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

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