Lets Netflix and…

I recently asked a CRPS Facebook group what they needed to get through a bad day with a flare. It really surprised me that around 95% of responders mentioned Netflix and other streaming services as one of the best tools for getting through the day.

The reason for that is purely for the distraction it offers us. Its a tool for keeping our mind off of that nagging pain. We know it hurts but our focus is shifted. We can put on something easy to watch and zone out for a few hours. My choice of easy viewing today was Kims Convince. A great comedy that even made me laugh despite my mood and the extra pain meds.

I know that people with chronic pain have survived and coped long before the internet and streaming services. But I also know that many have not. So its a positive move for our lot. Its better than daytime tv and books we cant focus on, or hold.

I have only had Netflix for the past 9 months. I resisted it before and I am so glad to have it today. Although I dont like using it all the time. Its still important to get some sort of excersise. But some days that isnt going to happen and on those days its best to stay in bed and Netflix and… Chill? Or just try to distract yourself from the pain.

I hope your having a pain free day. Thanks for reading. Xx

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Life with CRPS: Something to look forwards to!

I just had a bit of a profound thought and figured it would be worth sharing.

Life with CRPS can feel pointless at times and I remember in the early days feeling so scared and thinking my life was over, pointless and I only saw a future of pain. Everything I enjoyed doing was taken from me and I felt I had nothing left. I’m sure that’s a feeling that anyone with CRPS can identify with.

So I was just thinking about how I have developed a love of indoor plants as a new hobby and when I am laying in bed during the night I often look online and plan the plants I want to buy. Each fortnight when I get paid I get excited if I can afford to buy a plant or I find a great buy from a private seller and get a propagated cutting for $10. I live very cheaply and my one extravagance is a plant. I was worried I was a little obsessive and I do get some negative comments. But I realised why it’s become so important to me…

I need something to look forwards to!

It’s simple really. Most people have a sport, concerts or just going out on the weekends. but I don’t. I am not working and am struggling to find work, let alone an interview. I am single and have a chronic illness (attractive) and that may never change. And I am 36 and any chance of my having kids is getting less and less. So my future could be lonely if I don’t do something. But having my plants makes me happy and in a life that once seemed pointless, that’s really important.

My Heart Leaved Philodendrons ❤️

It’s no different to someone needing their weekly game of soccer to unwind from their shitty job. My “job” is shitty to. So I deserve to have something to look forwards to.

So… I am not going to feel guilty or embarrassed that I am buying more plants. I won’t be sneaking any more plants past my housemates and hiding them incase they think bad of me. They don’t, but it’s ingrained in me anyway. I won’t accept hearing “not more plants” again or someone rolling their eyes because I’m off to pick up a plant. At least I am going out and having an interaction with someone. Yeah, I will be sore and exhausted after. But it’s better than staying home sore and exhausted anyway.

My Philodendron Micans. Love those velvet leaves.

This could be any hobby, not just plants. It could be clothes, model trains, Star Wars memorabilia. It doesn’t matter. The main thing is that we have something to look forwards to.

I am now meeting other growers, I’m leaving the house to go to the plant shop, I am even planning a plant swap event, which I never would have done before. Putting on events is a connection to my old life. It’s better than sitting at home depressed.

My Manjula Pothos.

Also I could be doing drugs or gambling the little money I have. After all, not all that long ago my life had no point. It would have been easy to give up. So as long as my bills are paid and I have food on the table, who gives a crap if I come home with another plant. It makes me happy and I deserve to be happy.

So anyone that criticizes my plant Colection can shove it. Sure I might only talk about my plants, but maybe they should appreciate that their life hasn’t been reduced to only having that to be excited about. Why belittle the one thing I have?

Of course it’s not my only hobby now, but it’s the most prominent at the moment.

I’m so glad I am not that same scared person I was a few years ago. I’m glad I now have things to look forward to. It’s so important and not talked about enough in our community.

You can see my plants on my other blog or Instagram

I hope you’re feeling well. Xx

What are your things to look forwards to?

Insomnia: We are NOT friends!

Simply put, Insomnia sucks!

That statement alone could be all I write here and this post would be complete. But I feel like talking about it a bit so here goes.

For me I either have Insomnia or a I sleep non stop. I’ve had a few stints where I slept normally and it was lovely. Right now its 5am and I have been awake since 3am so really the 3 hours of sleep I’ve had is a good night for me. My longest period of no sleep was 6 days. I was a mess at the end of it. After 3 days it starts to mess with your head a bit and by 6 you feel insanity creep in and your a walking zombie.

I have read all the literature on how to get to sleep and create a sleep positive environment and for me it doesn’t work. Simply by laying there trying to sleep, I will not fall asleep. I get frustrated too easily and it just keeps me awake longer and longer. It just doesn’t work for me, because damn Insomnia keeps getting in the way. I have found that if I am going to sleep then my best chance is to distract my self and the insomnia until I get drowsy and drop off to sleep. To do this I might read a book or on my phone. Watching a movie or Netflix is great as well. These are my go to distractions because I can just drop off when I need to without my brain/insomnia realising what’s happening because its too busy relaxing to a few episodes of Brooklyn Nine-Nine. (One of the best show’s ever!) I have to say that even writing this is relaxing me enough to make me drowsy and I mean that in a good way. I may get a little nap in before getting up. But I better stop talking about it in case good ole insomnia realises what’s going on.

I do worry about what this lack of sleep is doing to me long term. I always see articles about what lack of sleep can do to your health and I worry it gets in the road of the long life I had planned. Even now I am noticing the effect it has son the way I look. I have permanent darkness under my eyes and I am finding that I need heavier makeup to hide it when I don’t want to look haggard. I am even finding a few grey hairs creeping in and I put it down to being worn out. So it this is happening on the outside then I worry about the inside. Perhaps this is something I need to work on improving.

Anyway, Mini rant over. In short I wish that insomnia would take its self off somewhere else and I might try for a little more sleep.

Sleep well people. 🙂 Thanks for reading.

 

ILLNESS IN FILM: The Punk Singer

Lying awake, It’s currently 4.15am and I’m stuffing about on YouTube. I just remembered a film I saw a while back during a shitty day where I was stuck watching TV to distract myself from my pain and generally feeling like crap. At first the awesome music draws me in, but then the film takes a turn that really connects with me.

The Punk Singer is a film about Kathleen Hanna, a singer from bands such as Bikini Kill and Le Tigre.  Not only is she a great musician, but also a pioneer of the feminist punk Riot Grrrl movement. (1) She also suffers from Lyme disease that triggered by bacteria spread by tick bite.

Lyme disease manifests as a multi-systemic illness that can result in symptoms affecting random parts of the body including the muscles, joints, organs, brain, gastro-intestinal and neurological systems. (2)

Kathleen’s struggle with chronic illness is honestly documented in the later part of this film. For me, it really represented a true depiction of what I feel living with chronic illness in general. Unlike the Lady Gaga film, that probably unfairly left a lot of people feeling kinda betrayed by the way her Fibromyalgia was shown. This film is honest and raw. There is no glossing over how shitty she feels and the lengths she goes to, to find treatment. It’s brave and real and that’s why I thought I would share it on this site.

Also the music is awesome and has some great musicians in it. Unfortunately I can’t get the whole film so here is the trailer…

Here is a clip from the film that focuses on Kathleen dealing with her condition. The sound is really low but beggars cant be choosers and all that…

I hope you are able to find this film in its entirety. Its a great film and I hope you enjoy it.

I hope you are feeling well, pain free and all that. xx

 

(1) https://en.wikipedia.org/wiki/Kathleen_Hanna seen 24/08/18

(2), http://www.lymedisease.org.au/about-lyme-disease-2/ seen 24/08/18

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