Over the last couple of weeks I've been extremely busy, with the end of this half of the trimester, going up to Auckland for my Grandma's 80th birthday and meeting up with my friend Kylee, who is a fellow CRPS sufferer. We have been Facebook friends for a few years now, and last year we passed each other in the waiting room at Auckland Hospital, but this was the first time we'd properly hung out together.
It was amazing, to say the least! Hanging out with someone who truly knows what it's like to live with this awful disease was so incredible. What began as going out for afternoon tea on Saturday, turned into going to Church together and then lunch on Sunday, and then because of the snow and the fact that all roads out of Wellington were closed, Kylee, her friends Amie and Roxanna, and myself went off to Te Papa for the day on Monday. By the end of these three days I was exhausted and my body was pleading for me to slow down but it was totally worth it. We got some awesome photos together, which will always remind me of the great time we spent together, and will help keep me smiling even on the bad days.
This afternoon I talked on the phone with Caren, another friend of mine with CRPS and even though we'd only ever talked to each other online before, we talked like old friends! It was brilliant being able to compare stories of doctors, medications and the complexities of life with CRPS. I can't explain what a joy it is being able to talk to someone who knows exactly what it's like to live in this amount of pain and yet still try to be "normal". Caren and I are planning to meet up for coffee in a fortnight which is going to be awesome - something I've learnt is that it's really important to have something to look forward to to help get you through the long nights when you can't sleep.
On the subject of things to look forward to, one of my best friends Kaylee and I are planning a CRPS Retreat for 2013/2014. We don't have any finalized plans yet, but so far we know that it's going to be in California and will be for people living with CRPS and their families. You can read more about it on our other blog here.
My leg has been spasming for the last 10 minutes and won't stop, so I'm going to take that as a sign that I should take my leave, take my evening meds, and hope to get a little rest. I hope to be back writing here more regularly now that I'm on University break and will have a little bit more time on my hands. xx Ailsa xx
Playlist
- Stealing Happiness - Gin Wigmore
- Paris - Hera
- Scream - ZOEgirl
- I Wish I Was The Moon - Neko Case
- The Chain - Ingrid Michaelson
- Wait - Jason Webley
- In The Dress - Hera
Hera!! That's the girl that played with Amanda Palmer eh? She's awesome.
ReplyDeleteI met Caren the other day (well, I assume we're talking about the same people) and she is so lovely and she makes the most amazing head pieces (I've forgotten what they're called, but they're beautiful!!)
I'm glad you had fun with us, it was such a good time for me too. You should let me know if you're coming into town during the holidays and we could meet up!
Thanks Amie :) Yep, Hera is the one who opened for Amanda Palmer - she's absolutely amazing! I have all of her CDs so when we catch up next I'll bring you some stuff on a memory stick!
ReplyDeleteWe are talking about the same Caren! Are the head pieces called fascinators? (I have no idea if I spelt that right!) She was so lovely to speak to on the phone and I can't wait to meet up with her in person. It was brilliant hanging out with you and Kylee and yes, I'd definitely like to meet up during the break!! That would be awesome :)
Ooh yes, fascinators!! But then that kind of has a negative image for me, cos of those hideous things Beatrice and Eugenie were wearing at the royal wedding (am I meant to capitalise that? Royal Wedding? I dunno)
ReplyDeleteYay Hera!
I'm going to be in Taupo or busy until the 30th, but after that just FB me and we'll hang out!
Your blog thinks I'm a spammer! Waah! :(
ReplyDeleteAfter the 30th sounds good for me :) I can't believe my blog thinks you're a spammer. I'm going to have to give it a stern talking to!!!!
ReplyDelete