tag:blogger.com,1999:blog-41365582632852720072024-03-13T23:36:39.203-07:00Thoughts of a CRPS Sufferer from the Middle of NowhereJust your average teenager, living in New Zealand, suffering from a not-so-average condition; CRPS. Welcome to my world.Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-4136558263285272007.post-72006860292543394762014-07-24T00:02:00.002-07:002014-07-24T01:59:09.139-07:00Fun and Things (ft. Connie)<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <i>mine. </i>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.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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. <b>Air New Zealand</b> 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!</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">A few other exciting things we've done in the past couple of weeks:</span><br />
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<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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!)</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">On that note, shout out to the amazing <b>New Zealand School of Music</b><i style="font-weight: bold;">, </i>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 :)</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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.</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <a href="http://issuu.com/the.star/docs/214195cs?viewMode=magazine&mode=embed&layout=http%3A%2F%2Fskin.issuu.com%2Fv%2Fdark%2Flayout.xml&backgroundColor=282c41&showFlipBtn=true&proShowSidebar=false&logo=http://starnews.co.nz/images/LocalNewspapers.jpg&logoOffsetX=5&logoOffsetY=5&CTI=583110" target="_blank">here</a>. On that note, I've got a few other media gigs lined up the next weeks! More details to come once things are finalised</span></li>
<li><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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!</span></li>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <a href="https://www.facebook.com/WellingtonCityMarket" target="_blank">Wellington City Market</a> 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 <a href="https://www.facebook.com/pages/Assistance-Dogs-New-Zealand/223270277705513?fref=ts" target="_blank">ADNZ Facebook page</a></span></div>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-h6hNup-yuF0/U9CvfK369nI/AAAAAAAAAoo/aEtpRI8EULU/s1600/Connie_Auckland.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-h6hNup-yuF0/U9CvfK369nI/AAAAAAAAAoo/aEtpRI8EULU/s1600/Connie_Auckland.png" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Connie's Auckland Adventures</td></tr>
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Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com2tag:blogger.com,1999:blog-4136558263285272007.post-89498872488635057092014-07-05T18:30:00.002-07:002014-07-05T18:30:39.331-07:00Up, Up and Away<span style="font-family: Arial, Helvetica, sans-serif;">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 any<i>one</i>, 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. </span><span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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:</span><br />
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<li><span style="font-family: Arial, Helvetica, sans-serif;">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.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">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.</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">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 <b>Embassy Theatre, Wellington</b>, 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!</span></li>
<li><span style="font-family: Arial, Helvetica, sans-serif;">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.</span></li>
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<span style="font-family: Arial, Helvetica, sans-serif;">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 <b>Fidel's</b> and <b>Milk & Honey</b>, who are two places that have been exemplary in their accommodation and service for me and my dog.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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 ;)</span></div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-Waw4OIZNy7s/U7il_JAsOsI/AAAAAAAAAnY/5W_WgE2N3J4/s1600/Bed_June.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-Waw4OIZNy7s/U7il_JAsOsI/AAAAAAAAAnY/5W_WgE2N3J4/s1600/Bed_June.png" height="300" width="400" /></a></td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-yolspeJCNYU/U7il_5H7FHI/AAAAAAAAAng/_MTB5PMJlfI/s1600/Heaters_June.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-yolspeJCNYU/U7il_5H7FHI/AAAAAAAAAng/_MTB5PMJlfI/s1600/Heaters_June.png" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This winter has been pretty cold so far, so Connie is finding heaters everywhere!</td></tr>
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-nPZFaQdIN-Y/U7il_QqGjcI/AAAAAAAAAnc/kcur9ZK6Llo/s1600/Kapiti_July5th_1.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-nPZFaQdIN-Y/U7il_QqGjcI/AAAAAAAAAnc/kcur9ZK6Llo/s1600/Kapiti_July5th_1.png" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kapiti Adventure - July 5th 2014</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kapiti Adventure - July 5th 2014</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-wLMoxWOofYI/U7imBfU6TjI/AAAAAAAAAn0/c7yqbAOxJXY/s1600/Kapiti_June28th.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-wLMoxWOofYI/U7imBfU6TjI/AAAAAAAAAn0/c7yqbAOxJXY/s1600/Kapiti_June28th.png" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kapiti Adventure - June 28th 2014</td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-rGdnYPGJtWU/U7imDsrE_2I/AAAAAAAAAoE/BD5poz8Pf0I/s1600/Outandabout_June.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-rGdnYPGJtWU/U7imDsrE_2I/AAAAAAAAAoE/BD5poz8Pf0I/s1600/Outandabout_June.png" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Out and about in Wellington</td></tr>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-LklqQOWWuag/U7imDTnyw3I/AAAAAAAAAoA/JdTWPHqBX0Y/s1600/Sleeping_June.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-LklqQOWWuag/U7imDTnyw3I/AAAAAAAAAoA/JdTWPHqBX0Y/s1600/Sleeping_June.png" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping</td></tr>
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Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com3tag:blogger.com,1999:blog-4136558263285272007.post-31598583251661965132014-05-27T02:27:00.000-07:002014-05-27T03:45:35.010-07:00Introducing Connie!<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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 :)</span><br />
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<a href="https://givealittle.co.nz/cause/ailsalipscombe" rel="nofollow nofollow" style="background-color: white; color: #3b5998; cursor: pointer; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-decoration: none;" target="_blank">https://givealittle.co.nz/cause/ailsalipscombe</a><span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;"> </span><br />
<a href="http://www.assistancedogstrust.org.nz/index.php/donate-now" rel="nofollow nofollow" style="background-color: white; color: #3b5998; cursor: pointer; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-decoration: none;" target="_blank">http://www.assistancedogstrust.org.nz/index.php/donate-now</a><br />
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<tr><td class="tr-caption" style="text-align: center;">Connie on the couch :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Hard at work at University!</td></tr>
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-9ccbqTCUAcE/U4RYadRmT-I/AAAAAAAAAlI/KManilymOlo/s1600/IMG_20140510_104517.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-9ccbqTCUAcE/U4RYadRmT-I/AAAAAAAAAlI/KManilymOlo/s1600/IMG_20140510_104517.jpg" height="200" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Riding in the car</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-1D1K83mZG-Q/U4RYbm8s1sI/AAAAAAAAAlQ/Aaubvb9fPWw/s1600/IMG_20140510_155831.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-1D1K83mZG-Q/U4RYbm8s1sI/AAAAAAAAAlQ/Aaubvb9fPWw/s1600/IMG_20140510_155831.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Studying together!</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-e-me6LcoeGw/U4RYdMGRJAI/AAAAAAAAAlY/_zV0oGv3Mec/s1600/IMG_20140511_171230.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-e-me6LcoeGw/U4RYdMGRJAI/AAAAAAAAAlY/_zV0oGv3Mec/s1600/IMG_20140511_171230.jpg" height="200" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing at school</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-_q-WQBwWJmY/U4RYcp6u6mI/AAAAAAAAAlU/w2MQts0Qvoo/s1600/IMG_20140520_195735.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-_q-WQBwWJmY/U4RYcp6u6mI/AAAAAAAAAlU/w2MQts0Qvoo/s1600/IMG_20140520_195735.jpg" height="200" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Knackered!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-CQpmAfNaNxA/U4RYfMmQ7BI/AAAAAAAAAlk/8yCIEuEvXMA/s1600/IMG_20140520_200016.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-CQpmAfNaNxA/U4RYfMmQ7BI/AAAAAAAAAlk/8yCIEuEvXMA/s1600/IMG_20140520_200016.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evening nap</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Ise6ZB_QOzs/U4RYi2kdLbI/AAAAAAAAAlo/ZNm49_k9Y-Q/s1600/IMG_0232.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-Ise6ZB_QOzs/U4RYi2kdLbI/AAAAAAAAAlo/ZNm49_k9Y-Q/s1600/IMG_0232.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing in the park</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-vFvJmKvw8pY/U4RYmKIGpUI/AAAAAAAAAls/S3yp8UXgYbs/s1600/IMG_0255.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-vFvJmKvw8pY/U4RYmKIGpUI/AAAAAAAAAls/S3yp8UXgYbs/s1600/IMG_0255.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Park!</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-ksgRJ3qZTt4/U4RYpJJ0TYI/AAAAAAAAAlw/3DdWjAz5KMM/s1600/IMG_0267.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-ksgRJ3qZTt4/U4RYpJJ0TYI/AAAAAAAAAlw/3DdWjAz5KMM/s1600/IMG_0267.JPG" height="400" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happiest dog ever!!!</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-k4zKv6OzqQA/U4RYt4c3GCI/AAAAAAAAAl0/l44dgqies_w/s1600/IMG_0274.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-k4zKv6OzqQA/U4RYt4c3GCI/AAAAAAAAAl0/l44dgqies_w/s1600/IMG_0274.JPG" height="200" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Running hard!</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-yAFakFfBJP0/U4RYxCF0OXI/AAAAAAAAAl4/gUhOKjbk9Uw/s1600/IMG_0289.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-yAFakFfBJP0/U4RYxCF0OXI/AAAAAAAAAl4/gUhOKjbk9Uw/s1600/IMG_0289.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Mum! Where's the ball?"</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-6n_vGK5y074/U4RY6x_j-aI/AAAAAAAAAmA/t-RXxtTkxig/s1600/IMG_0301.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-6n_vGK5y074/U4RY6x_j-aI/AAAAAAAAAmA/t-RXxtTkxig/s1600/IMG_0301.JPG" height="200" width="133" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Running</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-AqU_RM3XG30/U4RY6dk7rOI/AAAAAAAAAl8/dKXE22aX5Xs/s1600/IMG_0303.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-AqU_RM3XG30/U4RY6dk7rOI/AAAAAAAAAl8/dKXE22aX5Xs/s1600/IMG_0303.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tired out :)</td></tr>
</tbody></table>
<br />
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<br />
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.<br />
<br />
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 :)Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com0tag:blogger.com,1999:blog-4136558263285272007.post-8274221441050264272012-01-11T00:23:00.000-08:002012-01-11T20:00:58.959-08:00Frustration Aplenty<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>my</i> 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, <i>enjoying</i> life. That's the life I was expecting to live, not this. There's a line in the song "<i>I Dreamed A Dream</i>" that reads "<span class="Apple-style-span">I had a dream my life would be, s</span><span class="Apple-style-span">o different from this hell I'm living". Well, ain't that the truth!</span></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>real</i> people.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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</span>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com4Wellington, New Zealand-41.2864603 174.776236-41.4773693 174.46037900000002 -41.095551300000004 175.092093tag:blogger.com,1999:blog-4136558263285272007.post-8188396251480697152011-12-06T17:21:00.001-08:002011-12-07T12:58:21.423-08:00Dear Twelve-Year-Old Me,<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Dear twelve-year-old me,<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.</span><br />
<div>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />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.<br /><br />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.<br /><br />Love, Your Future Self.</span></div>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com6tag:blogger.com,1999:blog-4136558263285272007.post-18666912640057832142011-09-30T19:05:00.000-07:002011-10-01T01:27:53.224-07:00So Much To Do, So Little Energy & Time<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>be</i> and then I'll see if I'm up to doing some study.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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).</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><u>Playlist</u></span><br />
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<ul>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Set Fire To The Rain - Adele</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Bring On The Wonder - Sarah McLachlan</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">The Story - Brandi Carlile</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Get Through - Mark Joseph</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">The Chain - Ingrid Michaelson</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Scream - ZOEgirl</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Long Red Hair - Vermillion Lies</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">One More Time With Feeling - Regina Spektor</span></li>
</ul>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com1Wellington, New Zealand-41.290189955885623 174.77325439453125-41.385634455885622 174.61532589453125 -41.194745455885624 174.93118289453125tag:blogger.com,1999:blog-4136558263285272007.post-49765396505847137992011-09-02T22:01:00.000-07:002011-09-02T22:01:52.786-07:00A Letter To CRPS<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Dear CRPS,</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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, <i>you</i> 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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I've lost so much since getting CRPS - my freedom, being able to play the saxophone, going out with friends, playing golf, <i>sleeping!</i> 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 <i>able </i>to live. Part of me hates you, CRPS.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Until then, yours sincerely,</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Ailsa.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><u>Playlist</u></span><br />
<br />
<ul>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Someone Like You - Adele</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Coming Home - Skylar Grey</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Wait - Jason Webley</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Sandy Fishnets - Evelyn Evelyn</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Blessed Be Your Name - Newsboys</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Not Alone - Darren Criss</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Death Whispered A Lullaby - Opeth</span></li>
</ul>
Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com2Wellington, New Zealand-41.2924945 174.7732353-41.387938999999996 174.6153068 -41.19705 174.9311638tag:blogger.com,1999:blog-4136558263285272007.post-37100435623562718452011-08-20T02:43:00.000-07:002011-08-20T02:44:50.373-07:00A Quick Update<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">It was amazing, to say the least! Hanging out with someone who truly knows </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <a href="http://crpsretreat.blogspot.com/">here</a>.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"><u>Playlist</u></span><br />
<br />
<ul><li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Stealing Happiness - Gin Wigmore</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Paris - Hera</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Scream - ZOEgirl</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">I Wish I Was The Moon - Neko Case</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">The Chain - Ingrid Michaelson</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Wait - Jason Webley</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">In The Dress - Hera</span></li>
</ul>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com5tag:blogger.com,1999:blog-4136558263285272007.post-60145722899190720852011-07-15T22:41:00.000-07:002011-07-15T22:43:13.423-07:00Dear Mr Potter<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Dear Mr Potter,<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Ailsa, 19.<br />
Ravenclaw.</span>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com2tag:blogger.com,1999:blog-4136558263285272007.post-34652868378289626572011-07-08T04:25:00.000-07:002011-07-08T04:25:10.553-07:00Lots of Links<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">1. </span><a href="http://www.conceptispuzzles.com/"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Conceptis Puzzles</span></a><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.conceptispuzzles.com/"></a>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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">2. </span><a href="http://www.deargirlsaboveme.com/"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Dear Girls Above Me</span></a><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><a href="http://www.deargirlsaboveme.com/"></a>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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">3. </span><a href="http://www.facebook.com/"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Facebook</span></a><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">4. </span><a href="http://www.youtube.com/watch?v=coR3JtCeBqk"><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Making YouTube Videos</span></a><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Anyway, I hope that something there can make you smile, or help you get through a long, sleepless night xx</span>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com0tag:blogger.com,1999:blog-4136558263285272007.post-75574603433705137162011-07-08T04:11:00.000-07:002011-07-08T04:11:30.319-07:00I Really Suck At This Time Management Thing<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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?</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>gets</i> 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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;"><u>Playlist</u></span></span><br />
<br />
<ul><li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Can't Stand The Rain - The Rescues</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">The Edge of Glory - Lady GaGa</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Rolling In The Deep - Adele</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Wait - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Going Home - Kim Boekbinder</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">It's Love - The Jane Austen Arugment</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Talking To The Moon - Bruno Mars</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Coming Home - Gwyneth Paltrow</span></span></li>
</ul>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com0tag:blogger.com,1999:blog-4136558263285272007.post-69137028366937496452011-05-01T00:35:00.000-07:002011-05-01T00:35:34.402-07:00...<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>anything</i>. 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!</span><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>is</i> 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.</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 </span><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">xox</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;"><u>Playlist</u></span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;"><br />
</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">The Organ Donor's Heart - Kim Boekbinder</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Because The Origami - 8in8</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">What Sarah Said - Death Cab For Cutie</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Unpretty / I Feel Pretty - Lea Michele & Diana Argon</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">The Story - Sara Ramirez</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Tinkerbell - Kim Boekbinder</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Not Alone - Darren Criss</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Blake Says - Amanda Palmer</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Judas - Lady Gaga</span></span></div><div><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Against The Night - Jason Webley</span></span></div>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com0tag:blogger.com,1999:blog-4136558263285272007.post-19702116131148633182011-03-20T02:06:00.000-07:002011-03-20T15:05:05.010-07:00Lack of Spoons = Ugh<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The best way to explain this is Christine's <i>The Spoon Theory </i>(<a href="http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf">http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf</a>). 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.</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><u><span class="Apple-style-span" style="font-size: x-small;">Blog Playlist</span></u></span><br />
<ul><li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Against The Night - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Sandy Fishnets - Evelyn Evelyn</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Goodbye Forever Once Again - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Almost Time To Go - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Bad Wine & Lemon Cake - Amanda Palmer</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">A Brand New Me - Bitter Ruin</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Still - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Disappear - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">You Only Want Me 'Cause You Want My Sister - Evelyn Evelyn</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Ways To Love - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Raise Them Higher - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Have To Drive - Amanda Palmer</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">The Ship Song - Amanda Palmer</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Soldier - Bitter Ruin</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Last Song - Jason Webley</span></span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><span class="Apple-style-span" style="font-size: x-small;">Exit Music (To A Film) - Amanda Palmer</span></span></li>
</ul>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com4tag:blogger.com,1999:blog-4136558263285272007.post-61740452836519999752011-02-05T05:35:00.000-08:002011-02-05T05:35:30.988-08:00Sleep, or the lack thereof<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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?</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><b><u>My Sleep Playlist</u></b></span><br />
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<ul><li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Viva La Vida Meets Love Story - Jon Schmidt</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Little Tornado - Aimee Mann</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The Obliviation - Alexandre Desplat</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Ampersand - Amanda Palmer</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">What Sarah Said - Death Cab For Cutie</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Come Here Boy - Imogen Heap</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Christopher Lydon - The Dresden Dolls</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Staràlfur - Sigur Ròs</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The Point Of It All - Amanda Palmer</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Braille - Regina Spektor</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Falling Or Flying - Grace Potter & The Nocturnals</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Here's My Life - Barlow Girl</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Wave - All Angels Gone</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Sweet Darlin' - She & Him</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The Cure For Pain - Jon Foreman</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Beauty From Pain - Superchick</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Get Through - Mark Joseph</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Sleepyhead - Hera</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Kaleidoscope - Kate Havnevik</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">The Chain - Ingrid Michaelson</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Blake Says - Amanda Palmer</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Candlelight - Imogen Heap</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Victor's Piano Solo - Danny Elfman</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I'm In Here - Sia</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Sing - The Dresden Dolls</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Hafid Thennan Dag - Hera</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Remembering Sunday - All Time Low</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Sandy Fishnets - Evelyn Evelyn</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">One More Time With Feeling - Regina Spektor</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">In My Time Of Need - Opeth</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Wednesday's Child - Vermillion Lies</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Speeding Cars - Imogen Heap</span></li>
<li><span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Have To Drive - Amanda Palmer</span></li>
</ul>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com0tag:blogger.com,1999:blog-4136558263285272007.post-81014048288945850922011-01-25T01:23:00.000-08:002011-01-25T01:23:36.922-08:00A Little History For You<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I figured now would be a good time to take a few moments to describe how this part of my life began.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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". </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
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</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com1tag:blogger.com,1999:blog-4136558263285272007.post-11177950211275193662011-01-19T04:30:00.000-08:002011-01-19T22:29:47.979-08:00It's Been A Long Time Coming<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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 <i>Complex Regional Pain Syndrome </i>(CRPS) or <i>Reflex Sympathetic Dystrophy </i>(RSD).</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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!</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;"><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">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.</span>Anonymoushttp://www.blogger.com/profile/10987793458106493813noreply@blogger.com1