Fun and Things (ft. Connie)

One of the most frustrating things about being chronically ill is that when you get "normal person" sick (read: flu, cold, cough, etc), it hits you so much harder. Battling with compromised immunity, not enough sleep, and ridiculously low energy, means that throw a cold into the mix and you've got a recipe for utter exhaustion. So I have spent the day in pajamas, alternating between doing University readings and watching American Horror Story, while cuddling with my cat and dog. Those who know me will know that I don't usually take days off even when I'm sick - I usually just push through and try to maintain the same level of activity as usual. But I'm trying a new strategy. I can't afford to get really sick these next few weeks as I have millions of deadlines and tasks to get done for grad school, so in the meantime I'm trying the "give myself 24 hours off" strategy to see if that will kick this cough and overall achy-ness to the curb.

Despite not feeling on top of my game right now, the past few weeks have been full of lots of exciting moments and excursions. I can't verbalise just how much happier and confident I feel leaving the house with Connie next to me. The freedom she gives me is amazing and I could never have imagined just how quickly she would change my life for the better. I was chatting with a friend the other day about the ways having a service dog has changed things. On the whole, it's been an amazing experience and I don't regret it for a single minute. In saying that, I don't think I could have known how much work it would be until Connie was living with me and mine. Small things, like having to carry dog treats or dog bags around with me, or not being able to study at my desk for 8 hours straight, as she needs to be taken out for bathroom breaks. These are the sorts of things I've "learnt on the job. And don't get me wrong - it's COMPLETELY worth it. But it's definitely been a learning experience. I definitely feel like we have a good routine now and we've settled into each other's lives really well.

Speaking of learning experiences, a few weeks ago I went away to Auckland with Connie and my Mum, to visit my Grandma, who lives in a retirement village up there. It was so awesome being able to introduce my Grandma to Connie - she'd seen lots of photos of her and we talk on the phone every day, so she'd heard HEAPS of stories, but it was great being able to introduce them in person. The joy on my Grandma's face made it so worth it. To get there, we flew. It was Connie's first time on a plane, and my first time flying with a dog. Air New Zealand were fantastic - so supportive and made the whole process super easy. We alerted them ahead of time that we were bringing an assistance dog with us (they have a special form you have to fill out the first time round that is then filed, so every time I book tickets with them, they know that Connie will be there too.) They gave us a free seat so that Connie had more room on the plane, and had us board early so that we had time to get settled. On our way to Auckland, Connie lay perfectly still during take off (we had been told that she may stand up.) I gave her a few treats to chew so that her ears wouldn't block and she seemed fine. About half way through the journey, as people were moving around the aisle she thought that maybe she'd like to join them, so tried to get up and go wandering. I managed to settle her down and she lay across my legs and rested her head on my Mum's foot. She stayed this way for the remainder of the journey, and let me tell you, as we walked off the plane, her tail was wagging and she had her "I did real good" face on! Our journey back to Wellington was really uneventful. She happily walked onto the plane, settled down, and slept for the whole flight. I was so proud of her <3 One thing I did learn about traveling with a service dog is it's really handy to check out dog parks before you head off. Thankfully, as we used to live in Auckland, Mum knew a few places we could take Connie for a run around, but we didn't have any wet-weather options, and it ended up raining every day we were there. Definitely one thing to remember to plain in advance next time I travel!

A few other exciting things we've done in the past couple of weeks:

• Connie attended her first seminar classes at university. My lecturer was great and got me to introduce her during the first class, and also explain what the rules around service dogs are. I knew some of the students already but not all of them, so it was awesome getting the chance to explain outright how to treat Connie and means I'm much less worried about people trying to interact with Connie while she's working. She seems to be enjoying the class so far (and by enjoying, I mean she sleeps the whole time at my feet and doesn't seem to mind the noise of everyone talking and musical examples!)
• On that note, shout out to the amazing New Zealand School of Music, who have been so accommodating of Connie and I. Everyone has been so amazing, so respectful of service dog etiquette, and so supportive. I wouldn't have gotten to my Master's without their support and their attitude since getting Connie has been awesome :)
• Connie and our 19 year old cat Milly have decided that they'll be friends. Connie's pretty happy about that! She's been trying since day one to cuddle with Milly and in the past few weeks Milly has been getting up onto Connie's blanket on the couch and snuggling up. It's probably been brought on by the cold weather here in Wellington but it's great to see the cat becoming more comfortable around Connie.
• The local newspaper featured a story on Connie and I, and my fundraiser for Assistance Dogs New Zealand. The response has been great. You can read the story here. On that note, I've got a few other media gigs lined up the next weeks! More details to come once things are finalised
• Connie received her first wedding invitation! My cousin's getting married in Hamilton and the invitation was addressed to my family "and Connie." I was so stoked that she was mentioned :) While in Hamilton, I'm also going to be able to meet Connie's puppy-raising family!

August 3rd-August 9th is International Assistance Dogs Week (IADW.) As part of this week, Assistance Dogs New Zealand will be running their annual street appeal, which I'll be participating in here in Wellington. You can catch me and Connie at Chaffers New World in town on Saturday 9th, along with some other families and their assistance dogs. I'll also be at the Wellington City Market on Herd Street on Sunday 10th. It would be awesome to see some of you there :) There's fundraising happening all around the country so you can check out what's happening in your area on the ADNZ Facebook page

Connie's Auckland Adventures

Up, Up and Away

People ask me what the past two months have been like, since Connie came into my life. Whenever I'm asked this, I struggle to find an appropriate answer. How do you find the words to describe something so life changing? Every day I'm reminded how lucky I am to have such an amazing service dog by my side, and there are no words to accurately and aptly explain how this beautiful dog has transformed my life. It's hard to put into words how much more confident I feel leaving the house with Connie leading the way. I never realised how much energy I used making sure I didn't walk into anything, or anyone, or trip on curbs, or miss a step. It's only now that I no longer have to do that all the time that I realise how much of my energy and brain power was going into those small tasks, stopping me from enjoying being out and about. It's revelations like these that show to me, my family, my friends, and my community, how much my service dog has already changed my life.

Now that I feel more confident and comfortable leaving the house, Connie and I have been having quite a few adventures as of late, alongside my friends and family. Going out is still very tiring for me, and never fails to increase my pain and allodynia. But some of the mental exhaustion is now reduced thanks to Connie's help, and being less at risk for falling over and breaking bones of course reduces any extra pain I have to deal with. Some of the things we have done together so far are:

• An awesome train ride out to Kapiti Coast with two of my best friends. It was Connie's first time on a train with me, and she did really well. When we got to Kapiti, we visited my friend Emily's grandparents, which was lovely, and then spent a few hours on the beach, where Connie was very happy to have her jacket taken off so she could bound about and play in the sand.
• A puppy play date with two friends' dogs. In the pouring rain. And howling wind. The dogs didn't mind in the slightest. We, however, were rather cold, and I definitely paid the next day from being out in such gross weather.
• 3 movie visits (The Fault In Our Stars, and What We Do In The Shadows [twice!]). I have been blown away how calm and well behaved Connie is while at the movies. She just curls up at my feet and goes to sleep! Special shout out to Embassy Theatre, Wellington, who both times I've been there have given me an extra seats on either side of us for free so that Connie has more room!
• A Tiny Ruins concert (which was awesome). Despite it being late on a Friday night, Connie was extremely well behaved and was super still for the whole show.

On top of these events, countless hours have been spent at University - both in my office and in classes - and Connie has continued to show everyone how great she is by helping navigate me through busy corridors, and sit quietly on her mat while I work at my desk. Connie's also becoming quite the cafe-goer in Wellington - special mention to Fidel's and Milk & Honey, who are two places that have been exemplary in their accommodation and service for me and my dog.

Tomorrow Connie and I are off to Auckland with my Mum to visit my grandma. To say she's excited to meet Connie would be the understatement of the century! It will be Connie's first time on a plane and I'm a little nervous, but Air New Zealand have been great in the lead up and organisation side of things. It will be so great to see my grandma, as I haven't seen her since before I went to New York in January, so it will be lovely to catch up and for me to be able to show her all the photos from my travels this year!

Final word: I've got a few media projects on the go at the moment which are aiming to help raise awareness of Assistance Dogs New Zealand, as well as my own fundraiser to help pay for Connie. I'll update here when I know more specific details ;)

Cuddles on the bed

This winter has been pretty cold so far, so Connie is finding heaters everywhere!

Kapiti Adventure - July 5th 2014

Kapiti Adventure - July 5th 2014

Kapiti Adventure - June 28th 2014

Out and about in Wellington

Sleeping

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