success and patience

on the 9th December 2013, I went back into hospital to have the Spinal Cord Stimulator battery put back in. After everything I went through before this meant more than anything to me and I just wanted it to all go right. My neuro surgeon told me that because of the scar where the battery goes in had been operated on 6 times that I would be more sore after surgery due to the scar tissue they would have to go through, but he also said that they would try and cut away the old scar because it looked in a bit of a mess and stitch fresh skin together.
I was held in recovery for nearly 2 hours because I was in a lot of pain when i woke from surgery and was been sick because I don't react well to general anesthetic but once they got me comfortable they moved me to the ward. I was the allowed to turn my stimulator back on, once I got it to the right level of setting, it was just like flicking a switch from pain to 65% relief. It felt amazing and was very emotional to have that relief back. i was kept in hospital for 1 night and then went home. My scars from the surgery were incredibly sore and i could barely move but is worth it because I know the surgery pain will go over time.
2 weeks later I went back to hospital to have my scars checked and to see if they were healed and ready for the stitches to be removed. the doctor said they looked good and they took the stitches out (which was quite painful). I felt really anxious about the stitches been removed because this is where it all went wrong but touch wood its going well.
Although i was sore at Christmas it felt amazing to be able to enjoy it and to be able to control my pain at the same time. about 3 weeks after surgery the soreness started to ease very slowly, and I tried to start doing simple tasks, like drying my own hair and putting shoes on.
I have found the SCS is very positional and I have to adjust it very frequently when changing positions. For the first time while having CRPS I have been able to wear leggings and boots that are touching my leg, due to been able to turn my stimulator up quite high.
I can't thank all my family enough for the support they have given me but my mum has been incredible, she has took time off work to look after me and has had to help me so much.
It has now been 5 weeks since my operation and I went to the pain team at hospital to have post operation review, and they were happy with how it was going and that I had healed well. They also adjusted my stimulator because I had the tingling sensation in both legs but I only need it in my right leg. After a few tried they managed to find a setting that worked better for me and where I have the majority of tingling just in my right leg. I also got told I would be able to start physiotherapy in a couple of weeks.
I am still quite sore but that is easing slowly and I am getting there now and I was told I still maybe a little sore for another two months because all just needs time to settle down and heal properly.
Due to having the relief I have been getting impatient because I just want tot try and do everything, but I do have to be patient and take baby steps. I have got many goals i want to achieve but I know its going to take time and been told its going to be a lot of hard work but I am determined to get there and will do all the hard work I have to.
For the first time in 3 and a half years I stood both feet on the floor using crutches to balance, it felt like a dream and this was a major achievement for me, and this is where it all starts and because of all the support I have from family and friends I know I will get there.

dreams and nightmares

After a year and a half of waiting the day for me to finally have the spinal cord stimulation had arrived. I was nervous, terrified but so hopeful all at the same time, I didn't know what to expect or how it would feel. For the first stage of the operation, I was awake, they threaded the wire up my spine, which I could feel but was bearable as I had been given local anesthetic in my back.  When they thought the wire with electrodes on, was in the right place they connected it to a device outside my back, and started to send signals through the wire, as they turned it up I started to feel a slight tingling in my leg. After slightly moving the wire about they got it in the right place and started again to turn it up, they got to a point where each time they turned it up I got less and less pain, and then they got it just right, I burst into tears because I instantly had about 60% relief from the pain and just felt this tingling instead. They tunneled everything into to place ready for when I would have the next stage. I was giving the remote to control the stimulation and couldn't believe I finally had relief and control, it felt like I was dreaming. I was very sore from where they operated but that was just surgical pain and I knew it would go away in time. My consultant came every day to see me to check it was still working and I was happy with it, I was then told that to test the success of it I had to turn it off for as long as possible. When I finally felt brave enough to turn it off, I pressed the button on the remote and it went off, all the pain came rushing back, I felt so sick, dizzy, I was sweating and went really pale and couldn't turn it back on quick enough. That just proved how much it worked.

A week after the first stage they decided to put the battery implant in. I was kept in and they did it all in one go because I still had the open sore on my leg so they wanted to do it as soon as possible to try and keep infection away. I was asleep for the second stage and they tunneled everything that was on the outside of my body to the inside. The battery implant was put in the side on my stomach. In total I have 3 scars from this procedure. I am always really poorly after anesthetic and I was this time but I couldn't wait to get back to the ward and turn the implant on.  2 days later I was allowed to go home. I was really sore and could hardly move but felt better in myself already due to having the relief from the CRPS and I was getting between 4 and 7 hours sleep instead of 1 hour. 10 days after been at home I had to have my stitches taken out by the local GP. They were taken out, however 2 hours after having them out, the scar on my stomach was starting to open up, I went to the doctors straight away and they steri-stripped it and I was put on antibiotics. We rang the hospital straight away because we had always been told that if I had any problems, we were to ring them straight away. The doctor my mum spoke to said that he had spoken to my consultant and he was happy with what he had done and that he put me on antibiotics for precaution. A few days later about 10pm I went to move across in bed and felt something wasn't right with my scar, so I looked at it and the dressing on it was just filling with blood and then blood starting pouring from the dressing and the dressing fell off. My scar kept bleeding and we kept pressing dressings on it but blood was filling them instantly, and after about 15 minutes it stopped. My mum rang the hospital and they said to ring in morning and maybe go in then, minutes after my mum came off the phone it started bleeding again, just as bad, I had never seen this much blood before and was quite scared. We rang the hospital back because there was no way I could wait till morning. It continued to keep bleeding for 10 minutes a time on the way to hospital. I got to the hospital at midnight, and the doctor on duty decided that it needed re-stitching immediately. I went down to theater at 2am and had it done under local anesthetic. They swabbed the wound to check for infection, and a couple days later it came back clear and that I could go home. However before I went home my consultant came and spoke to me and asked what had happened when my stitches came out, so I told him and he said that he had never spoken to a doctor and that I should of gone straight in the day we noticed the scar was opening!!!

After been back home for 2 days, my scar started bleeding again, not as bad as before, but it was clear something still wasn't right. I got re-admitted to hospital and unfortunately my consultant was on holiday so the other consultant was keeping an eye on what was going on. A week after been admitted, they decided to do a wash out of the scar, which involved opening the scar and washing out the cavity where the battery was and swabbing the scar again. This caused severe discomfort and was so scared of what was going to happen if this didn't work. The swab result came back clear again, the doctors couldn't understand why this was happening.  Another week later and I started to feel unwell, the scar was hurting more and more each day, I was feeling sick and going hot and cold. My consultant came back off holiday and said that he wanted to do another wash out so he could look at the battery cavity for himself and do a real thorough job. I went to theater for the wash out and when I came round, I couldn't move at all and I was like this for 3 days, this was due to how thorough he had been, had had taken the battery out cleaned and scraped the entire cavity and put the battery back in, another swab was also taken. 3 days later I was told the swab result came back clear yet again, I was relieved but still couldn't understand what was going on. At night, a nurse told me that they had found an infection, and that I was been put on more antibiotics than i was already on. I was didn't really know what was happening and then my consultant came and i thought he came to say what was going on but he hadn't heard about the infection so he read my notes and then sat and told me that, it wasn't good news, the type of infection I had was one that buries its self and that it was more than likely already on the battery. I asked what the next step would be, and he said that if it got no better within 7 days, the battery would be removed and that he thought it was already too late to save the battery. This broke my heart, I was so upset, I couldn't bare thinking about having the battery taken out and losing the relief I had. As each day when I went I felt more poorly and knew this was going end well. It was Friday night and my consultant came and saw and said he wanted to wait no longer and the battery had to be removed as soon as possible, this was the worst feeling. It was the day of the operation and I was just couldn't believe it was happening, I went to theater with 70% and woke up with no relief and all my pain back. It was awful and I was in such a state. My mum and her partner were there but I couldn't talk to any, the pain was just taking over and there was nothing I could do. I felt the worst I have ever felt in my life, but the next day my mum came and told me that I could have a puppy, I had wanted one for moths but was waiting till my 21^st birthday, but mum said it was then when I need one and I felt like I had something to focus on. 5 days later I was discharged from hospital, by my consultant came and spoke to me and said I have to wait 3 months but I could have the battery put back in, 3 months seems such a long time when I am in this much pain but it was a positive knowing I will get the relief back.

It was thought that my the type of infection I had, was caused from the sore and that’s the reason it never healed but once the implant was put in the infection moved to that, which allowed my sore to heal and it has stayed healed.

It now the end of November and I am having my battery put back in, in 10 days time, I have never been so excited to have an operation. These last 3 months have been tough but thanks to my family and friends, I have gotten through it and kept smiling and going. One thing that has helped so much is my puppy, having something to focus on and look after him each day has made me have to keep going.

It took me a while to write this blog because it’s been such a tough time and so emotional but I am strong and I am going to win this and get my life back. 

Never giving up hope or fighting CRPS

As I explained in my last blog, I am currently waiting to have the Spinal Cord Stimulation operation, but due to the open sore on my leg, I have to wait for it to heal. I have still got one sore that will not heal. I am currently on long term antibiotics and I have my sore constantly dressed. These dressings are incredibly painful because of the hypersensitivity caused by the CRPS. I recently had to reduce the amount of dressings due to them becoming a problem when my leg swells. I have tried so many dressings and have only found one that is the most bearable and which my leg does not react to, and this dressing is called Mepilex. I have had this sore for nearly 3 years and I find it really frustrating that there is a treatment that may help but I cannot have it until my sore heals.  Doctors have explained that dressings they would normally use on non-healing wounds are not really an option because of the pain they would cause, also the doctors have mentioned using creams on non-healing sores, and this too, isn’t possible because my leg reacts to any creams. It goes bright red and burns really intensely which causes a lot more pain and results in my whole body tensing up.

I have recently just been back to the dermatologist and re-questioned him about anything they could try that they haven’t already. I understand that I am a very complex case but need to find something to help my sore heel so that I can have the Spinal Cord Stimulator operation, which I have been waiting for. My dermatologist explained that we are in a difficult situation with finding something to help, however he re-suggested having a skin graft. When I first went to the hospital about getting help to get my sore heeled, it was to see a plastic surgeon, but at the time he didn’t want to do a skin graft. Now the dermatologist is sending me back to see the plastic surgeon to see if this could help and whether he would try it. I am willing to go to see the plastic surgeon but want to know all the facts and everything about the skin graft before I would go ahead with it.

I started going to hydrotherapy a few months ago to see if it would help me to get some mobility back. I found it extremely painful and it caused me a lot more suffering after the sessions; however I found that I could move more in water than I could on land. I attended about 7 sessions and my progress started to slip away and it only seemed to be causing me more pain.t. So I, my mum and my hydro therapist came to the decision of taking a break from it for now and maybe go again once I have had the Spinal Cord stimulator, because I think then it will be a great help and I would gain a lot from it.

Sleep deprivation is a major problem at the moment, I only manage to get 30 minutes – 1 hour sleep per night, the rest of the night I spend resting as I do find resting helps me to feel less tired. Lack of sleep is due to the amount of pain I suffer from and unfortunately there is no pain relief that helps control my main pain levels, because I need the stronger medication but this makes me really poorly.

Over the years of having CRPS, I have found ways to help cope with the pain and how the pain can make me feel from day to day. I find listening to music extremely helpful; especially listening to JLS because they are my favourite band. Also I have set up an awareness page on twitter (@crpsawareness), my aim is to raise more awareness and to help those that suffer with CRPS too. I find it helpful because I feel that I am doing something positive out of a negative. By talking to people who also suffer with CRPS through my awareness page makes me realise I am not alone with this disease and I find it helpful talking to them.  The main thing that helps me keep strong is my family and friends, they are amazing and are there for me and support me through everything. My mum is the one who comes to every hospital appointment with me and changes my dressings on my leg, I realise this can’t be easy for her or any of my family to go through, it’s not just me going through all this, it effects my family as well.

Elation and desperation

This blog is about how my CRPS has been from 2009 up and till the present day.

It was the summer of 2009 and I was on a family holiday, we had been out for the day at a theme park. I love rides and rollercoaster’s, however they do cause a lot of pain but I can’t stop everything I enjoy. My pain was a lot worse due to been on the rides, we arrived back to where we were staying and all of a sudden I felt no pain at all, I shouted my family and they came running through and wondered what was wrong I told them I was in no pain, they looked at me and couldn’t believe what I was saying. I tried to touch my leg where my CRPS was, and I could touch it without hurting. It was amazing I just couldn’t believe what was happening. I went to bed and slept the whole night which was great and when I woke I didn’t know if I had dreamt my pain going completely or not, but I hadn’t. I just felt like shouting from the roof tops that I had no pain. The doctors had told me that it could go between the ages of 16 and 19 and I was 16 and it had gone it felt incredible. A week later we came back from holiday and I was still pain free, I still relied on my wheelchair because my legs were not strong enough to walk all the time.

I went to physio and tried to get movement back because I wanted to get going again, it was hard because of my legs been tired they would just give way from under me without warning and I would fall straight to the floor.  However I kept trying to do more and more walking.

3 weeks after the pain going, I started a child care course, it’s what I always wanted to do and was looking forward to learning new things and going out and getting experience of working with children. I made some good friends at college, although I found it hard for people to except me as a person and not just see the wheelchair.

It was all going well I had bought skinny jeans and boots that I could now wear because I could touch my leg. Suddenly it all started to change again. About 5 weeks after it going I started getting an aching pain in my leg, after a few days of having this feeling, all of a sudden I felt the burning pain again and it hurt to touch my leg. I realised that the pain was coming back. I was really emotional and I felt devastated and heartbroken. However it wasn’t straight forward the pain kept coming and going for about 4 more weeks. I felt like it was messing with my head, a few hours I would have pain and it be unbearable to touch and then a few hours later I would have no pain and could touch it, until it came back and didn’t go again. I could not understand how it could go for 9 weeks and then come back, I just felt so upset and confused by it all.

A few weeks after it coming back, 1 scar on my leg opened up, it was a scar from an operation that I had when I was 3 and it just opened up. I carried on at college and my tutors were really upstanding and helped me with coping with it coming back and supported me while I was at college. My family was amazing and supportive and it was a shock for them as well.

A few months went by and it was now 2010 and I still had the open sore, it had been getting infected and was getting bigger instead of getting smaller. I started trying dressings, which was difficult because everything I tried just caused intense pain. I then started to feel another scar opening up, it was horrible because no matter how much I wanted to, there was nothing I could do to stop it.

I now had two open sores, things seemed to be getting harder to cope with, my sores would bleed so much that I had to change the dressings at college and because of how much pain it causes it would affect my concentration. I didn’t want to let it stop me so I just got on with it and was still getting good grades on my assignments. Half of my course involved going on placements in a school, I enjoyed working with the children and learning new things, however I did find it difficult getting around in my wheelchair.

It was April of 2010 and my sores still had not healed, they had become infected and anything I tried to heal them just would not work. I was only getting 2 hours sleep per night and was in so much pain, but I was no longer getting relief from the pain because my painkillers stopped working due to the pain over powering them. I still went to college because I didn’t want it to control me, most days I don’t think I should have done but I was so determined to not let it win. I then was advised by my tutor to stop going to my placement because they could see I was starting to struggle with it.

Then it came round to May and I had taken some time off college and things took another turn for the worse. I went to get a drink and the next thing all I can remember is waking up on the floor, all confused and quite scared because I didn’t know what was happening. I rang my mum and she came rushing home from work and we thought that maybe I had fainted. The next day I went to the doctors and they explained that I had either fainted or had a fit, the doctor told my mum to watch if it happens again to determine whether I am fitting or fainting. It then happened again once I got home and my mum saw me and she thought I fainting and not fitting.  A couple of weeks later and I was still having fainting attacks, I was referred to have tests done to make sure there was nothing else causing this to happen. I had a 24 hour ECG, an echocardiogram scan and MRI. The results all came back ok and the fainting was put down to being caused my pain and severe lack of sleep because I was now only getting 1 hour sleep.

I was advised by college to stop the course I was doing because they felt that I was not well enough to complete it, I didn’t want to do this because I felt like I had failed if I did but I had to face realisation and put my health first. Although I did finish my first year of assignments at home and passed them all, and I got a C grade for my first year and I can continue the course when I am ready.

It was 2011 and I was still fainting and still had two open sores on my leg. I had been transferred to the pain team at a different hospital because I was previously at the children’s hospital. When I saw the pain team they discussed possible treatments and an operation called spinal chord stimulation was mentioned but the consultant wanted to discuss this with other colleagues because of my complex case.  

I was referred to a plastic surgeon to see about maybe having a skin graft on my leg to heal the sores. The plastic surgeon didn’t know if this was an option because of the CRPS and the sensitivity of it and whether I could cope with this.  A skin graft was ruled out as an option and so was something called skin culture. In September it was decided to try putting a viscopaste dressing on my leg and then putting it into plaster cast so that my leg was immobilised. This was painful beyond words, because of the weight of it on my CRPS and especially the removal of it once a week. However after  one week of having it on the front sore on my leg had healed over ever so slightly. I continued with this for a further 7 weeks but it didn’t seem to be healing the other sore on my leg. It was decided to stop this treatment. The sore that had healed was still healed when the plaster cast was removed, however after two days of coming out of the plaster cast this sore re-opened.

I went back to see the pain team and they re-discussed the spinal chord stimulation treatment, but explained that this would not be an option while I have open sores, due to the risk of infection. The spinal chord stimulation is a wire being placed up my spine, another wire brought round from my spine to my tummy and an implant placed just under the skin.  This is then turned on and controlled by me with a remote control.  If it works and there is always a possibility it won’t, it could possibly take up to fifty per cent of my pain away but could leave a tingling sensation, similar to pins and needles.

I am now currently seeing the dermatologist to try and get my sores healed so that I can have this procedure I am there most weeks to have the dressings changed. I have now had the sores for over 2 and a half years and hope that they will heal soon, so that I can hopefully get some pain relief with the spinal stimulation.

It hasn’t been easy to go through all this but I hold out hope, that one day I will be in less pain and will be able to for fill my ambitions and dreams. The main people that help me through every day are my mum and her partner and my brother, they are always there for me and just help me so much, I cannot thank them enough for what they have and do for me.

Information about Complex Regional Pain Syndrome (CRPS)

Complex Regional Pain Syndrome formally known as Reflex Sympathetic Dystrophy. It is a Chronic Pain Syndrome which affects a part of the body, often an arm or leg. CRPS is rare and not very well known but can have a major impact on someone’s life and can be very disabling.

There are two types of CRPS; type 1 is when there is no identifiable nerve injury and type 2 is when the pain can be traced to an identifiable nerve injury.

CRPS may occur after surgery or an injury to part of the body. Symptoms may include:

• Burning pain in one part of the body
• Increased skin sensitivity
• Changes in skin temperature: warmer or cooler compared to the opposite extremity
• Changes in skin colour: often blotchy, purple, pale, or red
• Changes in skin texture: shiny and thin, and sometimes excessively sweaty
• Changes in nail and hair growth patterns
• Swelling and stiffness in affected joints
• Motor disability, with decreased ability to move the affected body part

CRPS can be exceptionally painful, so it can become difficult to move the affected area.  This can lead to muscles weakening and stiffness, sometimes, the less the affected area is moved the harder it can become to move and symptoms may get worse. Pain may also become worse when you are stressed and at night, this may result in lack of sleep.

Doctor’s are still unsure what causes CRPS, but they are lead to believe it is caused by a change in the nerves after an injury or surgery. It is understood that the nerves that send pain signals become more sensitive and non-pain nerves begin to send pain signals as well.

Although CRPS is incurable is can be controlled by treatments. Once your doctor has diagnosed you with CRPS they will help you to find the best treatment to help you and their aim will be to reduce the pain. Treatments may include:

·         Medicines – often a different combination of medicines are used to find the best combination that helps you.

·         Nerve Blocks – these are injections that may relief pain for a few hours and are maybe used so that the patients can do some exercises while the pain is relieved.

·         Physiotherapy and Occupational Therapy – relaxation techniques have been successful in helping to deal with the pain and physiotherapy may help to keep the affected area moving.

CRPS is not a psychological syndrome, but people may develop psychological problems when family, friends, and co-workers do not believe their complaints of pain, people that suffer with CRPS need all the support they can get.

Not letting CRPS, stop me from achieving goals

This blog post is about things I did and how my CRPS was during the years 2008 to 2009.

I was still getting the open sores where my CRPS was and by this time there were 5 different scars that would just open up. When I could feel a sore coming and my mum used to say it might not come but I had never been wrong, it just felt like I couldn’t stop it from happening no matter how much I wanted it to and it was awful. When they would come they would last for a couple of months and then go again. They caused so much pain, because I would have to have dressings on my leg and because my leg is hyper sensitive it caused extreme intense pain.

I had always wanted to be a bridesmaid and then in 2008 I got the chance to. I relied on my wheelchair quite a lot at this stage especially when I would get the open sores. However I was determined to walk down the aisle behind the bride. I had open sores on my leg at the time, but I really wanted to reach the goal I had set for myself. I went to physio and mainly worked on my walking, it was difficult because it really hurt to walk but once I got into the right frame of mind I wasn’t going to give up trying. As the day came and I was bridesmaid and was at the church, I started to walk behind the bride and made it all the way down the aisle. I was so pleased with myself and couldn’t believe I had done it. It did make my pain worse but it was worth it because I had done it.

School did become difficult, coping with the work and the pain I was in, but I enjoyed school and wanted to do well. Whenever I went to the hospital the doctors couldn’t believe I was still going to school. Sometimes it would have been easier to stay at home but I use to think to myself that the pain wouldn’t be any better at home so I carried on going to school. The school was very good and understanding, if I needed time out of a lesson they would allow me to and helped me to cope the best they could.

2009 and I was in my last year at school and getting ready for my exams and I was worried because I struggled to concentrate due to the pain and suffered from short term memory loss due to the pain so I was worried I would forget things. I was predicted fairly good grades but in the mock exams I didn’t get the grades I was predicted.

I did the exams and did find it hard but I just got on with it and tried my best, I revised so much, to try and get the grades I needed to get into the college course I wanted to do.

I got my grades back and couldn’t believe I had achieved the grades I was predicted and some were better than predicted. I came out with 2B’s, 8C’s and 1D. I had got more than enough grades to get into college.

I felt, that although I had CRPS it wasn’t going to stop me doing what I wanted to do and to achieve, so I didn’t let it.

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.