Wednesday 7 March 2012

Complications and an incredible Experience


This blog post is about how my CRPS was in 2004 to 2005, and things that happened in these 2 years.
It was 2004 and I had started a new tablet called Amitriptyline, this medicine acts on nerve cells in the brain. I was taking two tablets a day. After a couples of months of been on this tablet I didn’t feel that it was working, but then I started with awful side effects. I started having hallucinations at night when I was in my room trying to get to sleep. At first it wasn’t too bad I thought I saw things move across my room but then just thought it was because I was tired. It wasn’t until I was seeing things walking through my bedroom door and monsters hanging off my ceiling that I started to get really scared. I was only 12 so didn’t really understand what was happening until we spoke to my doctor and they said it is side affects to the tablet. I stopped the tablet and then these hallucinations slowly stopped as the tablet went out of my system.
Later into 2004 I started getting a different sort of pain where my CRPS is, but in the scars that I got from the Ilizarov frame. It felt like a stabbing pain in one of my scars and then over a couple of hours my leg started to swell but mainly just in the area I had the new pain. A few hours later I still had this pain but it was becoming more intense. Then all of a sudden a bubble of blood came through my skin, it hurt so much and couldn’t understand what was happening. Within an hour my skin had opened up on the scar that had been hurting and it was bleeding. My mum took me to see my doctor as soon as I could get in and he could not understand it, he told me to go see a dermatologist. When I saw the dermatologist, he said it was very rare for this to happen but it is secondary to the CRPS, but because my leg is hyper sensitive I couldn’t stand sticky dressing or really any dressing but eventually I found a dressing that was must tolerable but still caused extreme pain because it was on my leg.
A few weeks later and I still had this open sore on my leg but I started to get the stabbing pain again in a different area on another old scar. The same thing happened and my mum sat and she saw the blood just come through the skin and again within hours it had opened to the full size of the scar. These sores become infected very easily so I was put on antibiotics. Within a few months they had healed.
Middle of 2004 I went to the hospital to see my physiotherapist and was told my mum and dad needed to go and talk to a member of the pain team, so they could talk about how they are coping with me having CRPS and what it was like is like for them. I did my physio with my physiotherapist and thought nothing of my mum and dad going to talk to someone. A few months later I had gone to bed and I heard the phone ring, I asked mum who rang and she said someone had the wrong number. An hour later my dad came home from work and my mum came to see if I was still awake, I was, she told me to come down stairs. I went down and my brother, dad and mum were sat down and told me they had something to tell me. They told me that at the appointment where they went off to talk to someone, it was to discuss me be nominated by the hospital to go on a trip. The trip was with a charity called dreamfilght and I had been chosen to go on a trip to Florida. I couldn’t believe what they were saying I just started crying because I was over whelmed. They told me I would be going with 200 children who all had a disability of some kind that had been nominated by hospitals and then chosen because they feel they deserve to go. My mum and dad hadn’t told me I had been nominated because they didn’t want me to be upset if I wasn’t chosen to go. After it had sunk in I was so happy and couldn’t stop smiling. The only thing that I was unsure about was leaving my family for 11 days because it was only me going and not them.
In about March of 2005, I went and met the group that I would be in because there were different groups for different regions of the country. There was a carer for each 2 children in every group. It was nice to meet the other children that would be going and it all felt real at this time and I was getting really excited.
About a month before I was due to go to Florida I got a sore open up on my leg again, and couldn’t believe it. I was determined not to let it get to me to much because I was so looking forward to Florida.
October came and it was time to go on the trip of my life. We went down to London where we met all the other children that were going and had a massive party where there were celebrities and it was amazing. Then the next morning we went to the airport and went to a private place to wait to get onto the plane and there was another party with more celebrities. We got on the plane and it was like no other plane journey I had been on before, there was entertainment all the time and the 9 hours just flew by. When we got to Florida it was amazing we went to all different theme parks and went on all the rides and didn’t have to queue or anything. The rides really hurt my leg but I just tried to enjoy myself and every minute of it. The part I enjoyed most was the point where we got to swim with dolphins, it was incredible we got to feed them, kiss them and swim with them.
When we had arrived back in England and were on the bus home I was so excited to see my family again. When I got off the bus and saw my family and just told them I had the best time ever and on the way home I didn’t shut up because I told them all about it and then when we got home I showed them pictures and gave them the presents I had bought for them. My family said that it did me the world of good because I was more confident and although I still had CRPS I was more like my old bubbly self and that was because of the fun I had.
I will never forget that experience it was just simply incredible I made some friends for life and I am so grateful for been chosen to go.


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