ADELAIDE CRPS EVENT: My Speech.

If you read my last post, you will know that I, along side 3 other CRPS sufferers, gave a talk on our experiences living with the condition, during Adelaide’s first Colour The World Orange event on Nov 6, 2017. It was a great event ad by doing this we were able to give the Drs, Researchers and students some insight into living with CPRS.

I decided to participate partly because I felt I needed a challenge because part of having this condition is that it has chipped away at my self-esteem and I felt I needed to push myself somehow to gain some back. I agreed without allowing myself to think about the fact that I would be standing in front of people who knew a lot more about the condition than I do. Add to that my speech became a big issue in the week leading up to the event. Damn you CRPS!!!!!!!

In the end I was so glad I was there and gave my speech. I started out so nervous that I stumbled through the first paragraph and then after that I was fine. After I felt I could do anything, but really what I wanted to do was do it over so I could do a better job of it. lol.

So here is my speech..

Hello, My name is Sarah and I have suffered from CRPS for around 5 years. My CRPS was triggered by a burn incident that left me with second degree burns to my left arm, hand, shoulder and the left side of my face. I was at my parent’s place where my Dad had a fire burning for doing a pre-summer clean up. I didn’t realise that a can of spray paint had accidentally been put into a box of documents that I had the bright idea of throwing onto a fire to get rid of. Unfortunately the care I received at our local Hospital was far from adequate and It was four days before I was sent to the burn unit at the old RAH and by then infection had set in and I was in a bad way.

Despite signs that something was wrong,  it was 4 months before my first pain flare, Suddenly my left hand and arm were swollen, stiffening and loosing movement. I had electric like pain shooting up my arm and down my fingers, as well as a crushing pain in my joints and bones. It was during this time that I started researching online and discovered CRPS as a rare complication of burns. I was diagnosed with CRPS the day before my 30th B’day after I took my findings to my GP.

After my diagnosis the condition took off quickly and within 5 months it had spread into both my legs, and soon after to most of my body from the neck down. My list of other symptoms is pretty long ranging and changes from day to day. These include insomnia, fatigue, forgetfulness, and speech, vision, hearing and motor issues.

Finding other sufferers online and in person locally here in South Australia has also helped me with support and advice that has been invaluable. Alone this is a very isolating condition. Through joining Facebook groups for CRPS, I was able to meet other sufferers in person here in Adelaide and we now have our own group with over 50 statewide sufferers. That’s CRPS South Australia if anyone is interested.

Another turning point was coming under the care of the Royal Adelaide’s Pain Unit. At that point, I was losing strength in my legs, my flares left me bed ridden and I was a general mess. At the pain unit, I soon started having Ketamine infusions for 3 days every 3 months and although the first time the relief was delayed and short lasting, it did quieten down my other symptoms. A friend with CRPS had advised me that it might be this way and to not feel disheartened if change wasn’t immediate. By my third round was having lasting effects and slowly with each infusion I have gotten more control over my condition. Aside from Ketamine, I treat my condition with Lyrica and Tramadol on a daily basis.  

I have also found that gentle daily exercise helps keep my pain and symptoms in check. I walk, use a stationary bike and do a mix of small weights, yoga and Pilates. This year I also started riding a bike, something I previously couldn’t do.

I am also a big fan of adding Magnesium to my bath about once a week. I find it relaxes my muscles and helps calms my pain to a level I can deal with, especially when I have over exerted myself.

There are things that I have found hard about having this condition. Initially it was hard explaining my situation and seeing the look of doubt or confusion in people I care about, Sadly I also found myself with only a few friends left.

Now after 5 years of CRPS, for me the fatigue that comes with my CRPS is the most debilitating part. I am now working a few hours a week, and to do that I need to plan my week around the rest I need before and after each work day.

Health wise, I have been diagnosed with type 2 Diabetes, an underactive thyroid and high cholesterol since my crps diagnosis.

Mentally the condition has been a struggle with periods of anxiety and depression, I have mourned over the life I have lost and struggled with losing my independence. For a long time I wondered if there was point to life with this horrible condition, especially if it stopped me from living a meaningful life. But in a lot of ways I have also been very lucky.  

Despite the negatives of having this condition, there are positives. Including the fact that I have responded so well to the treatments I have tried, the friendships I have made through this condition and the progress I have made in the past 5 years.

I have benefited from a positive living environment at my parents’ house, in the country where It is quiet; I have my cat and my dog for company and my two horses who get me out of the house each day. I have a veggie garden to potter about in on good days. Plus I am close to the beach.

Having a positive attitude is also essential for getting through this condition

I try to treat the 3 days of my Ketamine infusions as a little holiday from my CRPS where I can rest and catch up on my sleep, as well as being looked after by the wonderful staff at the pain unit. I have also had the opportunity to speak to student doctors touring the ward about my CRPS

Having a team of Doctors, specialists and practitioners who support me is essential to my care and initially that wasn’t easy. I now drive 100km to a GP because I wasn’t the help I needed in my home town because they did not understand the condition. That is why I feel events like tonight are so important.

Thank you all for listening to my story and for educating yourself about CRPS. Good night.

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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.

 

 

 

CRPS SOUNDTRACK: Comfortably Numb

 

CRPS SOUNDTRACK: Comfortably Numb

A song by Pink Floyd

 

Ok so I just love this song and when I got CRPS I suddenly understood it on a whole new level. I really relate to lyrics like “Now I’ve got that feeling once again, I can’t explain, you would not understand, this is not how I am”. It’s the feeling I get when a big flare comes along and you try to explain your pain to someone who has no idea what extreme pain is. In fact, according to an interview with the writer/singer, Roger Waters, most people
assumed the song was about drug abuse, or more strangely, Masturbation… Yep!

 

I also relate to the title, “Comfortably Numb”. For me it’s the feeling I get when my pain medication kicks in, the pain eases and I relax a bit. To be honest the doped out feeling can be bliss after such extreme pain. It’s like chill out time that only pain sufferers can understand.

 

According to Waters, the song is about being sick with a fever when he was a child. “I remember having the flu or something, an infection with a temperature of 105 and being delirious. It wasn’t like the hands looked like balloons, but they looked way too big, frightening.” He also stated in a later interview that the present part of the song is about being on tour and thinking he had a stomach disorder when in fact he had Hepatitis and didn’t know it.

 

I am going to post the original video but I would also like to post a cover version by the Scissor Sisters as it is one of my fave covers of all time.  Let’s just say it’s a very different version of the song. Id love to know your thoughts on both versions and what you take away from each of them.

 

“Comfortably Numb”

 

Hello,

Is there anybody in there?

Just nod if you can hear me.

Is there anyone at home?

 

Come on now

I hear you’re feeling down

Well, I can ease your pain

And get you on your feet again

 

Relax

I’ll need some information first

Just the basic facts

Can you show me where it hurts?

 

There is no pain, you are receding

A distant ship smoke on the horizon

You are only coming through in waves

Your lips move but I can’t hear what you’re saying

When I was a child I had a fever

My hands felt just like two balloons

Now I’ve got that feeling once again

I can’t explain, you would not understand

This is not how I am

I have become comfortably numb

 

I have become comfortably numb

 

O.K.

Just a little pin prick

There’ll be no more aaaaaaaah!

But you may feel a little sick

 

Can you stand up?

I do believe it’s working, good

That’ll keep you going through the show

Come on, it’s time to go.

 

There is no pain you are receding

A distant ship smoke on the horizon

You are only coming through in waves

Your lips move but I can’t hear what you’re saying

When I was a child

I caught a fleeting glimpse

Out of the corner of my eye

I turned to look but it was gone

I cannot put my finger on it now

The child is grown

The dream is gone

I have become comfortably numb.

 

And now for something a little different but damn good. Here is a link to the official video if you want a look. I couldn’t post it for some reason.

I hope you are pain free or comfortably numb today. xx

Resources:

http://www.songfacts.com/detail.php?id=1697, Seen 28/06/2016

http://www.songfacts.com/detail.php?lyrics=1697, Seen 28/06/2016

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.

gemma_zps2e6df28b

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

SUMMER: Surviving the heat with CRPS

I love summer here in Australia but now that I have CRPS the heat really kicks my ass! Today is a scorcher and I am hiding away indoors with the air-con on. This is my second summer with CRPS. Well it’s actually third, but the first one I was only having minor symptoms, hadn’t had a flare and didn’t know anything was wrong until towards the end of that summer. Last year was my first full summer and it was a hot one. I remember a full week of days above 40deg. My mum actually helped/half carried me into the water at the beach one time as I couldn’t walk or hold myself up. Luckily we can drive and park on the beach here so it wasn’t far to the water. After 20min I was good as gold. Well kind of!
We haven’t hit 40 deg yet this year, but it’s the first day of hot weather we have had and I’m right back there again. I hide away inside all day and hopefully sleep right through it and be up at night when it is cooler and after my body had been soaked in the ocean and cooled. That’s where we will be heading late this afternoon. Straight to the beach.
So I was thinking that maybe I could compile a list of things that we can do to cope with the heat. This is what I have so far.

·         Stay cool: Do whatever it takes. Sit in front of the air conditioner, have a cool bath or shower, Go to the pool or beach to soak your body, put a soaking wet cloth around your neck, make sure any car you’re in had a working air-con. Whatever it takes. Even if it’s having a fan on and a sheet over you to stop the air from upsetting your body.

·         Go to the Beach:If you’re lucky enough to live near to the beach, it is going to be your saviour during a hot summer. I tend to go later in the afternoon when the beach is quieter. The movement of the water gently massages your body while it cools you down to a level where you can cope. The magnesium fix that you get will also help with your pain and other symptoms. Plus It’s fun to go to the beach, move your body around and you get outside and get some Vit D. Always take someone with you tough, so maybe make it a bit social. It’s a great way to spend time with a loved one. It’s also a good place to work on moving any part of your body that isn’t doing so well. It’s like Hydro therapy and really helps if you’re able to cope with being in the water. Even if you just walk along the beach or stand in water an inch deep. Whatever works?

·         Stay Hydrated:This is a must. If your hot your probably sweating and loosing fluids from your body. The extra pain meds you probably need will also be messing with your body and drinking lots of water will help you cleanse your kidneys when they are working harder in the heat. Really the body can’t work without being hydrated. I carry a one litre water bottle around with me and try to fill it a couple of times. Usually in the heat I will have about 2-3 litres. But don’t overdo it. You can do a lot of harm to yourself if you over drink. Some days I feel that I need something else to satisfy my thirst and water isn’t cutting it. I try an electrolyte replacer. Usually I will use a product that is meant to be for when you’re vomiting. Or I will just get a yellow powerade. I always have yellow because I am not allergic to the crap they put into it. There are plenty of recipes for making your own healthy energy drinks. If you’re interested, here is a link to an article with recipes.

·         Move your body:Sitting around staying out of the heat can lead to us CRPS sufferers seizing up. That is not a good thing. Maybe do some physio, Pilates or use some sort of exercise equipment. You don’t have to overdo it, just move. Maybe wait until it cools down and go for a short walk. I like walking on the beach. It’s relaxing and if I walk very shallow water it soothes me feet. Even watering the garden in the early hours or in the evening is moving your body and keeps it happy. I find that if I don’t move, I hurt more.

·         Make sure you have a good supply of all of your meds:You don’t want to be caught out with no meds and have to go out to get them. The heat will punish you.

·         Find something to keep you occupied:I try to sleep a bit, but I can’t sleep all day. Maybe have some DVD’s or TV shows to watch online. Have a craft, art, make a blog, read a book. Whatever keeps you busy.

·         Ice cream: go on, you deserve it!

So that’s all I can think of at the moment. I may add to the list if I think of any others. The main one though it to stay cool. Do you have any suggestions? Let’s make this list grow so we can all benefit.
Stay cool people. xxx

The Sweetest Xmas Gift Of All

I hope you all had a wonderful Christmas, surrounded by loved ones and with low pain.

 My day was a quiet one. We had lunch in Robe, S.A. with family and then home in the evening where I fell asleep on the couch.  It was the perfect day for me considering how exhausted I have been. We don’t really do presents in my family, except for the little ones. I am very close to my cousin, Alison who turned 5 just before Xmas and I love spoiling her rotten, so this was as good a time as any. I did not expect to get anything from her, but she gave me the best present that I could ask for.

 She gave me my gift and was so excited she had to help me unwrap it and before I could even work out what it was, she grabbed it out of the wrapping to hold it up for me. She had done a self-portrait and under her instruction, her mum appliqued it onto a patchwork cushion. I couldn’t believe it, I loved it.

Then she informed me that when I am having a bad day, I could lay down with the cushion and be able to cuddle up to her. My heart melted instantly.

So even though I wasn’t expecting anything for Xmas, I felt like I got the best gift of all.

I hope you all felt as special over the holiday season as I have.

*I decided to make this a pink post as its Alison’s fave colour

Merry Christmas and a PAIN FREE New Year

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Merry Christmas to all of you amazing CRPS sufferers and supporters. I hope that you have a pain free day and are able to enjoy your day with family and loved ones.

I know that the lead up to the big day can be quite stressful for us and that stress often leads to more pain.  So please consider taking it easy and pacing yourself so that you can enjoy yourself.

I’m kind of expecting to be in pain after not taking my own advice. OOPS!!!! I did also try to rip my little toe off with a door. It hurt like hell and was the better of my two CRPS feet. But, I will make the most of the day anyway and spend my day sitting with family and enjoy spending time with them, watching the kids open their presents eating more than I should and drinking my elder flower cordial and sparkling mineral water.

Have a wonderful Christmas. xxx

P.S. This is my fave Xmas song.

Wham: Last Christmas