When Creina, Jim and Jezebel came to stay!

As much as CRPS/RSD is simply a big load of BS, the thing that I am so grateful for I the friends that I have made all because I have this horrible nerve disease. It’s easy to get bogged down in the bad stuff, but there is no denying that because of Facebook, I have met some awesome people that have been so supportive. For me the day I joined my first FB group was the day it all got so much better.

One of those people is my good friend Creina, from Adelaide. She was one of the first people with CRPS that I met and we have become great friends. She is at the beginning of a huge trip around Eastern Australia with her very supportive husband Jim and sweet little westie terrier, Jezebel.

One their way through to Victoria, Creina, Jim and Jez stopped off at our place in the South East for a few days to enjoy the cooler weather, go to the beach and relax. Well that was the plan anyway! We managed a walk on the beach the afternoon they arrived and then it rained until they left. So much for summer! It was so cold that winter clothes came out and there was certainly no swimming. We were really looking forwards to soaking in the water and taking in all of the magnesium that we could. There is always next time.

What the weather did offer was the opportunity to have a look around the town and take it easy. A quick breakfast and then a look through the shops. This included shopping in the chemist for pain killers and other options. Lol, that’s something only a person with chronic pain can relate to.  We walked the two dogs around the town in between stops. Gemma and Jezebel became fast friends, it was so sad for them when it was time to say good bye.

The thing that I loved about having Creina here, other than having her here…  was that we were both in the same condition and were able to do things without trying to keep up. It was fantastic. We just plodded along at our own pace. I didn’t have to drag myself around in pain because she understood when I needed to stop. I have found that even though others make allowances, it still ends up as more of a compromise and I crash in no time. I am learning to say no though.

Sadly in no time, it was time for them to head off on their trip. They are traveling in a Winnebago and towing a beautiful yacht that they will sail whenever they can. It’s really inspiring to see someone with CRPS achieve their goals and overcome such debilitating hurdles.

Have fun guys. xxx

All photos by C Krause

1, Creina and I

2, Jezebel and Gemma at the beach

3, The Big Lobster (aka Larry), Kingston SE, SA

RSD on The Doctors. OMG we are in the media at the moment!

http://www.thedoctorstv.com/videolib/init/9967

The Doctors 10/2013
Facebook has been a buzz with the 3 part story about this woman with a severe case of RSD and is full of great info one what RSD is and what it does to us. It also looks at the woman’s story on living with the disease and advice given to her on the diet that she needs to assist her body lower inflammation.
The first part of this film is what all of our family and friends need to see to get whats wrong with us. Im just trying to pin a few of them down. lol. I posted it of Facebook and as suspected most people ignored it, but there was a few that watched it and in come the sympathy and horrified comments. lol. No my limbs do not look like that!Im having trouble loading the footage onto the post but ill work on getting it there, but for now on the above link is to the story on the website for the show

Friends are so important!

When I was burnt most of my friends vanished or pretended that I wasn’t stuck alone in a hospital 350km from home. Even those who were in Adelaide at the time ignored me on Facebook or were just too busy even though they were at the Uni next door. One friend on the other hand came back into my life and made up for all of those who vanished. My friend from Uni who I had not seen in around 5 years was in to visit me as soon as she could and I could handle visitors. She was the one who dragged my depressed ass out of my room and out for a coffee in the hospital. She brought me a Lucky Bamboo that I wasn’t allowed to have because of hygiene reasons. It is still alive a year on so i think its called Lucky Bamboo for a reason. lol

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Its strange and surprising to see who is there for you when you need help. I always give and never ask for anything back but its kind of nice to open your eyes to the people who do care. Probably the best thing about my burn injury was getting my friend back into my life and continuing that friendship. Life just got in the way for us, but its like we never had that gap where we drifted apart. We were instantly normal again, like we were at uni and I think that is something to hold on to.

This weekend is a long weekend and she has come to visit and stay with me and my family. We are becoming her family away from home and I love her coming to stay. I worry with my CRPS being a pain that I’m stopping her from having a great time away, but she understands as much as anyone can. Last time I was active and I could do more than I expected, but this time I’m quite sore and tired. Today we went for a day trip down the coast to Beachport and had a blast. I get to hang out with her for four and a half days so I hope I can keep up. I was exhausted from going to Adelaide Thurs, where she caught a lift back. I’m sure I will be exhausted even more by the time she leaves on Tuesday. Its worth it though just to be able to spend time together. I’m glad something this good has come out of my burns. I’m just so lucky.

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Day trip to Beachport SA, 4/10/2013

I Love My Facebook Groups!

Everybody needs support when they are going through a hard time and the thing with CRPS is that no matter how supportive friends and family are, there is no way they can fully understand the hell that this disease causes.  I really struggled with this in the beginning and felt very isolated and daunted by what I was facing. Then I discovered Facebook Groups for people with CRPS. The Aussie and New Zealander support group was an instant match for me. I’ve joined others that have been great, but This group has become my rock.  We laugh, support each other and most of all we don’t judge. Its ok for me to have a whinge when I am at a low. Its welcomed when I post silly but relevant pictures. Probably the best bit is the people I have met in person and the friendships that i have made. How would I have made it this far without Facebook??? No wonder this used to be called the suicide disease, I often wonder if the suicide statistics have changed for CRPS since the birth of the internet and Facebook.

I hope everyone is doing well. Im currently flaring and my pain meds keep me awake. Im hoping to sleep soon.  xx