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

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

merry%20christmas

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

 

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

 

Hello, Hello. Sorry its been so long!

Hi, Hope your all going ok and for those of you with pain, that it hasn’t been too bad. Im going ok. My pain has been up and down but I seem to have better control over it at the moment. Im really excited to say that I am now an adult student. On Monday I began my Bachelor in Heath Science (Nutritional Medicine). Im on my way to being able to help other people heal through the powers of food.

I have started off with just half of the full work load, and will build up to what I can handle over the rest of the year. I will say that I was petrified at the start of the week when I started Human Biology. It seems so much harder than when I last did it at uni, way way back in 2001. it could have been something to do with the brain fog I had that very first day. Im going to have to save Biology for my good days and hope its a good one when I have my exam.

Im now due for my next infusion and I will be trialing having a one day infusion once a month. I have my first one on Thursday, 14th Aug. I cant wait. The last one has held up ok, but I could do with a top up. Mum is taking the day off to come with me on the condition that we go to Adelaide the night before and have dinner at Raj on Taj in the city. I never say no to Indian food. lol.

I have also started a website for our local CRPS Group. Ill post about it when I launch it. 🙂 We are a special lot here in SA and deserve our own page.

In other news…

WARNING: there will be a full moon on Sunday or Monday, depending on where you are.

You can find out the exact time for you area HERE

So that pretty much it! Ill try to post more. Although I seem to do more when I dont promise to post. lol

I’ll leave you this funny but accurate picture I found, at the bottom of the post and I will say my goodbyes.

Stay pain free people’s xx

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