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

 

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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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The Stupid/Funny Things We Do!

Stupid/funny little injury today. I went to say hello to Cocky, our pet Sulfur Crested Cockatoo tonight. He is my boy and had been upgraded to a bigger cage this week.

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I went to help him down to where he eats and sleeps. He lost balance and grabbed/bit my CRPS arm. f***!!!!! I screamed, he flew down and while I was sobbing in pain he turns to me and screams “your a bastard” and then throws his head back and cracks up laughing at me. How sweet!

How could you not laugh but I’m paying for it now. lol I have two very red and raised patches above my wrist and on my burn area. I was just feeling better after spending the day in bed. 

I hope your all doing better. 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

What Did I Do To Deserve This?

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I often wonder if I did something to deserve getting one of the most painful chronic diseases known to man. Did I do something bad in a past life? If I did it must have been pretty bad. But then I also think about why I got sick and is there something I am supposed to learn from this? I do think I was on the wrong path before I had my burn injury. Not in a bad way, I just wasnt doing what I wanted. I now realise that I was very unhappy and letting a lot of people rule me in a way. Living in a small town was lonely and I worried about wasting my life.  I lost so much, but then also gained a lot. I have some great friends that I have met through CRPS, I’m much closer with my family I think Im earning a good next life. Thats if we do get more chances.

Still, Im really over it. I want my life back. Surely I have earnt my next life and learnt what I need from this. I guess I just have to hope for the best and that the universe has a bigger plan for me. A good one at least.

I hope my silly rant makes sence. My meds are kicking in. Off to bed for me.

I hope your all having god days. xx