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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