I Love this this one and wanted to share it here. Hope your all well. xx
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.
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
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 She dosn’t get why I’ve gone quiet, withdrawn, I just don’t want to sing along to the songs that are playing.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 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
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
Ah Ketamine. I just love it! Its been two weeks since my trip to Adelaide for my three day infusion. It was a great trip. I went with my second family, Steff, Phil and Amity. It was a great trip even if I did sleep for most of it. We travelled to Adelaide on the Monday afternoon and arrived in time for dinner and had the best Indian food I have ever had from my fave Restaurant Raj on Taj in King William Rd. I have not eaten there in years and it was divine. The next day I had my first day of infusions and I pretty much slept through the whole three days. It went really quickly. Basically my whole trip went much like this… Ketamine, Coffee, Food, Family and Student Doctors!
The weather during this trip was Hot, rainy and humid. It was a shocker and it did raise my pain for the first few days, but by the end of the three days I was feeling good and my pain was at an all time low. It was so nice. Steff even noticed how my presence changed as I came out of the pain. Each morning I was driven to the hospital by Phil who then returned to pick me up that afternoon. The staff in the pain clinic naturally thought that Phil was my Dad and I soon realised that there was no point correcting them. Having fasted each morning and being in need of a good coffee, I introduced Phil to my fave café, Cibo on Rundle St and I got him hooked. Each day we would grab a latte and I would spoil myself with a yummy pastry. If I move to Adelaide I’m scared that I’ll be the size of a house because I love the pastries so much. Yum! After my infusion we would normally relax before going out for dinner and eating fantastic food and I even snuck in a glass of wine when I felt the need. Not sure if that was a good choice but one couldn’t hurt. Lol.
Aside from all the food, two really exciting things happened while I was having my infusions. The first thing being that I got to speak to student doctors about CRPS! On two of the mornings I was asked if I was interested in having a chat with some fifth year student doctors. I was really excited to be able to make around fifteen future doctors aware of CRPS. The average diagnosis of CRPS is made after four years of suffering and most doctors never see or diagnose CPRS so I knew that this was a great opportunity. The students were equally excited to chat about my experience and treatment as well. I decided to be really open with them and the students on the second day really got into my story. It was a smaller group and we were chatting for near an hour and made my infusion run way over. I didn’t mind though. I hope I can have the opportunity to do it again. Hopefully someone will benefit from my sharing my story.
On the last day of my infusion, I was in recovery and chatting with a nurse about the mental strain that CRPS puts of you when she asked if I had seen anyone like a psychologist. I told her about the lack of care I had received from being in a rural area. The next thing I know she is off to ask the clinic psychologist if she could see me while I was in town. The next day she fit me in and it was great. We basically started by chatting about what has happened so far, who I am and how I am coping. Her main concern so far is my lack of sleep and how it is affecting me. I have started on Melaton and will be doing a three month trial to see if it helps. I will now do a phone session every three weeks and meet at the clinic when I have appointments at the hospital. Mostly I’m hoping that I’ll be able to improve my outlook on life and living with CRPS. Already Im looking at what I could be doing to move forwards and not make CRPS my main focus in life. It can’t own me but I have been a little stuck trying to sort it all out on my own. Things are looking up!