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
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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

 

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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Can I Still LOVE Winter?

Can I still love winter? I hope so. CRPS is so hard on the body in nice weather; hot weather was harsh and coped by hiding inside where it was cool and going to the beach in the evening and soaking my body back to a comfortable temperature. Now my second winter with CRPS is here and I’m not holding up to well.
Last year I just thought it was the natural progression of CRPS. The disease seemed to spiral downhill so fast. I was struggling to walk, I thought I was going to end up in a wheel chair, My neurological symptoms were worsening, I couldn’t hold a knife and fork and there were days on end where I suffered at home in misery. But then I had my first Ketamine infusion and then another and things got better. Looking back around the same time winter broke and along came spring.
So it wasn’t all just my body getting taken over by CRPS, it was also winter. Yay!!!! Something to look forwards to each year… Not.
So here I am at the beginning of winter and my body is not happy. It will be interesting to see how I hold up. The only difference this year is that I have more of a hold on how to cope. I love winter so much. I live on the South Australian coast in a beautiful part of the country and I love how fierce the ocean is during winter. I love rainy winter days where I snuggle up on the couch drinking tea and watching movies. I’m sure I will get a few of those days this year.
I’m determined to still love winter and to make the most of my time even though I might be in hell pain wise. I’m studying at the moment and hoping to start my Bachelor of Health Science (Nutritional Medicine) and I’m determined to blog more. At the moment there are days where I’m scared of what’s to come but I’m trying to make the most of things. It wasn’t all bad last winter after all.
So that’s where I’m at, at the moment. I’m ok though. I’m not looking for sympathy; I think others deserve it more. I would love to hear how all of you cope with winter?
Hope your all pain free xx