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?

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

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

 

HOW DOES IT FEEL? The Spoon Theory

Really now that I have written the title to this post, I cant help but sing Blue Monday by New Order. “Tell me how does it feel…to treat me like you do”  Maybe I should add the song to my CRPS Soundtrack posts.

I’m wanting to share an article posted on a great site called But You Don’t Look Sick.com  But first I want to share why it meant so much to me. 

We all have that person in our life that just dosn’t quite get it. I have a friend that understands that I’m sick, but at the same time not really. I suck it up while we are spending time together and try not to mention my pain. I try to keep up and she cant understand that at some point in the day I’m not going to be able to do any more. She dosn’t get why I’ve gone quiet, withdrawn, I just don’t want to sing along to the songs that are playing. I just want to rest. I’m done but its still early. Then because I don’t say anything about how Im feeling I suddenly hear the comment “you should go back to work, you have been fine this weekend”  or “Why are you in pain still, you had your infusion the other week?’ My heart sinks, I’m too tired to cry. How come they dont understand?

How can they. End of the day I said nothing. Sure I might have looked down and beaten, But I was the one who hid the truth. But surely they can tell. Other friends can. Three days away with my second family and they saw my presence change when my pain went away. They got it! Mum can tell cause I frown and I get a little skin crease between my eyebrows. But not everyone will understand. It just hurts when you thought they would. I spoke to my psychologist today about it and to be honest I cant remember what she said to me. I was so upset just telling her about this problem. I felt like I was betraying my friend or dobbing her in. I know she isn’t trying to hurt me. She just cant understand because she has never been through this and I hope she never does.

Then as if the universe answered me, a friend posted an article on a facebook page that helped me understand the other side and how I could help her understand.

THE SPOON THEORY!

The Spoon Theory written by Christine Miserandino.

The link above is the article that helped me work through my problems and I hope it can do the same for you if its something you need. It works on the theory that a healthy person has unlimited energy and that energy is measured in spoons. People with chronic illness only have a limited number of spoons and each activity they do costs a spoon. If the sick person runs out of spoons they can borrow from the next days total and leave them self short for tomorrow, running on a more limited number of spoons. Or they can crash in pain unable to continue the day, unable to do the smallest tasks like doing the dishes, talking on the phone. They are just all out of spoons.

This article really is worth the read if you still have any spoons left. Im on my last one typing this.

Hope your all well. xx

MEOW: My cat is the best medicine

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Ok, sure her purring and weight isn’t ideal on a bad day where even my clothing can hurt my poor body, But I love my little girl and the comfort that she gives me is worth that extra bit of discomfort. I’m in pain anyway!  On a not so bad day, I feel blessed that I am “worthy” of her cuddles. Yeah, any one with a cat knows what I mean by that! On nights when I’m flaring Molly will come to bed with me or climb my window screen until I hobble out of bed to let her in. She has taken to sleeping next to me rather than on me since I’ve developed CRPS. On a bad day she sticks by me and has taken to leading me to the couch and waiting for me to sit before lightly climbing on. She seems to know before I do that I need to rest. Although, I do think she loves having me there to nurse her all night long.