Color The World Orange: ADELAIDE: Nov 6, 2017

November 6th 2017 was the 3rd COLOUR THE WORLD ORANGE day across the globe, Adelaide celebrated by lighting Adelaide Oval, the Torrens Footbridge, the Riverbank Precinct and  the Rundle Lantern in orange for the first time. According to the CTWO website Adelaide joined “Forty-nine buildings, bridges and landmarks in four countries, including Niagara Falls and the fountains in Trafalgar Square in London”

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Adelaide Oval and Torrens Footbridge lit in Orange for the first time.

As well as the lighting up of iconic Adelaide landmarks, Adelaide also hosted the first information event of its kind in Australia with the aim of creating awareness within the medical and research fields. The event was titled…

CRPS Mechanisms & Management:

What’s in fashion now? 

This event was a great opportunity for Members of the medical field to learn what it is like for those of us with CRPS and this was recognised by the organisers. Members of the CRPS South Australia Facebook group were invited to participate in the night by giving a 5 minute talk on what it is like to live with CPRS. I was happy to be one of the five who took on this challenge (It was a big challenge for me). Although only four of us were able to be there in the end, (that’s CRPS for you) we all explored different areas of living with the condition, but there were a lot of similarities.

Of course there were also talks by the Professionals. Prof Lorimer Moseley spoke of the new findings in CRPS research, Dr Velleria Bellan who was the instigator of the event(thank you) spoke of her research in Untangling visual and proprioceptive contributions to hand localisation over time. Also Dr Meredith Craigie spoke of her experience of being both a parent of a child with CRPS and also practising in pain medication and treating CRPS patients such as myself.

Overall the night was a huge success with over 200 people from both research and medical fields, Students and also other sufferers from the CRPS South Australia group. Possibly the best bit of the night was the food and wine supplied and also a GELATO CART!!! Yep that’s right, the event was supplied with a Gelato Cart with all orange colored gelato. YUM!!

A big thank you to the organisers and sponsors of this fantastic event and I look forwards to next years event.

 

 

 

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GARDENING with CRPS: I’d be lost without it!

 My life before CRPS (Complex Regional Pain Syndrome) was mostly
different to the one I live now, however in the year before, I started a small veggie
garden and loved every part of it. Especially that summer. My favourite memory
of that garden was made of Flat breads with fresh tomatoes, spring onions and
lemon thyme. Put under the grill with some sea salt and olive oil. YUM!! Now I
am really hungry… Anyway I didn’t realise just how crucial that first garden
would be for me. Not only did it introduce me to heirloom tomatoes but it
sparked a passion that would save me in so many ways.

Nectarine and Basil Jam from my first garden. YUM!

Nectarine and Basil Jam from my first garden.

The next summer I was facing a pretty dismal future. I had survived
a massive burn injury, my beloved horse Ernie passed on (It still hurts so much)
and just when I thought I was able to move on I had my first CRPS flare that
made sense of all the strange symptoms I was having. Suddenly this thing was

spreading through my body and I was losing control. Despite it all I just naturally kept gardening.

It hasn’t been easy. I get frustrated when I can’t do things or I
do them anyway and pay the consequences later. But then I know that each time I
go out there, that that night and the next day and maybe even the day after,
will be “off days” for me. But that’s ok because it’s better than nothing and I
would probably be I pain anyway and at least I enjoyed earning it.

Artichoke that I let flower. Amazing color

Artichoke Flowers with the most amazing colour

Emotionally, my garden is my saviour. I am not sure if I
would be here now without it. It gives my head the peace and space it needs
when I am worried or feeling helpless. It gives me hope when I am having a bad
night because in the morning I will be able to hobble around my beds and just
look at what has changed since last time. It’s my distraction from the crap. As
it is on the nights of researching how to make my garlic grow better, as I am
trying to ignore how hard and painful my super cosy bed has become. I have read
articles about how a chemical in the soil can have the same effect on you as a
typical anti-depressant. I really think that they are onto something there.
Perhaps it explains why after a few days in bed I feel depressed like something
is missing. It’s my garden and I need my fix. Over the past 3 years the amount
of gardening that I have been able to do has varied, but I am always thinking,
researching and buying seeds online. What would I do without it?

Physically it is my own kind of Physical Therapy that keeps my body
going. When I had my first flare, my left hand instantly froze and I lost use
of it for a while. It was the slight and gentle movement of picking cherry
tomatoes that slowly got it moving. I know in my heart that my body has benefited
so much from being outside and in my garden. Even just pulling weeds keeps my
arms moving and stops my muscles from wasting. My left arm might not do as much
but the important thing is that it does what it can.

Cherry Tomatoes saved my hand

My Cherry Tomatoes saved my hand in 2013

So far I have refused to get raised beds. Partly because I can’t
afford them and partly because it would feel like a setback for me. It did look
at one stage that I would be in a wheelchair and they were discussed. But for
now I really don’t feel that I need them. I am hypermobile in my hips and the
one thing I can do is bend over and reach the ground. So what was once great for
yoga now allows me to get down to my plants and I am quite comfy like that for a
while. If I need to I can sit on the ground or a stool to get to my plants and
so far I have only had a couple of issues where I have fallen and needed help
getting up. It’s the heavier work where I get frustrated. I can’t do it and I
hate waiting for help. I am learning to be patient and ask for help but I am
naturally independent and I had always been strong and able to do the hard
work. That has been hard for me to swallow

I know that I am so lucky to be able to still do what I can and I
dread the day, if it comes, where I can’t garden any more. I am not sure how I
would cope. For now, I am just enjoying being out there when I can. Being sick
has made me appreciate the small things and all. I know, what a clique. Mostly its
hanging out in the garden with my girls. Gemma (dog), Molly and Moggs (Cats),

Plus all of the cool animals and insects that have moved in since I
turned the orchard organic. Through gardening I have also met other gardeners
and built a little network of people to share knowledge and spare plants with.
I really love that I can provide food for my family and friends. Especially for
my parents at home and my Mum at her Cafe. I supply her all the herbs and greens
that she uses. After all they took me in when I got sick. This is my way of
contributing and it means the world to me.

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Gemma: Top dog in my garden and she knows it!

So that’s me and my gardening with a disability. To end this post I
want to leave a quote that I think sums it all up.

 

“To plant a garden is to believe in tomorrow.”

― Audrey Hepburn

Also posted in my other blog Grow To Heal

Things NOT To Say To A CRPS Patient: and yet they do!!

Ok, I know we all get people/idiots making stupid comments about our illness despite knowing nothing about CRPS/RSD. I have had quite a few myself. The one that outraged me the most was being told to “just get over it and move on with your life” WTF??? where is the button I get to press to turn this off??? I stewed on that one for a long time. I soon realised it was only me suffering. That person had moved on with her life two seconds after saying it. I will admit that I got quite negative towards this person afterwards and ended up cutting her out of my life completely to try and get past it. I’m not sure why this one got to me the most. It wasnt the worst said to me at all. Maybe that I was hurt that she had no empathy for me when I had empathy for her having a husband dying of cancer. I had been very kind to her as I knew her husband well and was deeply saddened by his illness and death. Maybe she couldnt see past her own problems. She could be a selfish person at times… ok she could be a bit of a b****! Either way she had to go because I needed to get past the negativity.

I was also recently told by a Dr that I am too young to be addicted to pain meds. My reply was that I am also too young to be in this much pain. FFS!!!

Today I came around this list of Things NOT To Say To A CRPS Patient. It was quite interesting. Its from a site called The Black and its RSD Links. A page that I am going to do some further reading on. Here below are a few of the things that are said to us. The majority of this list is things said by Dr’s. Im kind of horrified by this. Enjoy.

1. But you look fine.
2. Try not to dwell on it all the time.
3. It’s not a death sentence.
4. It’s not like it’s cancer.
5. Lose some weight.
6. Get more exercise.
7. It’s all in your head.
8. It’s probably the all the pills you’re taking that are making you sick and tired.
9. I’ve seen worse cases of CRPS/RSD.
10. You forget a lot. Try to pay better attention to things.
11. What doesn’t kill you will make you stronger.
12. Are you sure it’s not gout?
13. I knew someone who had something like that and s/he’s fine now!
14. It can’t possibly hurt as much as you make it seem.
15. Why are you on disability? Isn’t it your arm that’s sore?
16. I had a friend that had that. You need to eat a gluten free diet.
17. You’re going to become an addict.
18. CRPS doesn’t spread.
19. Does something like this run in your family?
20. RSD never spread the way you just told me.
21. An spinal block can’t give you RSD.
22. Why you have surgery in your back when RSD is in your lower limb?
23. Did you get all that for a simple ankle twisting? Gosh, you’re weak!!

To make this post a bit more fun, what would be your come back to the stupidity of some of these remarks??? Lets maybe keep it clean and witty. 🙂

Hope your all pain free. xx

 

Something To Sharpen The Ol’ Brain. FREE courses

Brain fog,  medicated blur, or just pain dumb. Thats how I feel most of the time since this darn CRPS came a knocking.

I do believe that this time can be used wisely and one of the things I want to be doing is studying to give me a career when this hopefully settles a bit. I want to be studying Nutritional Medicine and the thing that’s held me back is my fear of failing because I couldn’t get my head around anything. I posed the question asking my CRPS friends on Facebook how they coped and one thing we all agreed on was that a test run on a short course would be the best Idea. Then the topic of FREE online courses came up and I was given some good leads on websites that provide FREE ONLINE COURSES.  I’ve already signed up for Food, Nutrition & Your Health (FoodHlth) through open2study.com  and will be having a study day tomorrow.

Also recommended are the following

coursera.org

edx.org

I’d love to hear about any courses you enroll in.

Happy studying and happy pain free days. xx

 

Victorian (AUST) CRPS GUIDE BOOK

Its hard navigating your way through CRPS and scary as hell when your new and totally have no idea of what to do next. The lovely Danielle from RSD CRPS Victoria Australia has created a thorough Guide for sufferers of CRPS in the Aussie state of Victoria.

This insanely thorough guide can be downloaded from the page (link above) and Danielle is keen for the guide to become a guide for other states if someone is willing to take on the project. This is something I have been wanting to do for my state of South Australia.

Imagine if we could have one for each state in Australia, New Zealand, The US and The UK. Anywhere really. Imagine how you would have felt if way back when, you were able to access a guide that told you off all the appropriate resources available in your area. I know that this is something I have been wanting to provide along with other projects that will bring awareness to our cause.

One day we will be as normal and understood as people with other Neurological problems. I cant wait! xx

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