative from my faculty who handed me my degree. With no idea where to turn next I asked Connie to find the stairs and without hesitation Connie walked me to the stairs to get off the stage and halted to let me know I needed to step down. Connie and I had been together 6 days when this happened. I still can't believe how amazingly she is trained, how perfect she is for attending to my needs, and how quickly our bond has grown.

There are no words to express how grateful I am for having Connie become a part of my life. Assistance Dogs New Zealand were set up as a charity to support New Zealanders with disabilities who would benefit from a service dog and the work they are doing is invaluable for people like myself. Friends and family have commented on how I'm a different person now Connie is with me, and I'm sure that things will only continue to improve the longer we work together. I know I have asked before, but I'll do it again. If you can financially help in any way, ADNZ and myself would be so grateful for your support. They are run solely from donations and your help means that new puppies are able to be trained to support New Zealanders with a variety of disabilities and needs. You can donate through my fundraiser, or through their website. Links below :)

https://givealittle.co.nz/cause/ailsalipscombe 
http://www.assistancedogstrust.org.nz/index.php/donate-now

Connie on the couch :)

Hard at work at University!

Riding in the car

Studying together!

Playing at school

Knackered!

Evening nap

Playing in the park

Park!

Happiest dog ever!!!

Running hard!

"Mum! Where's the ball?"

Running

Tired out :)

And a new chapter begins...

Wow, I can't believe it's been two years since I last posted. Time has flown by and so much has happened since. For those that follow me on Facebook, you'' know that the past few years have been filled with highs and lows and a lot of crazy experiences.

I thought now was a good time to resurrect this blog as next week a new addition is coming into my life who is going to change everything. A few years ago I started researching Assistance Dogs and started the process of applying for one. I was accepted into the program by Assistance Dogs New Zealand, an awesome organization that trains dogs for New Zealanders with disabilities. (Check out their website here: http://www.assistancedogstrust.org.nz). They are run off donations and do an amazing job improving the lives of New Zealanders with a whole range of disabilities.

I received a phone call on Monday to say that my Assistance Dog, Connie, is ready to move into my house. I still can't really believe it. I'm so excited to start training with her and to see where our lives will take us.  I'll hopefully do a new post once she's here to update y'all on how things are going and how she's settling in :)

Frustration Aplenty

When it comes to being sick, the pain is the most obvious cause of frustration. Not just the pain but what it does to your body - the dystonia, the muscle deterioration. Things you used to be able to do with ease and never gave a second thought to become much harder, or even impossible. Imagine it taking 40 minutes to walk up your path - some days, it can take me an hour. Imagine having to rely on other people to cut up your food because you're not able to use both a knife and a fork at the same time - my left hand can't grip at all, so I can only eat with a fork or a spoon. Imagine waking up in the morning, and not knowing whether you're going to be able to walk, whether your legs are going to give out underneath you, whether you're going to be able to weight bear at all. Welcome to a life with RSD/CRPS.


But one of the things I find most frustrating is watching my life go by me and not having the energy to keep up. When I first got CRPS I was 13, so I have lived my entire adolescent life in chronic pain. I have watched my friends grow up, move out of home, travel throughout the country and overseas and gain their independence, while I have sat on the sidelines, with no way to keep up. I try to make plans to go out and see friends, but when living with a chronic illness, it's impossible to predict how you're going to feel on a particular day, so you never know if you're going to be up to going out or not. As a teenager with chronic pain, I've gotten used to not seeing friends, or not being able to go to a certain event or party. But that's not to say that it doesn't hurt each time you see the photos of some outing or another that you couldn't attend, or that you stop having that pang of jealousy each time you hear about something you couldn't take part in. Tonight my best friend organised a group of us to go out and have drinks, and I've been looking forward to it all week. This morning, my pain was high but I thought I'd be fine to go out for a short period of time. Come 7:30pm, I'm curled up on the couch, trying not to cry and barely able to move around the house, let alone go down my path and into town. So here I am, lying in bed, alone, while my friends meet up in town.


Now, I don't want this post to sound resentful or angry. I'm not. I don't resent my friends going out and having fun. I don't expect people's lives to stop because I'm sick. But I can't help feeling like my life has stopped because I'm sick, and everyone else has continued moving onwards. My days are structured around physio exercises, appointments, and doing my best to hold it all together and not break down. I'm 19 - a 19 year old should be moving out of home, planning a life after University, enjoying life. That's the life I was expecting to live, not this. There's a line in the song "I Dreamed A Dream" that reads "I had a dream my life would be, so different from this hell I'm living". Well, ain't that the truth!


On a more positive note, I'm currently in the middle of creating another RSD/CRPS Awareness video. My idea for this one is to show the many different faces of this condition - in between slides with information on them will be pictures of many of the amazing people I have met who are living with RSD/CRPS. If you want to be a part of this video, email your photos to me at ailsa.lipscombe@gmail.com. I'm interested in getting photos of people looking "normal" (that's to say, looking "well"), as well as photos that show you and your CRPS. That could mean that you're photographed with your crutches, wheelchair, swelling, discoloration, etc. Maybe a photo of you and your daily meds. Anything, really! The purpose of this video is to get information out about RSD/CRPS, while at the same time putting a face to our condition, showing that anybody can get this disease and that we're all real people.


My hands are cramping up so I best get going. Will update again in the next few days when I've got the energy xox

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